Measurement Tools

INTRODUCTION

The CAARN Library of Recommended Measures consists of commonly used tools for investigators to pull from for their health and clinical gerontology research for participant baseline characterization, screening and/or outcome purposes.  This select list includes a set of highly accurate and validated measurement tools that are feasible for research protocols for proposed pilot, randomized controlled, and dissemination studies with community and healthcare partners.

Screening and outcomes measures should be relevant to the specific users of the intervention (be it a single person or a population of interest). They can be patient self-reported, objective performance-based (which are recorded/scored by an observer), or gathered through biomedical tests (such as blood work, urine samples etc.) or medical examination. This list includes recommended objective performance and patient-report measures.

Description

Selected measures were pulled from national and global databases, which are highlighted below. Provided with the name of the measurement tool, is the purpose, recommended use, a source or key reference(s) for its validation with a community-dwelling older adult population, and a brief overview of the characteristics and procedures. Some clinical populations are cited for research done with specific patient groups. They were carefully selected upon review and consensus of the CAARN principal investigators, which includes experienced geriatricians, gerontologists, and a health disparities expert.

Value

This library helps to ensure that researchers use the best available tools to assess baseline characteristics and outcomes for their funded studies, which strengthens the science (design) and overall project. By having researchers use a set of standardized, validated measures in their research study protocols across study samples, we can help to better characterize the health of Wisconsin communities and populations.

This library was developed with support from National Institute on Aging grant R33 AG061699 to the University of Wisconsin-Madison.

Didn’t find what you were looking for?

The following larger repositories were source database sites for this selected CAARN Library, which only contain trustworthy peer-reviewed tools. We refer researchers to the following well-curated expanded measurement libraries as chief resources to this one:

Contact caarn@medicine.wisc.edu for more information or suggested contributions to the library.

OBJECTIVE OUTCOME MEASURES

Assessments administered, conducted and recorded by an observer (researcher or clinician) of the research participant or patient. These assess the effect, both positive and negative, of an intervention or treatment.

  • Physical Performance
  • Cognitive Performance

Physical Performance

Tools that help assess and characterize physical functioning of a research participant or patient, such as motor control (movement), strength, balance, and flexibility of lower and upper extremities.

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Nine-Hole Peg Test (9-HPT)

Purpose: To assess upper extremity functioning through a short physical task involving the participant placing nine pegs in nine evenly distributed holes.

Recommended Use: To establish a baseline of hand/finger dexterity in individuals who have recently had a change in health status related to physical function (stroke, MS, PD). This is done by recording the time it takes for the individual to complete the task with the hand of interest.

9-HPT (link to measure)

The full 9-HPT kit (peg board and pegs) are commercially available for purchase at a low cost.

Key References (validated for community-dwelling older adults)

  • Mathiowetz V, Kashman N, Volland G, Weber K, Dowe M & Rogers S. Grip and pinch strength: normative data for adults. Arch Phys Med Rehabil. 1985; 66, 69-72. PMID: 3970660
  • Oxford Grice K, Vogel KA, Le V, Mitchell A, Muniz S, Vollmer MA. Adult norms for a commercially available Nine Hole Peg Test for finger dexterity. Am J Occup Ther. 2003;57(5):570-573. doi:10.5014/ajot.57.5.570 PMID: 14527120

The above references detail the reliability, validity, standardization, and responsiveness of the assessment for community-dwelling healthy adults.

Completion time: 1 – 3 minutes

  • Individuals are instructed to place nine pegs into nine holes on a board one-by-one followed by removal of the pegs in the same way using only one hand (typically only one hand is evaluated).
  • A clinician or researcher administers the instructions then observes and times the completion of the task.
  • The wood/plastic board with 9 holes is placed at the individual’s midline, next to it is the square box containing 9 pegs.
  • Using a stopwatch, the observer starts timing the moment the individual touches the first peg until the moment the last peg is placed back in the separate square container.
  • Scoring is based on how long (in seconds) the individual takes to complete the task. The more time, the more impaired the individual’s dexterity is.

Clinical Populations

  • Stroke: Johansson GM & Hager CK. A modified standardized nine-hole peg test for valid and reliable kinematic assessment of dexterity post-stroke. Journal of NeuroEnginnering and Rehabilitation. 2019;16:8.
  • Multiple Sclerosis: Feys P, Lamers I, Francis G, Benedict R, Phillips G, LaRocca N, et al. The Nine-Hole Peg Test as a manual dexterity performance measure for multiple sclerosis. Multiple Sclerosis Journal. 2017;23(5): 711-20.
  • Parkinson’s: Earhart GM, Cavanaugh JT, Ellis T, Ford MP, Foreman B, & Dibble L. The 9-Hole Peg Test of upper extremity function: Average values, test-retest reliability, and factors contributing to performance in people with Parkinson Disease. Journal of Neurologic Physical Therapy. 2011;35(4): 157-63.

Timed Up and Go Test (TUG)

Purpose: To assess an individual’s mobility, balance, walking ability, and fall risk through the completion of a simple walking task.

Recommended Use: To establish a baseline of functional ambulation in individuals who have recently had a change in health status related to physical function (stroke, TBI, MS, PD).

TUG Test (link to measure)

Only a chair, timer, and marker for 10ft (ex. tape) are needed.

Key References (validated for community-dwelling older adults)

  • Podsiadlo D & Richardson S. The timed “Up & Go”: a test of basic functional mobility for frail elderly persons. J Am Geriatr Soc. 1991;39(2):142-148. PMID: 1991946
  • Rockwood K, Awalt E, Carver D, MacKnight C. Feasibility and measurement properties of the functional reach and the timed up and go tests in the Canadian study of health and aging. J Gerontol A Biol Sci Med Sci. 2000;55(2):M70-M73. PMID: 10737688
  • Shumway-Cook A, Brauer S, Woollacott M. Predicting the probability for falls in community-dwelling older adults using the Timed Up & Go Test. Phys Ther. 2000;80(9):896-903. PMID: 10960937
  • Lin MR, Hwang HF, Hu MH, Wu HD, Wang YW, Huang FC. Psychometric comparisons of the timed up and go, one-leg stand, functional reach, and Tinetti balance measures in community-dwelling older people. J Am Geriatr Soc. 2004;52(8):1343-1348. PMID: 15271124

The above references detail the reliability, validity, standardization, and responsiveness of the assessment for community-dwelling healthy adults.

Completion time: 1 – 2 minutes

  • All that is needed for this assessment is a chair, a room that is at least 10 ft long, and a stopwatch of some kind.
  • A clinician or researcher administers the instructions then observes and times the completion of the task.
  • The individual is instructed to stand up from the chair, walk to the line on the floor (10 ft away) at a normal pace, turn, walk back to the chair, and sit down.
  • Individuals are timed from when the clinician says “go” to when they are seated back down in the chair.
  • If it takes the individual longer than 12 seconds to complete the test, the individual can be classified as a fall risk.

Clinical Populations

      Alzheimer’s Disease and Related Dementias

  • Ries JD, Echternach JL, Nof L, Gagnon Blodgett M. Test-retest reliability and minimal detectable change scores for the timed “up & go” test, the six-minute walk test, and gait speed in people with Alzheimer’s disease. Phys Ther. PMID: 19389792

       Brain Injury

  • Katz-Leurer M, Rotem H, Lewitus H, Keren O, Meyer S. Functional balance tests for children with traumatic brain injury: within-session reliability. Pediatr Phys Ther. 2008;20(3):254-258. PMID: 18703963

       Lower-limb amputation

  • Schoppen, T, Boonstra A, Groothoff JW, de Vries J, Goeken LNH & Eisma WH. The Timed Up and Go Test: Reliability and validity in persons with unilateral lower limb amputation. Archives of Physical Medicine and Rehabilitation. 1999;80: 825-8.

       Parkinson’s

  • Brusse KJ, Zimdars S, Zalewski KR, Steffen TM. Testing functional performance in people with Parkinson disease. Phys Ther. 2005;85(2):134-141. PMID: 15679464
  • Morris S, Morris ME & Iansek R. Reliability of measurements obtained with the Timed “Up & Go” Test in people with Parkinson Disease. Physical Therapy. 2001;81,2: 810-8.

       Stroke

  • Flansbjer UB, Holmbäck AM, Downham D, Patten C, Lexell J. Reliability of gait performance tests in men and women with hemiparesis after stroke. J Rehabil Med. 2005;37(2):75-82. PMID: 15788341
  • Knorr S, Brouwer B, Garland SJ. Validity of the Community Balance and Mobility Scale in community-dwelling persons after stroke. Arch Phys Med Rehabil. 2010;91(6):890-896. PMID: 20510980

Short Physical Performance Battery (SPPB)

Purpose: To assess the lower extremity functioning in older adults.

Recommended Use: For individuals with a recent change in health status, can be used to establish baseline functioning or better understand the impact of a disease/diagnosis on an individual’s daily life.

SPPB (link to measure)

Only a chair, timer, and marker for 3 or 4 meters (ex. tape) are needed.

Key References (validated for community-dwelling older adults)

  • Guralnik JM, Simonsick EM, Ferrucci L, et al. A short physical performance battery assessing lower extremity function: association with self-reported disability and prediction of mortality and nursing home admission. J Gerontol. 1994;49(2):M85-M94. PMID: 8126356
  • Guralnik JM, Ferrucci L, Simonsick EM, Salive ME, Wallace RB. Lower-extremity function in persons over the age of 70 years as a predictor of subsequent disability. N Engl J Med. 1995;332(9):556-561. PMID: 7838189
  • Guralnik JM, Ferrucci L, Pieper CF, et al. Lower extremity function and subsequent disability: consistency across studies, predictive models, and value of gait speed alone compared with the short physical performance battery. J Gerontol A Biol Sci Med Sci. 2000;55(4):M221-M231. PMID: 10811152

      Meaningful Change and Responsiveness:

  • Perera S, Mody SH, Woodman RC, Studenski SA. Meaningful change and responsiveness in common physical performance measures in older adults. J Am Geriatr Soc. 2006;54(5):743-749. PMID: 16696738
  • Kwon S, Perera S, Pahor M, et al. What is a meaningful change in physical performance? Findings from a clinical trial in older adults (the LIFE-P study). J Nutr Health Aging. 2009;13(6):538-544. PMID: 19536422
  • Perera S, Studenski S, Newman A, Simonsick E, Harris T, Schwartz A, Visser M; Health ABC Study. Are estimates of meaningful decline in mobility performance consistent among clinically important subgroups? (Health ABC study). J Gerontol A Biol Sci Med Sci. 2014 Oct;69(10):1260-8. PMID: 24615070

The above references detail the reliability, validity, standardization, and responsiveness of the assessment for community-dwelling adults. Additional information is available on the SPPB website.

Completion time: 8 – 15 minutes

Clinical Populations

  • Alzheimer’s Disease and Related Dementias: Olsen CF, Bergland A. Reliability of the Norwegian version of the short physical performance battery in older people with and without dementia. BMC Geriatrics, 2017;17(1), 1-10.
  • Multiple Sclerosis: Motl RW, Learmonth YC, Wójcicki TR, Fanning J, Hubbard EA, Kinnett-Hopkins D, et al. Preliminary validation of the short physical performance battery in older adults with multiple sclerosis: secondary data analysis. BMC Geriatrics, 2017;15, 1-7.

Cognitive Performance

Tools that help assess and characterize cognitive functioning of a research participant or patient, such as thinking, reasoning or remembering of information.

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Brief Interview of Mental Status (BIMS)

Purpose: To determine the individual’s level of attention, orientation, and ability to register/recall new information.

Recommended Use: As a cognitive screening tool when cognitive deficits are suspected, or when a study depends on understanding cognitive characteristics.

BIMS (link to measure, instructions and scoring)

Key References 

  • Saliba D, Buchanan J, Edelen MO, Streim J, Ouslander J, Berlowitz D & Chodosh J. MDS 3.0: Brief Interview for Mental Status. J Am Med Dir Assoc. 2012;13, 7: 611-7. PMID: 22796362
  • Chodosh J, Edelen MO, Buchanan JL, et al. Nursing home assessment of cognitive impairment: development and testing of a brief instrument of mental status. J Am Geriatr Soc. 2008;56(11):2069-2075. PMID: 19016941
  • Mansbach WE, Mace RA, Clark KM. Differentiating levels of cognitive functioning: a comparison of the Brief Interview for Mental Status (BIMS) and the Brief Cognitive Assessment Tool (BCAT) in a nursing home sample. Aging Ment Health. 2014;18(7):921-928. PMID: 24679128

The above references detail the reliability, validity, standardization, and responsiveness of the assessment for nursing home residents.

Number of Items: 7

Completion time: 8 – 10 minutes

Short form available: No

Translations available: Yes

  • A clinician/researcher administers questions to the individual following the order and instructions on the test packet, starting with asking for the individual’s name. Individuals verbally respond to the best of their abilities.
  • Responses should be marked on the form as completed; scoring is completed after the interview has finished. Higher scores indicate a greater level of cognitive functioning.

      *The only modifications allowed are those noted within the testing packet.

Clinical Population

  • Heart failure: Koncijia K, Hinds E, Messinger-Rapport B & Lathia A. Effectiveness of the Brief Interview for Mental Status (BIMS) as a screening tool for cognitive impairment in the geriatric heart failure population. Journal of Post-Acute and Long-Term Care Medicine. 2014;15, 3.

Mini-Cog©

Purpose: To detect the presence of cognitive impairment in older adults through assessing an individual’s cognitive functioning on three basic tasks.

Recommended Use: As a cognitive screening tool when cognitive deficits are suspected, or when a study depends on understanding cognitive characteristics.

Mini-Cog© (link to measure, administration and scoring)

Key References 

  • Scanlan J & Borson S. The Mini-Cog: Receiver operating characteristics with the expert and naïve raters. Int J Geriatr Psychiatry 2001; 16: 216-222. PMID: 11241728
  • Borson S, Scanlan JM, Chen P & Ganguli M. The Mini-Cog as a screen for dementia: Validation in a population-based sample. J Am Geriatr Soc. 2003;51: 1451-4. PMID: 14511167
  • Borson S, Scanlan JM, Watanabe J et al. Improving identification of cognitive impairment in primary care. Int J Geriatr Psychiatry 2006;21: 349–355. 3.
  • Lessig M, Scanlan J et al. Time that tells: Critical clock-drawing errors for dementia screening. Int Psychogeriatr. 2008 June; 20(3): 459–470. 4.
  • Tsoi K, Chan J et al. Cognitive tests to detect dementia: A systematic review and meta-analysis. JAMA Intern Med. 2015; E1-E9. 5.
  • McCarten J, Anderson P et al. Finding dementia in primary care: The results of a clinical demonstration project. J Am Geriatr Soc 2012; 60: 210-217.

The above references detail the reliability, validity, standardization, and responsiveness of the assessment for community-dwelling adults.

Number of Items: 3 tasks

Completion time: 5 – 8 minutes

Translations available: Yes (available here)

  • A clinician/researcher follows the script on the assessment sheet and leads the individual through the test verbally.
  • Before beginning the test, give the individual the clock drawing sheet (or a blank piece of paper) and inform them that it will be used later in the assessment.
  • The individual should complete step 1 three word registration with participant (task 1), followed by the clock drawing task, and lastly the three word recall.
  • Scoring is done on the assessment sheet after the completion of all three tasks (total out of 10 points).

Clinical Populations

  • Heart failure: Patel A, Parikh R, Howell EH, Hsich E, Landers SH & Gorodeski EZ. Mini-Cog performance: Novel marker of post discharge risk among patients hospitalized for heart failure. Circulation and Heart Failure. 2015;8:8-16.
  • Diabetes: Sinclair AJ, Gadsby R, Hillson R, Forbes A & Bayer AJ. Brief report: Use of the Mini-Cog as a screening tool for cognitive impairment in diabetes in primary care. Diabetes Research & Clinical Practice. 2013; 100, 1: 23-5.

Medi-Cog™

Purpose: To detect the presence of cognitive impairment in older adults through assessing an individual’s cognitive functioning on three basic tasks.

Recommended Use: As a medication safety assessment and cognitive screening tool to identify patients at risk for medication mismanagement and of Instrumental Activities of Daily Living (IADL) impairment.

Medi-Cog™ (link to measure, administration and scoring)

The Medi-Cog™ is a combination of two cognitive screening tools, Dr. Soo Borson’s Mini-Cog© and a pillbox organizational skills screen, the Medication Transfer Screen (MTSTM).

Key References

  • Marks T, Everson V, Leighton M, Manor S, Palomer L,…&  Farrar Edwards DF. Screening for Functional Cognition Using a Simple Performance-Based Test of Cognition and Medication Management. Am J Occup Ther.Aug 2019, 73(4_Supplement_1), 7311515264p1. PMID: 32153383
  • Marks TS, Giles GM, Al-Heizan MO, Edwards DF. How Well Does the Brief Interview for Mental Status Identify Risk for Cognition Mediated Functional Impairment in a Community Sample?. Arch Rehabil Res Clin Transl. 2021;3(1):100102. Published 2021 Jan 13. PMID: 33778475

The above references detail the reliability, validity, standardization, and responsiveness of the assessment for community-dwelling older adults.

Number of Items: 3 tasks

Completion time: 5 – 8 minutes

  • A clinician/researcher follows the script on the assessment sheet and leads the individual through the test verbally.
  • Before beginning the test, give the individual the clock drawing sheet (or a blank piece of paper) and inform them that it will be used later on in the assessment.
  • The individual should complete each task to the best of their abilities starting with word recall, then clock drawing, then the medication transfer screen.
  • The score is done on the assessment sheet after the completion of all three tasks (total out of 10 points).

Montreal Cognitive Assessment (MoCA)

Purpose: To assess an individual’s cognitive performance through a series of questions and tasks in order to understand what abilities may be impaired and what types of treatment may be appropriate.

Recommended Use: As a cognitive screening tool to detect mild deficits and impairment that are suspected, or when a study depends on understanding cognitive characteristics.

MoCA (link to measure)

Key Reference 

  • Nasreddine ZS, Phillips NA, Bédirian V, Charbonneau S et al. The Montreal Cognitive Assessment, MoCA: a brief screening tool for mild cognitive impairment. J Am Geriatr Soc, 2005 Apr;53(4), 695-699. PMID: 15817019

The above reference and Mocacognition.com details the reliability, validity, standardization, and responsiveness of the assessment for community-dwelling older adults, as well as the below clinical populations.

Number of Items: 30

Completion time: 10 – 12 minutes

Online administration: Yes, via phone/tablet (available here)

Translations available: Yes

  • A healthcare professional/researcher follows the script on the assessment sheet and leads the individual through the test verbally.
  • Before beginning the test, give the individual the clock drawing sheet (or a blank piece of paper) and inform them that it will be used later on in the assessment.
  • The individual should complete each task to the best of their abilities starting memory questions, drawing a clock, and identifying well known animals.
  • Scoring is done following the test and scores are based on the number of correct responses given by the participant.

Clinical Populations

  • Alzheimer’s Disease
  • Parkinson’s Disease
  • Huntington’s Disease
  • Lewy Body Dementia
  • Fronto-temporal Dementia
  • VCI/Stroke
  • Brain metastasis
  • ALS
  • Sleep behavior disorder
  • Brain tumors
  • Multiple sclerosis
  • Head trauma
  • Depression
  • Schizophrenia
  • Heart failure
  • Substance abuse
  • HIV
  • COVID, and more

 

Telephone Interview for Cognitive Status (TICS)

Purpose: To provide a brief overall assessment of cognitive status for adults 60+.

Recommended Use: In situations where in-person cognitive screening is impractical or inefficient (e.g., large-scale population screening, epidemiological surveys, with patients who are unable to appear in person for clinical follow-up). It is particularly useful for examining visually impaired older adults and those who are unable to read or write.

The TICS toolkit is available at a cost.

Key Reference 

  • Brandt J, Spencer M, Folstein M. The Telephone Interview for Cognitive Status. Neuropsychiatry, Neuropsychology & Behavioral Neurology, 1998; 1(2):111-118.

The above references detail the reliability, validity, standardization, and responsiveness of the assessment for community-dwelling adults.

Number of Items: 11

Completion time: 5 – 10 minutes

  • Before administering the telephone interview, the examiner must speak with someone at the same location (e.g., family member, caregiver) who will serve as a proctor to ensure that the environment is appropriate for testing and that the examinee is able to hear spoken language at a conversational volume.
  • All examinee responses are recorded verbatim. The individual item scores are summed to obtain the TICS Total score.
  • The TICS Total score provides a measure of global cognitive functioning and can be used to monitor changes in cognitive functioning over time.

Weekly Calendar Planning Activity (WCPA)

Purpose: To assess an individual’s cognitive performance and executive functioning abilities through an instrumental activity of daily living (IADL) planning task.

Recommended Use: As a cognitive screening tool to assess executive functioning abilities and to detect suspected cognitive deficits.

The WCPA is available at a cost (e-book version available).

Key Reference 

  • Toglia J, Lahav O, Ben Ari E, Kizony R. Adult Age and Cultural Differences in Performance on the Weekly Calendar Planning Activity (WCPA). Am J Occup Ther. 2017;71(5). PMID: 28809662

The above references detail the reliability, validity, standardization, and responsiveness of the assessment for community-dwelling adults.

Number of Items: 17 – 18

Short Form: Yes – 10 item version

Completion time: 10 – 40 minutes, depending on level (short form: 10 – 15 minutes)

  • The examiner chooses between 3 levels of graded assessments based on the age and cognitive functioning of the participant; presentation and format vary in complexity based on the selected level.
    • Adults/older adult (version A or B)
    • Level 1: used for adults who are lower functioning.
    • Level 2: most commonly used and has been researched more extensively than level 1 or 3.
    • Level 3: used of adults who are exceptionally high functioning.
  • Participants enter a series of appointments into a calendar for one week while following certain rules and completing tasks. The task involves following and organizing a list of 17 (adult version) appointments or errands into a weekly schedule while keeping track of rules, avoiding conflicts, monitoring passage of time, and inhibiting distractions.
  • A post-test interview examines insight/awareness and unobservable strategies.
  • Scoring is based on participants ability to identify appointments as entered or missing, place appointments in the correct day/time, correctly label the appointment, and self-recognize errors (range 0-17 points). This raw score is matched to a weighted score, then used to calculate the efficiency score (total time (sec) / weighted score = efficiency score).

Clinical Populations

  • Multiple Sclerosis: Goverover Y, Toglia J, DeLuca J. The weekly calendar planning activity in multiple sclerosis: A top-down assessment of executive functions. Neuropsychol Rehabil. Epub 2019 Feb;30(7):1372-1387. PMID: 30810484

PATIENT-REPORTED MEASURES

Assessments that are completed by the research participant or patient themselves. These assess the effect, both positive and negative, of an intervention or treatment based on their changes in behavior or perceptions over time.

  • General Health and Quality of Life (QoL)
  • Health Behavior Change
  • Symptom-Specific QoL
  • Perceived Social Support
  • Mental Health (Anxiety, Depression, Stress, Social Isolation)
  • Physical Function
  • Self-Efficacy
  • Instrumental and Activities of Daily Living  (IADLs and ADLs)
  • Condition Specific
  • Social Determinates of Health

General Health and Quality of Life (QoL)

Tools that help to assess one’s perception of their overall well-being. Common facets of QoL include personal health (physical, mental, and spiritual), relationships, education status, work environment, social status, wealth, a sense of security and safety, freedom, autonomy in decision-making, social-belonging and their physical surroundings.

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PROMIS® Global Health (v1.2)

Purpose: A generic measure to obtain an overall self-evaluation of one’s physical and mental health.

Recommended Use: To assess a patient’s overall health and well-being. Best fit in patients who have deficits/concerns in multiple systems.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

PROMIS Global Health (v1.2) (link to measure, administration and scoring)

Key References 

  • Hays RD, Bjorner J, Revicki RA, Spritzer KL & Cella D. Development of physical and mental health summary scores from the Patient Reported Outcomes Measurement Information System (PROMIS) global items. Quality of Life Research, 2009; 18(7),873-80. PMID: 19543809
  • Hays RD, Schalet BD, Spritzer KL & Cella D. Two-item PROMIS® global physical and mental health scales. Journal of Patient-Reported Outcomes, 2017;1(1), 2.

The PROMIS – Global Health user manual is a comprehensive guide to using the measure (and short form versions), including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 10

Completion time: 2 – 5 minutes

Short form available: Yes – 2 items (one item for mental and physical health)

Online form available: No

Translations available: Yes (available here)

  • Patients are asked to rate their general health and well-being using a Likert-5 point scale that characterizes their response from 5 (excellent) to 1 (poor).
  • Can be completed using paper and pencil or using a computer adapted test-bank that allows for completion on a computer. Patients are required to check the box corresponding to the most accurate description of their response to each item.
  • Can be given with help from the clinician/researcher if the patient struggles to complete the form on their own.

Clinical Populations

  • Knee arthroplasty: Shim J, Hamilton DF. Comparative responsiveness of the PROMIS-10 Global Health and EQ-5D questionnaires in patients undergoing total knee arthroplasty. Bone Joint J. 2019 Jul;101-B(7):832-837. PMID: 31256677
  • Upper extremity illness: Stoop N, Menendez ME, Mellema JJ, Ring D. The PROMIS Global Health Questionnaire Correlates With the QuickDASH in Patients With Upper Extremity Illness. Hand (N Y). 2018 Jan;13(1):118-121. PMID: 28718322
  • Stroke/TIA: Lam KH, Kwa VIH. Validity of the PROMIS-10 Global Health assessed by telephone and on paper in minor stroke and transient ischaemic attack in the Netherlands. BMJ Open. 2018;8(7):e019919. Published 2018 Jul 11. PMID: 29997135
  • Chronic conditions: Gruber-Baldini AL, Velozo C, Romero S, Shulman LM. Validation of the PROMIS® measures of self-efficacy for managing chronic conditions. Qual Life Res. 2017;26(7):1915-1924. PMID: 28239781

PROMIS® Profiles (v2.1)

Purpose: The PROMIS profiles are a series of short forms probing into seven domains: depression, anxiety, physical function, pain interference, fatigue, sleep disturbance, and the ability to participate in social roles and activities. The assessment also includes a pain intensity rating item.

Recommended Use: To assess patient’s overall health and well-being; characterize baseline levels in each of the seven domains in patients who have deficits/concerns in multiple systems.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

PROMIS-57, -43 and -29 Profiles (v2.1) (link to measures, administration and scoring)

Key Reference 

  • Cella D, Choi SW, Condon DM, et al. PROMIS® Adult Health Profiles: Efficient Short-Form Measures of Seven Health Domains. Value Health. 2019;22(5):537-544. PMID: 31104731

The PROMIS – Profiles user manual is a comprehensive guide to using the measure (and short form versions), including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 57

Completion time: 20 – 30 minutes

Online form available: Yes

Short form available: Yes – the PROMIS-43 (v2.1) and PROMIS-29 (v2.1) item versions.

Translations available: Yes (available here)

  • Patients respond to a series of statements using Likert-5 point scales; eight questions are asked for each domain (six questions for PROMIS-43 and four for PROMIS-29). Scale descriptions vary depending on the domain that the patient is responding to. The final question on the form is a 10-point Likert scale asking patients to rate their pain intensity level.
  • Can be completed using paper and pencil or using a computer adapted test-bank that allows for completion on a computer. Patients are required to check the box corresponding to the most accurate description of their response to each item.
  • Can be given with help from the clinician/researcher if the patient struggles to complete the form on their own.

Clinical Populations

  • Chronic pain: Kean J, Monahan PO, Kroenke K, et al. Comparative Responsiveness of the PROMIS Pain Interference Short Forms, Brief Pain Inventory, PEG, and SF-36 Bodily Pain Subscale. Med Care. 2016;54(4):414-421. PMID: 26807536
  • Anxiety: Kroenke K, Baye F, Lourens SG. Comparative Responsiveness and Minimally Important Difference of Common Anxiety Measures. Med Care. 2019;57(11):890-897. PMID: 31415337
  • Chronic conditions: Edelen MO, Rose AJ, Bayliss E, et al. Patient-Reported Outcome-Based Performance Measures for Older Adults with Multiple Chronic Conditions. Rand Health Q. 2018 Oct;8(2):3 PMID: 30323986
  • Arthritis/related pain conditions: Katz P, Pedro S, Michaud K. Performance of the Patient-Reported Outcomes Measurement Information System 29-Item Profile in Rheumatoid Arthritis, Osteoarthritis, Fibromyalgia, and Systemic Lupus Erythematosus. Arthritis Care Res (Hoboken). 2017 Sep;69(9):1312-1321. PMID: 28029753
  • Chronic Obstructive Pulmonary Disease: Lin FJ, Pickard AS, Krishnan JA, et al. Measuring health-related quality of life in chronic obstructive pulmonary disease: properties of the EQ-5D-5L and PROMIS-43 short form. BMC Med Res Methodol. 2014 Jun;14:78. PMID: 24934150
  • Sarcoma: Wilke B, Cooper A, Scarborough M, Gibbs CP, Spiguel A. An Evaluation of PROMIS Health Domains in Sarcoma Patients Compared to the United States Population. Sarcoma. 2019;2019:9725976. PMID: 30799982

PROMIS® General Life Satisfaction

Purpose: To obtain a cognitive evaluation of life experiences and whether one likes their life or not.

Recommended Use: To assess an individual’s overall satisfaction with their life, especially useful in studies surrounding mental health or psychosocial factors.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

PROMIS General Life Satisfaction (link to measure, administration and scoring)

Key Reference

  • Vaughan B, Mulcahy J, Fitzgerald K. PROMIS General Life Satisfaction scale: construct validity in musculoskeletal pain patients. Chiropractic & Manual Therapies, 2020; 28: 27-34. PMID: 32539785

The PROMIS – General Life Satisfaction user manual is a comprehensive guide to using the measure (and short form versions), including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 10

Completion time: 2 – 5 minutes

Short form available: Yes – 5 item (Short Form 5a) version

Online form available: Yes

Translations available: Yes

  • Patients rate their perceived satisfaction with their lives using a Likert-7 point scale ranging from 1 (strongly disagree) to 7 (strongly agree) based on what they feel is the most accurate response to each item.
  • Can be completed using paper and pencil or using a computer adapted test-bank that allows for completion on a computer. Patients are required to check the box corresponding to the most accurate description of their response to each item.
  • Can be given with help from the clinician/researcher if the patient struggles to complete the form on their own.

Quality of Life Scale

Purpose: To quantify overall feelings of satisfaction with their life characterized by multiple domains such as health, relationships, family, and participation in work and organizations.

Recommended Use: For individuals who have recently had a change in health status or social status that may affect their overall perceived quality of life; to establish a baseline before procedure or treatment.

Quality of Life Scale (link to measure, administration and scoring)

Key References

  • Flanagan JC. Measurement of quality of life: Current state of the art. Archives of Physical Medicine and Rehabilitation, 1982;63, 56-59.
  • Flanagan JC. A research approach to improving our quality of life. American Psychologist, 1978;33, 138-147.

The above reference details regarding the reliability, validity, standardization, and responsiveness of the assessment for healthy adults.

Number of Items: 16 items

Completion time: 5 – 7 minutes

Online form available: Yes

Short form available: No

Translations available: Yes

  • Individuals rank how satisfied or dissatisfied they are with certain activities in their life on a 7-point Likert type scale ranging from 1 (terrible) to 7 (delighted).
  • Clinicians/researchers may provide assistance in the physical filling out of the form and caregivers may provide assistance as necessary.
  • Scoring should be completed after an individual finishes the assessment and is based on the summation of the responses to the statements. Higher scores indicate higher perceived quality of life.

Clinical Populations

  • Schizophrenia: Heinrichs DW, Hanlon TE, Carpenter Jr. WT. The Quality of Life Scale: An instrument for rating the schizophrenic deficit syndrome. Schizophrenia Bulletin. 1984;10,3: 388-96.
  • Chronic Illness: Burckhardt CS, Woods SL, Schultz AA, Ziebarth DM. Quality of life of adults with chronic illness: A psychometric study. Research in Nursing and Health, 1989;12, 347-354.
  • Fibromyalgia: Burckhardt, CS, Clark SR, Bennett RM. Fibromyalgia and quality of life: A comparative analysis. Journal of Rheumatology, 1993;20, 475-479.

Health Related Quality of Life (HRQOL-14)

Purpose: To provide a comprehensive image of how an individual’s health impacts their quality of life.

Recommended Use: For individuals with recent changes in health status. Can also be used to determine a baseline quality of life for individuals before they undergo a treatment or procedure.

Source: Center for Disease Control (CDC)

HRQOL-14 (link to measure, administration and scoring)

Key References

  • Moriarty DG, Zack MM, Kobau R. The Centers for Disease Control and Prevention’s Healthy Days Measures – population tracking of perceived physical and mental health over time. Health Qual Life Outcomes. 2003;1:37. PMID: 14498988
  • Zahran HS, Kobau R, Moriarty DG, et al. Health-related quality of life surveillance–United States, 1993-2002. MMWR Surveill Summ. 2005;54(4):1-35. PMID: 16251867

The above references details  regarding the reliability, validity, standardization, and responsiveness of the assessment for healthy adults.

Number of Items: 14

Completion time: 5 – 7 minutes

Online form available: Yes

Short form available: Modules can be used independently.

Translations available: Yes, Spanish (available here)

The Health Related QoL Questionnaire is made up of three different modules: 1) Healthy Days Core (4 items), 2) Activity Limitations (5 items0, and 3) Healthy Days Symptoms (5 items).

  • Individuals are prompted to think about how their health impacts their quality of life on a daily basis.
  • Individuals should begin with the Healthy Days Core Module and complete each of the questions before moving on to the Activity Limitations Module.
  • Directions are provided within the questionnaires (certain answers will direct you to a different module or a different part of the assessment).
  • Clinicians/researchers may provide assistance in filling out the physical form and caregivers may provide assistance as necessary.

Clinical Populations

  • Spinal cord injury: Andreson EM, Fouts BS, Romeis JC & Brownson CA. Performance of health-related quality of life instruments in a spinal cord injured population. Archives of Physical Medicine & Rehabilitation, 1999;5: 877-84.
  • Disability: Verbrugge L, Merrill S & Liu X. Measuring disability with parsimony. Disability & Rehabilitation. 1999;21(5-6): 295-306.

WHO Quality of Life Instrument

Purpose: To quantify an individual’s overall feelings of satisfaction and delight with their life in multiple domains such as health, relationships, family, and participation in work and organizations.

Recommended Use: For individuals with recent changes in health status. Can also be used to determine a baseline quality of life for individuals before they undergo a treatment or procedure.

Source: World Health Organization (WHO)

WHO QoL-100  (link to measure, administration and scoring)

Key References

  • The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med. 1995;41(10):1403-1409. PMID: 8560308
  • Development of the World Health Organization WHOQOL-BREF quality of life assessment. The WHOQOL Group. Psychol Med. 1998;28(3):551-558. PMID: 9626712
  • Skevington SM, O’Connell KA & the WHOQOL Group. Can we identify the poorest quality of life? Assessing the importance of quality of life using the WHOQOL-100. Quality of Life Research. 2004;13: 23-34. PMID: 15058784

The World Health Organization website and above references detail  the reliability, validity, standardization, and responsiveness of the assessment for healthy adults.

Number of Items: 100

Completion time: 25 – 35 minutes

Online form available: Yes

Short form available: Yes – 26 item version (WHO QoL-BREF)

Translations available: Yes

  • Individuals respond to each question using a 5-point Likert type scale ranging from 1 (Not at all) to 5 (An extreme amount) to most accurately describe aspects of related to their quality of life.
  • Clinicians/researchers should familiarize themselves with the testing manual and scoring guides before administering the test.
  • Clinicians/researchers may provide assistance in physically filling out the assessment form or conduct the assessment in an interview style. Caregivers may also provide assistance as needed.

Clinical Populations

  • Liver transplant: O’Carroll RE, Smith K, Couston M, Cossar JA & Hayes PC. A comparison of the WHOQOL-100 and the WHOQOL-BREF in detecting change in quality of life following liver transplantation. Quality of Life Research. 2000;9: 121-4.
  • Type 2 Diabetes: Abbasi-Ghahramanloo A, Soltani-Kermanshahi M, Mansori K, Khazaei-Pool M, Sohrabi M, Baradara HR, Talebloo Z & Gholami A. Comparison of SF-36 and WHOQoL-BREF in measuring quality of life in patient with type 2 diabetes. International Journal of General Medicine. 2020;13: 497-506.

SF-36 and SF-12

Purpose: To assess the health status and related quality of life of a patient.

Recommended Use: For individuals with recent changes in health status. Can also be used to determine a baseline quality of life for individuals before they undergo a treatment or procedure.

SF-36 and SF-12 (link to measures, administration, scoring and translations)

The SF-36 is free and available through the RAND Corporation. The SF-12 requires a license; follow the link to apply for a license through QualityMetric.

Key References

  • Stewart AL, Greenfield S, Hays RD, et al. Functional status and well-being of patients with chronic conditions. Results from the Medical Outcomes Study JAMA. 1989;262(7):907-913. PMID: 2754790
  • Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30(6):473-483. PMID: 1593914 
  • Ware JE Jr, Kosinski M, Bayliss MS, McHorney CA, Rogers WH, Raczek A. Comparison of methods for the scoring and statistical analysis of SF-36 health profile and summary measures: summary of results from the Medical Outcomes Study. Med Care. 1995;33(4 Suppl):AS264-AS279. PMID: 7723455
  • Ware J Jr, Kosinski M, Keller SD. A 12-Item Short-Form Health Survey: construction of scales and preliminary tests of reliability and validity. Med Care. 1996;34(3):220-233. PMID: 8628042

The above references detail the reliability, validity, standardization, and responsiveness of the assessment for healthy adults and those with chronic conditions.

Number of Items: 36 items

Completion time: 5 – 20 minutes

Online form available: Yes

Short form available: Yes – 12 item version (SF-12)

Translations available: Yes

  • The SF-36 includes eight health domains: 1) physical functioning; 2) limitations in social activities because of physical problems; 3) limitations in usual role activities because of emotional problems; 4) bodily pain; 5) general mental health (psychological distress and well-being); 6) social functioning; 7) vitality (energy and fatigue); and 8) general health perceptions.
  • Individuals are prompted to recall the past 4 weeks.
  • Questions include Likert scales or yes/no options.

Clinical Populations

  • Parkinson’s Disease: Steffen T & Seney M. Test-retest reliability and minimal detectable change on balance and ambulation tests, the 36-item short-form health survey, and the unified Parkinson disease rating scale in people with parkinsonism [published correction appears in Phys Ther. 2010 Mar;90(3):462]. Phys Ther. 2008;88(6):733-746. PMID: 18356292
  • Spinal Injury: Forchheimer M, McAweeney M & Tate DG. Use of the SF-36 among persons with spinal cord injury. Am J Phys Med Rehabil. 2004;83(5):390-395. PMID: 15100631
  • Stroke: Anderson C, Laubscher S & Burns R. Validation of the Short Form 36 (SF-36) health survey questionnaire among stroke patients. Stroke. 1996;27(10):1812-1816. PMID: 8841336

Symptom-Specific Quality of Life (QoL)

Tools that help to assess one’s perception of their well-being related to a specific facet, such as fatigue, cognitive functioning, pain or sleep.

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Neuro-QoL™ Fatigue

Purpose: To characterize the level of a person’s fatigue including sensation ranging from tiredness to an overwhelming, debilitating, and sustained sense of exhaustion that decreases one’s capacity for physical, functional, social, and mental activities.

Recommended Use: For individuals with neurological conditions to better understand how they experience fatigue.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

Neuro-QoL Fatigue(link to measure, instructions and scoring)

The above references detail the reliability, validity, standardization, and responsiveness of the assessment for adults with neurological impairments. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 19

Completion time: 5 – 10 minutes

Online form available: Yes

Short form available: Yes –

Translations available: Yes (available here)

  • Individuals respond to questions using a Likert 5-point scale ranging from 1 (Never) to 5 (Always) to characterize their level of fatigue during a typical day.
  • The assessment can be completed using paper and pencil or using a computer adapted test-bank that allows for completion on a computer. Patients are required to check the box corresponding to the most accurate description of their response to each item.
  • Assessment can be given with help from the clinician/researcher if the patient struggles to complete the form on their own.

Clinical Populations

  • Multiple sclerosis: Cook KF, Victorson DE, Cella D, Schalet BD & Miller D. Creating meaningful cut-scores for Neuro-QoL measures of fatigue, physical functioning, and sleep disturbances using standard setting with patients and providers. Quality of Life Research, 2015; 24, 3: 575-89.
  • Myasthenia gravis: Tran C, Bril V, Katzberg HD & Barnett C. Fatigue is a relevant outcome in patients with Myasthenia Gravis. Muscle & Nerve, 2018;58: 197-203.
  • Adult epilepsy: Nowinski CJ, Victorson D, Cavazos JE, Gershon R & Cella D. Neuro-QoL and the NIH Toolbox: Implications for epilepsy. Therapy, 2010;7(5): 533-40.

Neuro-QoL™ Cognitive Function (v2.0)

Purpose: To characterize an individual’s perceived difficulties in cognitive abilities or in the applications of such abilities to everyday tasks.

Recommended Use: For individuals with neurological conditions to better understand an individual’s perception of their own cognitive abilities ranging from time-tracking, financial tasks, memory, planning, and organization.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

Nuero-QoLCognitive Function and Short Form (link to measures, administration and scoring)

Key References

  • Cella D, Lai J-S, Nowinski CJ, Victorson D, Peterman A, Miller D et al. Neuro-QoL: Brief measures of health-related quality of life for clinical research in neurology. Neurology, 2012; 78: 1860-7. PMID: 22573626
  • Iverson GL, Marsh JM, Connors EJ, Terry DP. Normative Reference Values, Reliability, and Item-Level Symptom Endorsement for the PROMIS® v2.0 Cognitive Function-Short Forms 4a, 6a and 8a. Arch Clin Neuropsychol. 2021;36(7):1341-1349. PMID: 33454756
  • Iverson GL, Connors EJ, Marsh J, Terry DP. Examining Normative Reference Values and Item-Level Symptom Endorsement for the Quality of Life in Neurological Disorders (Neuro-QoL™) v2.0 Cognitive Function-Short Form. Arch Clin Neuropsychol. 2021;36(1):126-134. PMID: 32851403

The above references detail the reliability, validity, standardization, and responsiveness of the assessment for adults with neurological impairments. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 28 (long form)

Completion time: 10 – 12 minutes

Online form available: Yes

Short form available: Yes – 8 item version

Translations available: Yes (available here)

  • Individuals respond to questions using a Likert 5-point scale ranging from 5 (None) to 1 (Cannot do) to characterize an individual’s perceived level of difficulty with their cognitive function as it relates to their ability to complete necessary daily activities.
  • The assessment can be completed using paper and pencil or using a computer adapted test-bank that allows for completion on a computer. Patients are required to check the box corresponding to the most accurate description of their response to each item.
  • Assessment can be given with help from the clinician if the patient struggles to complete the form on their own.

Clinical Populations

  • Huntington disease: Lai J, Goodnight S, Downing NR, Ready RE, Paulsen JS, Kratz AL et al. Evaluating cognition in individuals with Huntington disease: Neuro-QoL cognitive functioning measures. Quality of Life Research, 2018; 27(3): 811-22. PMID: 31853881
  • Multiple sclerosis: Miller DM, Bethoux F, Victorson D, Nowinski CJ, Buono S, Lai J et al. Validating Neuro-QoL short forms and targeted scales with people who have multiple sclerosis. Multiple Sclerosis Journal, 2016; 22(6): 830-41.

PROMIS® Pain Interference

Purpose: To describe how much an individual’s pain is interfering with their daily life.

Recommended Use: For individuals with high levels of pain or chronic pain, should be used to determine how much pain affects an individual’s ability to complete their normal activities (can be used to determine if pain is the limiting factor).

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

PROMIS Pain Interference (link to measure, administration and scoring)

Key References 

  • Cella D, Riley W, Stone A, et al. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008. J Clin Epidemiol. 2010;63(11):1179-1194. PMID: 20685078
  • Hays RD, Spritzer KL, Schalet BD, Cella D. PROMIS®-29 v2.0 profile physical and mental health summary scores. Qual Life Res. 2018;27(7):1885-1891. PMID: 29569016

The above reference details the reliability, validity, standardization, and responsiveness of the assessment for healthy adults.

Number of Items: 1

Completion time: < 1 minute

Online form available: Yes

Short form available: No

Translations available: Yes (available here)

  • This assessment requires an individual to rank their pain intensity in the last 7 days using a Likert 11-point scale ranging from 0 (No pain) to 10 (Worst imaginable pain).
  • The assessment can be completed using paper and pencil or using a computer adapted test-bank that allows for completion on a computer. Patients are required to check the box corresponding to the most accurate description of their response to each item.
  • Assessment can be given with help from the clinician if the patient struggles to complete the form on their own.

Clinical Populations

  • Lower limb amputation: Morgan SJ, Friedly JL, Amtmann D, Salem R & Hafner BJ. Cross-sectional assessment of factors related to pain intensity and pain interference in lower limb prosthesis users. Archives of Physical Medicine and Rehabilitation. 2017;98: 105-13.
  • Chronic pain: Amtmann D, Cook KF, Jensen MP, Chen W-H, Choi S, Revicki D et al. Development of a PROMIS item bank to measure pain interference. PAIN. 2010;150: 173-82.

PROMIS® Sleep Disturbance

Purpose: To evaluate self-perceived sleep patterns, such as sleep quality, sleep depth, and restoration associated with sleep, in order to understand one’s satisfaction with and adequacy of their sleep.

Recommended Use: For individuals who report deficits in sleep to determine the quality of one’s sleep and how an individual perceives their own ability to sleep.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

PROMIS Sleep Disturbance (link to measure, administration, and scoring)

Key References

  • Cella D, Riley W, Stone A et al. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008. J Clin Epidemiol. 2010;63(11):1179-1194. PMID: 20685078
  • Yu L, Buysse DJ, Germain A, Moul DE, Stover A, Dodds NE, Johnston KL, Pilkonis PA. Development of short forms from the PROMIS™ sleep disturbance and Sleep-Related Impairment item banks. Behav Sleep Med. 2011 Dec 28;10(1):6-24. PMID: 22250775
  • Hays RD, Spritzer KL, Schalet BD, Cella D. PROMIS®-29 v2.0 profile physical and mental health summary scores. Qual Life Res. 2018;27(7):1885-1891. PMID: 29569016

The above references detail the reliability, validity, standardization, and responsiveness of the long and short forms for healthy adults. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 27 (long form)

Completion time: 8 – 12 minutes

Online form available: Yes

Short form available: Yes – 8 and 4 item versions

Translations available: Yes (available here)

  • Patients respond to statements using a Likert 5-point scale ranging from 5 (Not at all) to 1 (Very much) in order to characterize their sleep patterns in the last week.
  • Can be completed using paper and pencil or using a computer adapted test-bank that allows for completion on a computer. Patients are required to check the box corresponding to the most accurate description of their response to each item.
  • Assessment can be given with help from the clinician if the patient struggles to complete the form on their own.

Clinical Populations

  • Cancer: Jensen RE, King-Kallimanis BL, Sexton E, Reeve BB, Moinpour CM, Potosky, A.L et al. Measurement properties of PROMIS Sleep Disturbance short forms in a large ethnically diverse cancer cohort. Psychological Test and Assessment Modeling, 2016;58(2): 353-70.
  • Psychiatric inpatients: Strainge L, Sullivan MC, Blackmon JE, Cruess SE, Wheeler D & Cruess DG. PROMIS-Assessed sleep problems and physical health symptoms in adult psychiatric inpatients. Health Psychology, 2019; 38, No. 5: 376-85.

PROMIS® Sleep-Related Impairment

Purpose: To understand an individual’s perception of their alertness, sleepiness, and tiredness during the day in order to understand how sleep problems or impaired alertness may be affecting their function during wakefulness.

Recommended Use: For individuals who self-report sleep impairments, should be used to determine the amount that lack of sleep impacts abilities during waking hours.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

PROMIS Sleep-Related Impairment (link to long and short form measures, administration, and scoring)

Key References

  • Cella D, Riley W, Stone A et al. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008. J Clin Epidemiol. 2010;63(11):1179-1194. PMID: 20685078
  • Yu L, Buysse DJ, Germain A, Moul DE, Stover A, Dodds NE, Johnston KL, Pilkonis PA. Development of short forms from the PROMIS™ sleep disturbance and Sleep-Related Impairment item banks. Behav Sleep Med. 2011 Dec 28;10(1):6-24. PMID: 22250775

The above references detail the reliability, validity, standardization, and responsiveness of the long and short forms for healthy adults. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 16 (long form)

Completion time: 5 – 8 minutes

Online form available: Yes

Short form available: Yes – 8 and 4 item versions.

Translations available: Yes (available here)

  • Patients respond to statements using a Likert 5-point scale ranging from 1 (Not at all) to 5 (Very much) to characterize their experience with sleep-related impairments in the last week.
  • Can be completed using paper and pencil or using a computer adapted test-bank that allows for completion on a computer. Patients are required to check the box corresponding to the most accurate description of their response to each item.
  • Assessment can be given with help from the clinician if the patient struggles to complete the form on their own.

Clinical Populations

  • Atopic dermatitis: Lei DK, Yousaf M, Janmohamed SR, Vakharia PP, Chopra R, Sacotte R et al. Validation of Patient-Reported Outcomes Information System Sleep Disturbance and Sleep-Related Impairment in adults with atopic dermatitis. British Journal of Dermatology, 2020;183: 875-82.
  • Psychotic disorders: Blanchard JJ, Andrea A, Orth RD, Savage C, Bennett ME. Sleep disturbance and sleep-related impairment in psychotic disorders are related to both positive and negative symptoms. Psychiatry Research. 2020;86: 112857.
  • Type 2 diabetes: Zhu B, Quinn L, Fritschi C. Relationship and variation of diabetes related symptoms, sleep disturbance, and sleep-related impairment in adults with type 2 diabetes. Journal of Advanced Nursing. 2017;74: 689-97.
  • Stroke: Byun E, Kohen R, Becker KJ, Kirkness CJ, Khot S, Mitchell PH. Stroke impact symptoms are associated with sleep-related impairment. Heart & Lung. 2020;49: 117-22.

Mental Health

Tools that help assess one’s psychological and emotional well-being by asking questions that characterize the presence/absence, frequency, and/or intensity of specific thoughts or feelings, as they relate to stress, such as anger, anxiety and depression symptoms and social connectedness.

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PROMIS® Emotional Distress - Depression

Purpose: To characterize an individual’s depressive symptoms through their experience with loss and feelings of hopelessness, negative mood, decrease in positive affect, negative views of the self, and negative social cognition.

Recommended Use: For individuals who self-report as having lack of positive affect and to understanding how an intervention changes the persistence of negative thoughts and feelings over time.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

PROMIS – Depression (link to measure, administration, and scoring)

Key References

  • Cella D, Riley W, Stone A et al. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008. J Clin Epidemiol. 2010;63(11):1179-1194. PMID: 20685078
  • Hays RD, Spritzer KL, Schalet BD, Cella D. PROMIS®-29 v2.0 profile physical and mental health summary scores. Qual Life Res. 2018;27(7):1885-1891. PMID: 29569016

The PROMIS – Depression manual is a comprehensive guide to using the measure (and short form versions), including information on its development and testing with regard to reliability, validity, standardization, and responsiveness for adults and cancer patients. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 28

Completion time: 10 – 15 minutes

Online form available: Yes

Short form available: Yes – 8 item (8a and 8b), 6 item (6a) and 4 item (4a) version.

  • Guidance: In selecting between short forms, the difference is instrument length. The reliability and precision of the short forms within a domain is highly similar. If you are working with a sample in which you want the most precise measure, select the longest short form. If you have little room for additional measures but really wanted to capture something as a secondary outcome, select one of the shorter instruments.

Translations available: Yes (available here)

  • Patients respond to statements using a Likert 5-point scale ranging from 1 (Never) to 5 (Always) to characterize the frequency/severity of specific negative thoughts and feelings in the last week.
  • Assessment can be given with help from the clinician if the patient struggles to complete the form on their own.

Clinical Population

  • Cancer:

PROMIS – Depression (Cancer)

PROMIS® Emotional Distress - Anxiety

Purpose: To characterize an individual’s unpleasant thoughts and feelings related to fear, helplessness, worry, and hyperarousal.

Recommended Use: For individuals who have a history of anxiety, or recent change in health status with onset of mental health deficits, to understand how an individual experiences anxiety; how a health intervention changes the persistence and severity of negative thoughts and feelings over time.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

PROMIS – Anxiety (link to measure, administration, and scoring)

Key References

  • Cella D, Riley W, Stone A et al. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008. J Clin Epidemiol. 2010;63(11):1179-1194. PMID: 20685078
  • Hays RD, Spritzer KL, Schalet BD, Cella D. PROMIS®-29 v2.0 profile physical and mental health summary scores. Qual Life Res. 2018;27(7):1885-1891. PMID: 29569016

The PROMIS – Anxiety manual is a comprehensive guide to using the measure (and short form versions), including information on its development and testing with regard to reliability, validity, standardization, and responsiveness for adults and cancer patients. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 29

Completion time: 10 – 15 minutes

Online form available: Yes

Short form available: Yes – 8 item (8a), 7 item (7a), 6 item (6a) and 4 item (4a) versions.

  • Guidance: In selecting between short forms, the difference is instrument length. The reliability and precision of the short forms within a domain is highly similar. If you are working with a sample in which you want the most precise measure, select the longest short form. If you have little room for additional measures but really wanted to capture something as a secondary outcome, select one of the shorter instruments.

Translations available: Yes (available here)

  • Patients respond to statements using a Likert 5-point scale ranging from 1 (Never) to 5 (Always) to characterize the frequency/severity of specific negative thoughts and feelings in the last week.
  • Assessment can be given with help from the clinician if the patient struggles to complete the form on their own.

PROMIS® Emotional Distress - Anger (v1.1)

Purpose: To characterize an individual’s unpleasant thoughts and feelings related to irritability and anger.

Recommended Use: For individuals who have a history of anger issues, or recent change in health status with onset of mental health deficits, to understand how an individual experiences anger; how a health intervention changes the persistence and severity of negative thoughts and feelings over time.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

PROMIS – Anger (v1.1) (link to measure, administration, and scoring)

Key References

  • Cella D, Riley W, Stone A et al. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008. J Clin Epidemiol. 2010;63(11):1179-1194. PMID: 20685078
  • Hays RD, Spritzer KL, Schalet BD, Cella D. PROMIS®-29 v2.0 profile physical and mental health summary scores. Qual Life Res. 2018;27(7):1885-1891. PMID: 29569016

The PROMIS – Anger manual is a comprehensive guide to using the measure, including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 29

Completion time: 10 – 15 minutes

Online form available: Yes

Short form available: Yes – 5 item (Short Form 5a) version.

Translations available: Yes (available here)

  • Patients respond to statements using a Likert 5-point scale ranging from 1 (Never) to 5 (Always) to characterize the frequency of specific negative thoughts and feelings in the last week.
  • Assessment can be given with help from the clinician if the patient struggles to complete the form on their own.

Neuro-QoL™ Depression

Purpose: To characterize an individual’s depressive symptoms through their experience with loss and feelings of hopelessness, negative mood, decrease in positive affect, information-processing deficits, negative views of the self, and negative social cognition.

Recommended Use: For individuals with a history of depression or recent change in health status with onset of mental health deficits, can be used to understand how an individual experiences depression.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

Neuro-QoL Depression (link to measures, administration and scoring)

Key References

  • Cella D, Lai JS, Nowinski CJ, Victorson D et al. Neuro-QOL: brief measures of health-related quality of life for clinical research in neurology. Neurology. 2012 Jun 5;78(23):1860-7. PMID: 22573626
  • Koslowski AJ, Cella D, Nitsch KP, Heinemann AW. Evaluating individual change with quality of life in neurological disorders (Neuro-QoL) short forms. Archives of Physical Medicine and Rehabilitation, 2016; 97: 650-4.  PMID: 26740062

The above references detail the reliability, validity, standardization, and responsiveness of the assessment for healthy adults.

Number of Items: 24

Completion time: 5 – 12 minutes

Online form available: Yes         

Short form available: Yes – 8 item (Short Form 8a) version

Translations available: Yes (available here)

  • The assessment requires individuals to respond to questions using a Likert 5-point scale ranging from 1 (Never) to 5 (Always) to characterize their level of thoughts and feelings related to depression.
  • This assessment is focused on an individual’s thoughts and feelings related to hopelessness, negative self-affect, lack of emotion, and withdrawal.

Clinical Populations

  • Parkinson’s disease: Nowinski CJ, Siderowf A, Simuni T, Wortman C, Moy C & Cella D. Neuro-QoL health-related quality of life measurement system: Validation in Parkinson’s Disease. Movement Disorders. Vol. 31, No. 5: 725-33.
  • Multiple sclerosis: Medina LD, Torres S, Alvarez E, Valdez B, Nair KV. Patient-reported outcomes in multiple sclerosis: Validation of the quality of life in neurological disorders (Neuro-QoL) short forms. Multiple Sclerosis Journal – Experimental, Translational, Clinical. Oct 2019: 1-11.

Neuro-QoL™ Anxiety

Purpose: To characterize an individual’s unpleasant thoughts and feelings related to fear, helplessness, worry, and hyperarousal.

Recommended Use: For individuals with neurological conditions and have a history of anxiety, or recent change in health status with onset of mental health deficits, to understand how an individual experiences anxiety.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

Neuro-QoL Anxiety (link to measures, administration and scoring)

Key References

  • Cella D, Lai JS, Nowinski CJ, Victorson D et al. Neuro-QOL: brief measures of health-related quality of life for clinical research in neurology. Neurology. 2012 Jun 5;78(23):1860-7. PMID: 22573626
  • Koslowski AJ, Cella D, Nitsch KP, Heinemann AW. Evaluating individual change with quality of life in neurological disorders (Neuro-QoL) short forms. Archives of Physical Medicine and Rehabilitation, 2016; 97: 650-4.  PMID: 26740062

The above references detail the reliability, validity, standardization, and responsiveness of the assessment for healthy adults. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 21

Completion time: 5 – 12 minutes

Online form available: Yes

Short form available: Yes – 8 item (Short Form 8a) version

Translations available: Yes (available here)

  • Individuals respond to questions using a Likert 5-point scale ranging from 1 (Never) to 5 (Always) to characterize their level of thoughts and feelings related to anxiety.

Clinical Populations

  • Adults with epilepsy: Victorson D, Cavazos JE, Holmes GL et al. Validity of Neurology Quality-of-Life (Neuro-QoL) measurement system in adult epilepsy. Epilepsy & Behavior, 2014;31, 77-84.
  • Huntington’s disease: Carlozzi NE, Goodnight S, Kratz AL, Stout et al. Validation of Neuro-QoL and PROMIS Mental Health Patient Reported Outcome Measures in persons with Huntington disease. Journal of Huntington Disease. 2019; 8(4): 467-82.
  • Multiple Sclerosis: Miller DM, Bethoux F, Victorson D et al. Validating Neuro-QoL short forms and targeted scales with people who have multiple sclerosis. Mult Scler, 2016; 22(6): 830-41.
  • Stroke: Kozlowski AJ, Singh R, Victorson D et al. Agreement between responses from community-dwelling people with stroke and their proxies on the NIH Neurological Quality of Life (Neuro-QoL) short forms. Archives of Physical Medicine and Rehabilitation, 2015; 96: 1986-92.

Generalized Anxiety Disorder (GAD-7 and -2)

Purpose: This survey was developed based on Diagnostic and Statistical Manual of Mental Disorders-IV (DSM-IV) criteria, to help identify likely cases of Generalized Anxiety Disorders.

Recommended Use: For assessing symptom severity of Generalized Anxiety Disorder and monitoring change across time, although its responsiveness to change remains to be tested in treatment studies.

Source: PRIME-MD®

GAD-7 and GAD-2 (link to measures and scoring)

Key References

  • Spitzer RL, Kroenke K, Williams JB, Löwe B. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med. 2006;166(10):1092-1097. PMID: 16717171
  • Kroenke K, Spitzer RL, Williams JB, Monahan PO, Löwe B. Anxiety disorders in primary care: prevalence, impairment, comorbidity, and detection. Ann Intern Med. 2007;146:317-25. PMID: 17339617

The above references detail the reliability, validity, standardization, and responsiveness. Additional information about the GAD is available here.

Number of Items: 7

Completion time: 2 – 5 minutes

Online form available: Yes (available here or here)

Short form available: Yes – 2 item version (GAD-2); uses only the first two questions of the GAD-7, which represent the core anxiety symptoms.

Translations available: Over 50 (available here)

  • Individuals are asked to recall the last two weeks and respond to questions on a 4-point Likert scale 0 (not at all) to 3 (nearly every day).
  • The scores of 5, 10, and 15 are taken as cut off points for mild, moderate, and severe anxiety, respectively.

Patient Health Questionnaire (PHQ-9 and -2)

Purpose: To assess depression severity to guide treatment decisions.

Recommended Use: This instrument is used for making criteria-based diagnoses of depressive and other mental disorders commonly encountered in primary care. Can be self-administered or clinician administered.

Source: PRIME-MD®

PHQ-9 and PHQ-2 (link to measures and scoring)

Key Reference

  • Spitzer RL, Kroenke K, Williams JB. Validation and utility of a self-report version of PRIME-MD: the PHQ primary care study. Primary Care Evaluation of Mental Disorders. Patient Health Questionnaire. JAMA. 1999;282(18):1737-1744. PMID: 10568646

The above references detail the reliability, validity, standardization, and responsiveness of the assessment. Additional information about the PHQ is available here.

Number of Items: 9

Completion time: 2 – 5 minutes

Online form available: Yes (available here)

Short form available: Yes – 2 item version (PHQ-2); it uses only the first two questions of the PHQ-9, which represent the core depressive symptoms.

Translations available: Over 50 (available here)

  • Derived from the full 3-page Patient Health Questionnaire (PHQ), the PHQ-9 is used to help diagnose Major Depression:
    • If 5 or more of the 9 depressive symptom criteria have been present at least “more than half the days” in the past 2 weeks, and 1 of the symptoms is depressed mood or anhedonia.
    • Other depression is diagnosed if 2, 3, or 4 depressive symptoms have been present at least “more than half the days” in the past 2 weeks, and 1 of the symptoms is depressed mood or anhedonia.
    • One of the 9 symptom criteria (“thoughts that you would be better off dead or of hurting yourself in some way”) counts if present at all, regardless of duration.
  • A clinician scans the completed questionnaire, verifies positive responses, and applies diagnostic algorithms that are abbreviated at the bottom of each page. The PHQ assesses 8 diagnoses, divided into threshold disorders (disorders that correspond to specific DSM-IV diagnoses: major depressive disorder, panic disorder, other anxiety disorder, and bulimia nervosa), and subthreshold disorders (disorders whose criteria encompass fewer symptoms than are required for any specific DSM-IV diagnoses: other depressive disorder, probable alcohol abuse/dependence, somatoform, and binge eating disorder). As a severity measure, the PHQ-9 score can range from 0 to 27, since each of the 9 items can be scored from 0 (not at all) to 3 (nearly every day).

Geriatric Depression Scale (GDS)

Purpose: To assess the presence of depressive symptoms in older adults.

Recommended Use: As a screening tool for healthy, medically ill, or mild-to-moderately cognitively impaired older adults. It has been extensively used in community, acute care, and long-term care settings.

GDS and GDS-S (link to measures, administration and scoring)

Key References

  • Yesavage JA, Brink TL, Rose TL, et al. Development and validation of a geriatric depression screening scale: a preliminary report. J Psychiatr Res. 1983; 17:37-49. PMID: 7183759
  • Sheikh JI, Yesavage JA. Geriatric Depression Scale (GDS): Recent evidence and development of a shorter version. Clinical Gerontology: A Guide to Assessment and Intervention. 165-173, NY: The Haworth Press, 1986.
  • Luchsinger JA, Burgio L, Mittelman M, Dunner I, Levine JA, Hoyos C, Tipiani D, Henriquez Y, Kong J, Silver S, Ramirez M, Teresi JA. Comparative Effectiveness of 2 Interventions for Hispanic Caregivers of Persons with Dementia. J Am Geriatr Soc. 2018 Sep;66(9):1708-1715. PMID: 30084133

The above references detail the reliability, validity, standardization, and responsiveness of the assessment for clinical and healthy, as well as for Hispanic, older adults.

Number of Items: 30

Completion time: 5 – 10 minutes

Online form available: Yes (available here)

Short form available:  Yes – 15 item version (GDS-S)

  • Users respond in a “Yes/No” format.
  • Questions focus on an individual’s mood, participation in activities, outlook on life, concern about cognitive abilities.
  • Scores range from 0 to 30 (or 0 to 15 for the GDS-S), where the higher the score, the more severe the depression is likely to be.

UCLA (Revised) Loneliness Scale

Purpose: To assess one’s feelings of loneliness or social isolation.

Recommended use: For surveying via phone, those who are may be in socially isolated (rural) areas.

R-UCLA Loneliness Scale (link to measure)

Key References 

  • Hughes ME, Waite LJ, Hawkley LC & Cacioppo JT. A short scale for measuring loneliness in large surveys: Results from two population-based studies. Research on Aging, 2004;6(6), 655–672. PMID: 18504506
  • Russell, D. The UCLA Loneliness Scale (Version 3): Reliability, validity, and factor structure. Journal of Personality Assessment, 1996;66, 20–40.

The above references detail the reliability, validity, standardization, and responsiveness of the assessment for community-dwelling adults.

Number of Items: 3

Completion Time: < 1 minute

  • Patients are asked how they feel about different aspects of your life. For each one, they report how often they feel that way.
  • Each question is rated on a 3-point scale: 1 = Hardly Ever; 2 = Some of the Time; 3 = Often. All items are summed to give a total score.

Condition Specific

Tools to help assess individual’s health and functioning who have a clinical diagnosis.

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Parkinson’s Disease Questionnaire (PDQ)

Purpose: To characterize the effect of PD on multiple domains of a person’s life including daily activities, physical health, mental health, and cognitive function.

Recommended Use: For individuals diagnosed with PD, which can be administered throughout the disease progression to understand how PD affects their daily life, physical, and mental health.

PDQ-39 (link to measures, administration and scoring)

A license is required for use of the PDQ-39 and PDQ-8, however, it some cases it may be free of charge for certain uses including publicly funded healthcare or academic study.

Key References

  • Jenkinson C, Fitzpatrick R, Peto V, Greenhall R, Hyman N. The Parkinson’s Disease Questionnaire (PDQ-39): Development and validation of a Parkinson’s disease summary index score. Age and Aging, 1997;26: 353-7.
  • Jenkinson C, Fitzpatrick R, Peto V, Greenhall R and Hyman N. The PDQ-8: Development and validation of a short-form Parkinson’s disease questionnaire. Psychology and Health. 1997; 12 (6): 805-814.
  • Peto V, Jenkinson C, Fitzpatrick R. PDQ-39: A review of the development, validation and application of a Parkinson’s disease quality of life questionnaire and its associated measures. J Neurology, 1998; 245: Suppl 1 S10-4.
  • Damiano A.M., Snyder C., Strausser B. and Willian M. A review of health-related quality-of-life concepts and measures for Parkinson’s disease. Quality of Life Res. 1999; 8(3): 235-243.
  • Marinus J, Ramaker C, van Hilten JJ, Stiggelbout AM. Health related quality of life in Parkinson’s disease: A systematic review of disease specific instruments. Journal of Neurology, Neurosurgery, and Psychiatry, 2002;72: 241-8.
  • Morley D, Dummett S, Kelly L, Dawson J, Jenkinson C. An electronic version of the PDQ-39: acceptability to respondents and assessment of alternative response formats. 2014; 4 (3): 467-72.
  • Morley D, Dummett S, Kelly L, Dawson J, Jenkinson C. Evaluating the psychometric properties of an e-based version of the 39-item Parkinson’s Disease Questionnaire. Health and Quality of Life Outcomes. 2015; 13(1):5
  • Hagell P & Nygren, C. The 39 item Parkinson’s disease questionnaire (PDQ-39) revisited: Implications for evidence-based medicine. Journal of Neurology, Neurosurgery, and Psychiatry, 2007;478: 1191-8.

The above references detail the reliability, validity, standardization, and responsiveness of this assessment.

Number of Items: 39

Completion time: 15 – 20 minutes

Online form available: Yes

Short form available: Yes – 8 item version (PDQ-8)

Translations available: Yes

  • Individuals consider their abilities and functioning in the past month and respond to each statement using a 5-point Likert scale ranging from 0 (Never) to 5 (Always).
  • The higher the overall score and in each domain, the higher the level of functionality the individual has.

Stroke Impact Scale (SIS)

Purpose: To determine how a stroke has impacted an individual’s life following their hospitalization and initial recovery; the SIS short form (SIS-16) was developed as a brief, stand-alone tool for measuring the physical aspects of stroke recovery.

Recommended Use: For individuals who have experienced a stroke, most effective in understanding a new baseline of functioning.

Source: University of Kansas Medical Center

SIS and SIS-16 (link to measure, administration and scoring)

Key References

  • Lai S-M, Studenski S, Duncan PW, & Perera S. Persisting consequences of stroke measured by the Stroke Impact Scale. Stroke, 2002;33: 1840-4.
  • Vellone E, Savini, S, Fida R, Dickson VV, Melkus GD et al. Psychometric evaluation of the Stroke Impact Scale 3.0. Journal of Cardiovascular Nursing. 2015;30, (3): 229-41.
  • Lin K, Fu T, Wu C, Wang Y, Liu J, Hsieh C, Lin S. Minimal detectable change and clinically important difference of the Stroke Impact Scale in stroke patients. Neurorehabilitation and Neural Repair, 2010;24(5): 486-92.

The above references detail the reliability, validity, standardization, and responsiveness of this assessment.

Number of Items: 59

Completion time: 20 – 25 minutes

Online form available: Yes

Short form available: Yes – 16-item version (SIS-16)

Translations available: Yes (available here)

  • Assesses eight domains that can be affected by stroke such as physical function, memory/thinking, mood, communication, activities of daily living, functional mobility in the home and community, hand use, and participation in meaningful activities.
  • Individuals respond to each statement using a 5-point Likert scale ranging from 5 (most functional) to 1 (least functional). The last question involves ranking recover on a scale of 0 to 100.
  • Scoring is based on the scores on the Likert-scale indicated by the patient. The more 5s, the more recovery and the less the stroke has impacted functionality.
  • Researchers/clinicians may provide assistance in filling out the form and with comprehension. Caregivers are also able to offer assistance

Health Behavior Change

Tools that help assess one’s ability and readiness to implement personal habits and attitudes to prevent disease.

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Patient Activation Measure (PAM)

Purpose: To assess a patient’s ability to change and navigate the healthcare system in relation to changes in health. The measure can help determine if an individual is able to take care of their own health needs through activation of themselves and the healthcare system.

Recommended Use: For those diagnosed with chronic illnesses or recent changes in health status; by researchers, clinicians, and organizations to understand accessibility within their own systems.

Source: Insignia Health®

The PAM-13 and PAM-10 are available exclusively here via Insignia Health® for an annual license fee. (the original PAM-22 measure is no longer a recommended version).

Key Reference

  • Hibbard JH, Stockard J, Mahoney ER, Tusler M. Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res. 2004;39(4 Pt 1):1005-1026. PMID: 15230939
  • Hibbard JH, Mahoney ER, Stockard J, Tusler M. Development and testing of a short form of the patient activation measure. Health Serv Res. 2005 Dec;40(6 Pt 1):1918-30. PMID: 16336556

The above references detail the reliability, validity, standardization, and responsiveness of this assessment.

Number of Items: 13

Completion time: 3-7 minutes

Online form available: Yes

Short form available: Yes – 10 item version (PAM-10)

Translations available: Yes

  • Patients respond to a series of 13 (or 10) statements on a 4-point Likert scale (Disagree strongly, disagree, agree, strongly agree, or N/A) that most accurately describes how they feel.
  • The measure is made up of statements that individuals typically say about their health and cover domains such as ability to take care of oneself, lifestyle changes, navigating the healthcare system, and problem solving.
  • Researchers/clinicians can provide assistance with filling out the form/comprehensions of the statements. Caregivers may also provide assistance if necessary.
  • The test is scored by computing a raw score as laid out in the original measure development. Higher scores are correlated with a greater ability to adapt to changes in their health and create change in their life.

Clinical Populations

  • Inpatient Care: Prey JE, Qian M, Restaino S, et al. Reliability and validity of the patient activation measure in hospitalized patients. Patient Educ Couns. 2016;99(12):2026-2033.
  • Schizophrenia/Substance Use: Melby K, Nygard M, Brobakke MF, Grawe RW, Guzey IC, Reitan SK, Lara-Cabrera ML. Test-retest reliability of the Patient Activation Measure-13 in adults with substance use disorders and schizophrenia spectrum disorders. International Journal of Environmental Research and Public Health, 2021; 18: 1185.
  • Older adults with comorbid conditions: Skolasky RL, Green, AF, Scharfstein D, Boult C, Reider L, Wegener, ST. Psychometric properties of the Patient Activation Measure among multimorbid older adults. Health Services Research, 2011; 46, 2: 457-78.

Readiness to Change Questionnaire (RCQ)

Purpose: To provide a short and convenient assessment of a drinker’s stage of change, which helps a clinician/researcher understand their perceived readiness to change (curb) excessive drinking habits.

Recommended Use: As a baseline measure or to tracking change in readiness over time; in conjunction with brief, opportunistic interventions with excessive drinkers.

RQC (link to measure, administration and scoring)

Key References

  • Rollnick S, Heather N, Gold R, Hall W. Development of a short ‘readiness to change’ questionnaire for use in brief, opportunistic interventions among excessive drinkers. Br J Addict. 1992;87(5):743-754. PMID: 1591525
  • Hannöver W, Thyrian JR, Hapke U, Rumpf HJ, Meyer C, John U. The readiness to change questionnaire in subjects with hazardous alcohol consumption, alcohol misuse and dependence in a general population survey. Alcohol Alcohol. 2002;37(4):362-369. PMID: 12107039
  • Richards DK, Morera OF, Cabriales JA, Smith JC, Field CA. Factor, Concurrent and Predictive Validity of the Readiness to Change Questionnaire [Treatment Version] Among Non-Treatment-Seeking Individuals. Alcohol Alcohol. 2020 Jun 25;55(4):409-415. doi: 10.1093/alcalc/agaa021. PMID: 32318693

The user’s manual and above references detail the reliability, validity, standardization, and responsiveness of this assessment.

Number of Items: 12

Completion time: 3 – 6 minutes

Online form available: Yes

Short form available: No

Translations available: Yes

Self-Efficacy

Tools to help assess one’s beliefs in their capacity to execute behaviors necessary to produce specific performance and health status. Self-efficacy reflects confidence in the ability to exert control over one’s own motivation, behavior, and social environment.

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Falls Efficacy Scale International (FES-I)

Purpose: To assess an individual’s fear of falling within the home and community environment.

Recommended Use: Via interview format, for older adults with a recent change in health status or that have experienced recent falls.

Source: Prevention of Falls Network Europe (ProFaNE)

FES-I (link to measure, administration and scoring)

Key References (validation for community-dwelling older adults)

  • Huang TT, Wang WS. Comparison of three established measures of fear of falling in community-dwelling older adults: psychometric testing. Int J Nurs Stud. 2009;46(10):1313-1319. PMID: 19394017
  • Delbaere K, Close JC, Mikolaizak AS, Sachdev PS, Brodaty H, Lord SR. The Falls Efficacy Scale International (FES-I). A comprehensive longitudinal validation study. Age Ageing. 2010;39(2):210-216. PMID: 20061508

The above references detail the reliability, validity, standardization, and responsiveness of this assessment.

Number of Items: 16

Completion time: 5 – 10 minutes

Online form available: Yes

Short form available: Yes – 7-item version.

Translations available: Yes (available here)

  • Individuals rank their concern of falling on a 4-point Likert scale from 1 (Not at all concerned) to 4 (very concerned) in multiple home and community environments.
  • Scoring for this assessment is based on the total number an individual obtains on the items.
  • Higher scores are indicative of a higher concern for falling in the home and community.
  • Individuals will fill out the form indicating their concern for falling in each of the locations or during each activity laid out on the testing document.
  • Clinicians/researchers may provide assistance as needed in the filling out of the form and caregivers may also assist as needed.

Clinical Populations

  • Chronic stroke: Belgen, B., Beninato, M., Sullivan, P.E., Narielwalla, K. (2006). The association of balance capacity and falls self-efficacy with history of falling in community-dwelling people with chronic stroke. Archives of Physical Medicine and Rehabilitation. 87: 554-61.
  • Hemiplegic stroke: Park, E.-Y., Lee, Y.-J., & Choi, Y.-I. (2018). The sensitivity and specificity of the Falls Efficacy Scale and the Activities-specific Balance Confidence Scale for hemiplegic stroke patients. The Journal of Physical Therapy Science. 30: 741-3.

Activities-Specific Balance Confidence Scale (ABC)

Purpose: To assess confidence in performing various activities without losing balance or experiencing a sense of unsteadiness. It was designed to include a wider continuum of activity difficulty and more detailed item descriptors than the Falls Efficacy Scale (FES).

Recommended Use: To measure confidence after a fall and change in confidence over time.

ABC (link to measure, administration and scoring)

Key References

  • Powell LE, Myers AM. The Activities-specific Balance Confidence (ABC) Scale. J Gerontol A Biol Sci Med Sci. 1995;50A(1):M28-M34. PMID: 7814786
  • Filiatrault J, Gauvin L, Fournier M, et al. Evidence of the psychometric qualities of a simplified version of the Activities-specific Balance Confidence scale for community-dwelling seniors. Arch Phys Med Rehabil. 2007;88(5):664-672. PMID: 17466738
  • Huang TT, Wang WS. Comparison of three established measures of fear of falling in community-dwelling older adults: psychometric testing. Int J Nurs Stud. 2009;46(10):1313-1319. PMID: 19394017
  • Schepens S, Goldberg A, Wallace M. The short version of the Activities-specific Balance Confidence (ABC) scale: its validity, reliability, and relationship to balance impairment and falls in older adults. Arch Gerontol Geriatr. 2010 Jul-Aug;51(1):9-12. PMID: 19615762
  • Skipper A & Ellis R. Examining the Validity and Reliability of the ABC-6 in Underserved Older Adults. Journal of Applied Gerontology, 2015; 34(6), 761-778. PMID: 24652895

The above references detail the reliability, validity, standardization, and responsiveness of this assessment for community-dwelling older adults.

Number of Items: 16

Completion time: 5 – 8 minutes

Online form available: Yes

Short form available: Yes – 6 item version (ABC-6) is available for purchase

Translations available: Yes (available here)

PROMIS® General Self-Efficacy

Purpose: To characterize an individual’s ability to perform behaviors and tasks that help them manage various situations, problems, and events that they may encounter in their daily lives in order to assess their ability to be independent and effective in those situations.

Recommended Use: For individuals who have had recent changes in health status or have impaired insight into their deficits.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

PROMIS General Self-Efficacy (link to measure, administration and scoring)

Key Reference

  • Salsman JM, Schalet BD, Merluzzi TV, et al. Calibration and initial validation of a general self-efficacy item bank and short form for the NIH PROMIS®Qual Life Res. 2019;28(9):2513-2523. PMID: 31140041

The above reference and PROMIS – Self Efficacy user manual is a comprehensive guide to using the measure, including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 10

Completion time: 3 – 5 minutes

Online form available: Yes

Short form available: Yes – 4 item (Short Form 4a) version

Translations available: Yes (available here)

  • Patients respond to a series of statements using a Likert-5 point scale ranging from 1 (I am not at all confident) to 5 (I am very confident) in order to assess their level of confidence in managing various situations, problems, and events.

Clinical Populations

  • Cancer: Salsman JM, Park CL, Hahn EA, Snyder MA, George LS, Steger MG, Merluzzi T, & Cella D. Refining and supplementing candidate measures of psychological well-being for the NIH PROMIS: Qualitative results from a mixed cancer sample. Quality Life Research. 2018; 27(9): 2471-6.

PROMIS® Self-Efficacy for Managing Chronic Conditions – Managing Daily Activities

Purpose: To characterize one’s confidence in their ability to complete their activities of daily living without assistance effectively, such as exercise, sexual activity, and managing these activities in challenging situations such as traveling.

Recommended Use: For individuals with chronic conditions.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

MCCs – Managing Daily Activities (link to measure, administration and scoring)

Key Reference

  • Gruber-Baldini AL, Velozo C, Romero S, Shulman LM. Validation of the PROMIS® measures of self-efficacy for managing chronic conditions. Qual Life Res. 2017;26(7):1915-1924. PMID: 28239781

The above reference and PROMIS – Self Efficacy user manual is a comprehensive guide to using the measure, including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 35

Completion time: 10 – 20 minutes

Online form available: Yes

Short form available: Yes – 8 item (8a) and 4 item (4a) versions

Translations available: Yes (available here)

  • Patients respond to statements using a Likert 5-point scale ranging from 1 (I am not confident at all) to 5 (I am very confident) in order to characterize their ability to complete necessary daily activities.

PROMIS® Self-Efficacy for Managing Chronic Conditions – Managing Medications and Treatments

Purpose: To evaluate an individual’s confidence in managing medication schedules, treatments, medication refill, and adverse side effects independently.

Recommended Use: For individuals with chronic conditions.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

MCCs – Managing Medications and Treatments (link to measure, administration and scoring)

Key Reference

  • Gruber-Baldini AL, Velozo C, Romero S, Shulman LM. Validation of the PROMIS® measures of self-efficacy for managing chronic conditions. Qual Life Res. 2017;26(7):1915-1924. PMID: 28239781

The above reference and PROMIS – Self Efficacy user manual is a comprehensive guide to using the measure, including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 26

Completion time: 5 – 15 minutes

Online form available: Yes

Short form available: Yes – 8 item (8a) and 4 item (4a) versions

Translations available: Yes (available here)

  • Patients respond to statements using a Likert 5-point scale ranging from 1 (I am not confident at all) to 5 (I am very confident) in order to assess their confidence in their ability to perform tasks relating to their medications and treatments of their chronic conditions.
  • The assessment evaluates an individual’s confidence in managing difficult medication schedules and managing their routine when travelling, running out of medication, or when adverse effects are experienced

PROMIS® Self-Efficacy for Managing Chronic Conditions – Managing Symptoms

Purpose: To evaluate an individual’s confidence in managing symptoms of their chronic condition(s).

Recommended Use: For individuals with chronic conditions.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

MCCs – Managing Symptoms (link to measure, administration and scoring)

Key Reference

  • Gruber-Baldini AL, Velozo C, Romero S, Shulman LM. Validation of the PROMIS® measures of self-efficacy for managing chronic conditions. Qual Life Res. 2017;26(7):1915-1924. PMID: 28239781

The above reference and PROMIS – Self Efficacy user manual is a comprehensive guide to using the measure, including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 28

Completion time: 5 – 15 minutes

Online form available: Yes

Short form available: Yes – 8 item (8a) and 4 item (4a) versions

Translations available: Yes (available here)

  • Patients respond to statements using a Likert 5-point scale ranging from 1 (I am not confident at all) to 5 (I am very confident) in order to assess their confidence in their ability to effectively manage symptoms of their chronic condition(s).

PROMIS® Self-Efficacy for Managing Chronic Conditions – Managing Emotions

Purpose: To evaluate an individual’s confidence in managing their emotions around their chronic condition(s).

Recommended Use: For individuals with chronic conditions.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

MCCs – Managing Emotions (link to measure, administration and scoring)

Key Reference

  • Gruber-Baldini AL, Velozo C, Romero S, Shulman LM. Validation of the PROMIS® measures of self-efficacy for managing chronic conditions. Qual Life Res. 2017;26(7):1915-1924. PMID: 28239781

The above reference and PROMIS – Self Efficacy user manual is a comprehensive guide to using the measure, including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 26

Completion time: 5 – 15 minutes

Online form available: Yes

Short form available: Yes – 8 item (8a) and 4 item (4a) versions

Translations available: Yes (available here)

  • Patients respond to statements using a Likert 5-point scale ranging from 1 (I am not confident at all) to 5 (I am very confident) in order to assess their confidence in their ability to manage emotions around their chronic condition(s).

PROMIS® Self-Efficacy for Managing Chronic Conditions – Managing Social Interactions

Purpose: To evaluate an individual’s ability to participate in social activities including their ability to ask for help and communicate with others about their medical condition.

Recommended Use: For individuals with chronic conditions.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

MCCs – Managing Social Interactions (link to measure, administration and scoring)

Key Reference

  • Gruber-Baldini AL, Velozo C, Romero S, Shulman LM. Validation of the PROMIS® measures of self-efficacy for managing chronic conditions. Qual Life Res. 2017;26(7):1915-1924. PMID: 28239781

The above reference and PROMIS – Self Efficacy user manual is a comprehensive guide to using the measure, including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 23

Completion time: 8 – 12 minutes

Online form available: Yes

Short form available: Yes – 8 item (8a) and 4 item (4a) versions

Translations available: Yes (available here)

  • Patients respond to statements using a Likert 5-point scale ranging from 1 (I am not at all confident) to 5 (I am very confident) to evaluate their confidence in their ability to manage social interactions in their daily lives.

Perceived Support

Tools that help assess one’s own perception of how individuals perceive friends, colleagues and family members as available to provide functional and overall support during times of need.

This is an accordion element with a series of buttons that open and close related content panels.

PROMIS® Emotional Support (v2.0)

Purpose: To evaluate one’s perceived feelings of being valued as a person in their daily life; in short, having confidant relationships.

Recommended Use: For individuals who have had a recent change in health status.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

PROMIS – Emotional Support (v2.0) (link to measure, administration and scoring)

Key Reference

  • Cella D, Riley W, Stone A et al. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008. J Clin Epidemiol. 2010;63(11):1179-1194. PMID: 20685078

The PROMIS – Emotional Support user manual is a comprehensive guide to using the measure, including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 16

Completion time: 3 – 8 minutes

Online form available: Yes

Short form available: Yes – 8 item (8a), 6 item (6a) and 4 item (4a) versions

Translations available: Yes (available here)

  • Patients respond to statements using a Likert 5-point scale ranging from 1 (Never) to 5 (Always) in order to evaluate their level of perceived emotional support in their daily life and activities.

Clinical Populations

  • Breast cancer: Segrin C, Badger T & Pasvogel A. Loneliness and emotional support predict physical and psychological distress in Latinas with breast cancer and their supportive partners. The Open Psychology Journal. 2015;8: 105-12.
  • Upper extremity disability: Nota SPFT, Spit SA, Oosterhoff TCH et al. Is social support associated with upper extremity disability? Clinical Orthopaedic and Related Research. 2016;474: 1830-6.

PROMIS® Informational Support (v2.0)

Purpose: To describe an individual’s perceived availability of helpful information or advice.

Recommended Use: For individuals who have had recent changes in health status, can also be used to help businesses, researchers, or health care constituents understand how people perceive access to information within their systems.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

PROMIS – Informational Support (v2.0) (link to measure, instructions and scoring)

Key Reference

  • Cella D, Riley W, Stone A et al. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008. J Clin Epidemiol. 2010;63(11):1179-1194. PMID: 20685078

The above reference and the PROMIS – Informational Support user manual is a comprehensive guide to using the measure, including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 10

Completion time: 2 – 5 minutes

Online form available: Yes

Short form available: Yes – 8 item (8a), 6 item (6a) and 4 item (4a) versions

Translations available: Yes (available here)

  • Individuals respond to statements using a Likert 5-point scale ranging from 1 (Never) to 5 (Always) in order to describe the relative availability of informational support in their daily lives.

Clinical Populations

  • Breast cancer: Segrin C, Badger T & Pasvogel A. Loneliness and emotional support predict physical and psychological distress in Latinas with breast cancer and their supportive partners. The Open Psychology Journal. 2015;8: 105-12.
  • Upper extremity disability: Nota SPFT, Spit SA, Oosterhoff TCH et al. Is social support associated with upper extremity disability? Clinical Orthopaedic and Related Research. 2016;474: 1830-6.

PROMIS® Instrumental Support

Purpose: To describe an individual’s perceived knowledge of availability of assistance with material, cognitive, or task performance within their daily lives.

Recommended Use: For individuals who have had recent changes in health status; to understand how individuals perceive their amount of resources within a community, clinical, or research setting.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

PROMIS – Instrumental Support (v2.0) (link to measure, instructions and scoring)

Key Reference

  • Cella D, Riley W, Stone A et al. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008. J Clin Epidemiol. 2010;63(11):1179-1194. PMID: 20685078

The above reference and the PROMIS – Instrumental Support user manual is a comprehensive guide to using the measure (and short form versions), including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 11

Completion time: 2 – 5 minutes

Online form available: Yes

Short form available: Yes – 8 item (8a), 6 item (6a) and 4 item (4a) versions

Translations available: Yes (available here)

  • Individuals respond to questions using a Likert 5-point scale ranging from 1 (Never) to 5 (Always) to characterize the availability of instrumental support in their daily lives.
  • Can be completed using paper and pencil or using a computer adapted test-bank that allows for completion on a computer. Patients are required to check the box corresponding to the most accurate description of their response to each item.
  • Assessment can be given with help from the clinician if the patient struggles to complete the form on their own.

Clinical Populations

  • Breast cancer: Segrin C, Badger T & Pasvogel A. Loneliness and emotional support predict physical and psychological distress in Latinas with breast cancer and their supportive partners. The Open Psychology Journal. 2015;8: 105-12.
  • Upper extremity disability: Nota SPFT, Spit SA, Oosterhoff TCH et al. Is social support associated with upper extremity disability? Clinical Orthopaedic and Related Research. 2016;474: 1830-6.

The Multidimensional Scale of Perceived Social Support (MSPSS)

Purpose: To characterize an individual’s level of social support and their ability to identify individuals and resources who can support them regardless of medical status and changes.

Recommended Use: For individuals with recent changes in health status especially relating to the level of care or assist they will need for daily activities.

MSPSS (link to measure, instructions and scoring)

Key References

  • Zimet GD, Dahlem NW, Zimet SG, Farley GK. The Multidimensional Scale of Perceived Social Support. Journal of Personality Assessment. 1988;52:30-41.
  • Zimet GD, Powell SS, Farley GK, Werkman S, Berkoff KA. Psychometric characteristics of the Multidimensional Scale of Perceived Social Support. Journal of Personality Assessment, 1990;55:610-17.
  • Dahlem NW, Zimet GD, Walker RR. The Multidimensional Scale of Perceived Social Support: A confirmation study. Journal of Clinical Psychology, 1991;47:756-61.
  • Cecil H, Stanley MA, Carrion PG, Swann A. Psychometric properties of the MSPSS and NOS in psychiatric outpatients. Journal of Clinical Psychology, 1995;51:593-602.
  • Stanley MA, Beck JG & Zebb BJ, Psychometric Properties of the MSPSS in older adults, Aging and Mental Health 1998;2:186-193.

The measurement tool landing page and above references detail the reliability and validity of the assessment for community-dwelling adults.

Number of Items: 12

Completion time: 3 – 6 minutes

Online form available: Yes

Short form available: No

Translations available: Yes (available here)

  • Individuals respond to each statement using a 7-point Likert type scale ranging from 1 (very strongly disagree) to 7 (very strongly agree).
  • A higher score is associated with higher levels of perceived support.

Social Role Performance

Tools that help assess one’s ability to perform activities that relate to their social roles and responsibilities (as mother/ father, grandmother/father, friend, worker, caregiver, neighbor).

This is an accordion element with a series of buttons that open and close related content panels.

PROMIS® Ability to Participate in Social Roles and Activities (v2.0)

Purpose: To assess one’s perceived ability to perform usual social roles and activities.

Recommended Use: Most effective in individuals that report difficulties in social interactions or have impaired insight into deficits.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

PROMIS – Ability to Participate in Social Roles and Activities (v2.0) (link to measure, instructions and scoring)

Key References

  • Hahn EA, Kallen MA, Jensen RE, et al. Measuring social function in diverse cancer populations: Evaluation of measurement equivalence of the Patient Reported Outcomes Measurement Information System® (PROMIS®) Ability to Participate in Social Roles and Activities short form. Psychol Test Assess Model. 2016;58(2):403-421. PMID: 30221102
  • van Leeuwen LM, Tamminga SJ, Ravinskaya M, et al. Proposal to extend the PROMIS® item bank v2.0 ‘Ability to Participate in Social Roles and Activities’: item generation and content validity. Qual Life Res. 2020;29(10):2851-2861. PMID: 32488684

The above references and the PROMIS – Ability to Participate in Social Roles and Activities (v2.0) user manual is a comprehensive guide to using the measure (and short form versions), including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 35

Completion time: 12 – 18 minutes

Short form available: Yes – 8 item (8a), 6 item (6a) and 4 item (4a) versions

  • Guidance: In selecting between short forms, the difference is instrument length. The reliability and precision of the short forms within a domain is highly similar. If you are working with a sample in which you want the most precise measure, select the longest short form. If you have little room for additional measures but really wanted to capture something as a secondary outcome, select one of the shorter instruments.

Online form available: Yes

Translations available: Yes (available here)

  • Patients are asked to rate their ability to participate in the social roles and activities in their lives using a Likert-5 point scale ranging from 5 (never) to 1 (always).
  • Can be completed using paper and pencil or using a computer adapted test-bank that allows for completion on a computer. Patients are required to check the box corresponding to the most accurate description of their response to each item.
  • Can be given with help from the clinician if the patient struggles to complete the form on their own.

Clinical Populations

  • Cancer: Hahn EA, Kallen MA, Jensen RE, Potosky AL, Moinpour CM, Ramirez M, et al. Measuring social function in diverse cancer populations: Evaluation of measurement equivalence of the Patient Reported Outcomes Measurement Information System (PROMIS) Ability to Participate in Social Roles and Activities short form. Psychological Test and Assessment Modeling. 2016;58(2): 403-21.
  • Spinal cord injury: Heinemann AW, Kisala PA, Hahn EA & Tulsky DS. Development and psychometric characteristics of the SCI-QOL Ability to Participate and Satisfaction with Social Roles and Activities item banks and short forms. The Journal of Spinal Cord Medicine. 2015;38, 3: 397-408.
  • Outpatient rehabilitation: Tamminga SJ, van Vree FM, Volker G, Roorda LD, Terwee CB, Goossens PH & Vliet Vlieland TPM. Changes in the ability to participate in and satisfaction with social roles and activities in patients in outpatient rehabilitation. Journal of Patient-Reported Outcomes. 2020;4: 73.

Neuro-QoL™ Ability to Participate in Social Roles and Activities

Purpose: To assess one’s perceived ability to perform usual social roles and activities.

Recommended Use: For individuals with neurological conditions.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

Neuro-QoL Ability to Participate in Social Roles and Activities (link to measure, instructions and scoring)

Key References

  • Gershon RC, Lai JS, Bode R, et al. Neuro-QOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing. Qual Life Res. 2012;21(3):475-486. PMID: 21874314
  • Kozlowski AJ, Singh R, Victorson D, et al. Agreement Between Responses From Community-Dwelling Persons With Stroke and Their Proxies on the NIH Neurological Quality of Life (Neuro-QoL) Short Forms. Arch Phys Med Rehabil. 2015;96(11):1986-92.e14. PMID: 26209471
  • Kozlowski AJ, Cella D, Nitsch KP, Heinemann AW. Evaluating Individual Change With the Quality of Life in Neurological Disorders (Neuro-QoL) Short Forms. Arch Phys Med Rehabil. 2016;97(4):650-654.e8. PMID: 26740062

The above references and the Neuro-QoL scoring manual is a comprehensive guide to using the measure (and short form versions), including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 

Completion time: 12 – 18 minutes

Short form available: Yes – 8 item version

Online form available: Yes

Translations available: Yes (available here)

  • Patients are asked to rate their ability to participate in the social roles and activities in their lives using a Likert-5 point scale ranging from 5 (never) to 1 (always).
  • Can be completed using paper and pencil or using a computer adapted test-bank that allows for completion on a computer. Patients are required to check the box corresponding to the most accurate description of their response to each item.
  • Can be given with help from the clinician if the patient struggles to complete the form on their own.

PROMIS® Satisfaction with Participation in Social Roles and Activities (v2.0)

Purpose: To assess one’s perceived satisfaction with their performance of usual social roles and activities.

Recommended Use: For individuals who have had a recent change in health status that impacts their ability to be social. It can help an individual understand how they feel about their current abilities to socialize and how they could improve to be more satisfied.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

PROMIS – Satisfaction with Participation in Social Roles and Activities (v2.0) (link to measure, instructions and scoring guide)

Key Reference

  • Hahn EA, Beaumont JL, Pilkonis PA, et al. The PROMIS satisfaction with social participation measures demonstrated responsiveness in diverse clinical populations. J Clin Epidemiol. 2016;73:135-141. PMIID: 26931288

The PROMIS – Satisfaction with Participation in Social Roles and Activities (v2.0) user manual is a comprehensive guide to using the measure (and short form versions), including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 44

Completion time: 15 – 20 minutes

Short form available: Yes – 8 item (8a), 6 item (6a) and 4 item (4a) versions

  • Guidance: In selecting between short forms, the difference is instrument length. The reliability and precision of the short forms within a domain is highly similar. If you are working with a sample in which you want the most precise measure, select the longest short form. If you have little room for additional measures but really wanted to capture something as a secondary outcome, select one of the shorter instruments.

Online form available: Yes

Translations available: Yes (available here)

  • Patients rate their current satisfaction with their social roles and activities using a Likert-5 point scale ranging from 1 (not at all) to 5 (very much).
  • Can be completed using paper and pencil or using a computer adapted test-bank that allows for completion on a computer. Patients are required to check the box corresponding to the most accurate description of their response to each item.
  • Can be given with help from the clinician if the patient struggles to complete the form on their own.

Clinical Populations

  • Spinal cord injury: Heinemann AW, Kisala PA, Hahn EA & Tulsky DS. Development and psychometric characteristics of the SCI-QOL Ability to Participate and Satisfaction with Social Roles and Activities item banks and short forms. The Journal of Spinal Cord Medicine. 2015;38, 3: 397-408.
  • Outpatient rehabilitation: Tamminga SJ, van Vree FM, Volker G, Roorda LD, Terwee CB, Goossens PH & Vliet Vlieland TPM. Changes in the ability to participate in and satisfaction with social roles and activities in patients in outpatient rehabilitation. Journal of Patient-Reported Outcomes. 2020;4: 73.
  • Traumatic brain injury: Heinemann AW, Kisala PA, Boulton AJ, Sherer M, Sander AM, Chiaravalloti N. … Tulsky DS. Development and calibration of the TBI-QOL ability to participate in social roles and activities and TBI-QOL satisfaction with social roles and activities item banks and short forms. Archives of Physical Medicine and Rehabilitation. 2020;101: 20-32.

Neuro-QoL™ Satisfaction with Participation in Social Roles and Activities

Purpose: To assess one’s perceived satisfaction with their performance of usual social roles and activities.

Recommended Use:For individuals with neurological conditions.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

Neuro-QoL Satisfaction with Participation in Social Roles and Activities (v1.1) (link to measure, instructions and scoring guide)

Key Reference

  • Gershon RC, Lai JS, Bode R, et al. Neuro-QOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing. Qual Life Res. 2012;21(3):475-486. PMID: 21874314
  • Kozlowski AJ, Singh R, Victorson D, et al. Agreement Between Responses From Community-Dwelling Persons With Stroke and Their Proxies on the NIH Neurological Quality of Life (Neuro-QoL) Short Forms. Arch Phys Med Rehabil. 2015;96(11):1986-92.e14. PMID: 26209471
  • Kozlowski AJ, Cella D, Nitsch KP, Heinemann AW. Evaluating Individual Change With the Quality of Life in Neurological Disorders (Neuro-QoL) Short Forms. Arch Phys Med Rehabil. 2016;97(4):650-654.e8. PMID: 26740062

The above references and the Neuro-QoL scoring manual is a comprehensive guide to using the measure (and short form versions), including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 44

Completion time: 15 – 25 minutes

Short form available: Yes – 8 item version

Online form available: Yes

Translations available: Yes (available here)

  • Patients rate their current satisfaction with their social roles and activities using a Likert-5 point scale ranging from 1 (not at all) to 5 (very much).
  • Can be completed using paper and pencil or using a computer adapted test-bank that allows for completion on a computer. Patients are required to check the box corresponding to the most accurate description of their response to each item.
  • Can be given with help from the clinician if the patient struggles to complete the form on their own.

Reintegration to Normal Living Index (RNL)

Purpose: Assesses quantitatively the degree to which individuals who have experienced traumatic or incapacitating illness achieve reintegration into normal social activities.

Recommended Use: For individuals with a variety of conditions including heart disease, CNS disorder, arthritis, amputations, traumatic brain injuries, fractures, spinal cord injuries, and also with the elderly. * This assessment may not be appropriate for individuals with attentional deficits or visual impairments, as the visual analog scale might be difficult to read and comprehend. 

We recommend emailing the author for a copy of the assessment: Sharon.wood.dauphinee@mcgill.ca 

Key References

  • Wood-Dauphinee SL, Opzoomer MA, Williams JI, Marchand B, Spitzer WO. Assessment of global function: The Reintegration to Normal Living Index. Arch Phys Med Rehabil, 1988;69:583-590.
  • Wood-Dauphinee S, Williams JI. Reintegration to Normal Living as a proxy to quality of life. J Chronic Dis, 1987;40:491-502.
  • Finch E, Brooks D, Stratford PW, Mayo EN.  Reintegration to normal living (RNL) index. In: Physical rehabilitation outcome measures, 2002;(2), 201-203. Ontario: Lippincott, Williams & Wilkins.
  • Tooth L, McKenna K, Smith M, O’rourke P. Reliability of scores between stroke patients and significant others on the Reintegration to Normal Living (RNL) Index. Disability & Rehabilitation, 2003; 25(9), 433.
  • Bourget N, Deblock-Bellamy A, Blanchette AK, Batcho CS. Use and psychometric properties of the Reintegration to Normal Living Index in rehabilitation: A systematic review. Ann Phys Rehabil Med. 2018;61(4):262-269. PMID: 29317299

The above references detail the reliability, validity, standardization, and responsiveness of the assessment for patients with one more chronic conditions.

Number of Items: 11

Completion time: 5 – 12 minutes

Short form available: No

Online form available: Yes

Translations available: Yes

  • Patients rate their perceived integration into normal activities of daily living for each of the 11 declarative statements using a visual analog or Likert-10 point scale ranging from “does not describe my situation” (1 or minimal integration) and “fully describes my situation” (10 or complete integration).
  • Individual item scores are summed to provide the total score. The higher the score, the better the patients perceived integration.

Physical Function

Tools that help assess capability of one’s performance of physical activities including functioning of upper extremities, lower extremities, back, neck, and completion of activities of daily living.

This is an accordion element with a series of buttons that open and close related content panels.

PROMIS® (General) Physical Function (v2.0)

Purpose: Assesses self-reported capability of one’s performance of physical activities including functioning of upper extremities, lower extremities, back, neck, and completion of instrumental activities of daily living.

Recommended Use: For individuals with physical deficits or complaints, disorders such as MS, PD, stroke, and TBI.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

PROMIS – Physical Function (v2.0) (link to measure, instructions and scoring)

Key Reference

  • Schalet BD, Kaat A, Vrahas M, Buckenmaier III CT, Barnhill R & Gershon RC. Extending the ceiling of an item bank: development of above-average physical function items for PROMIS. In Quality of Life Research, 2016 Oct; (25)109.

The PROMIS – Physical Function user manual is a comprehensive guide to using the measure (and short form versions), including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 165

Completion time: 45 – 60 minutes

Short form available: Yes – 20 item (20a), 10 item (10a and 10b), 8 item (8b and 8c), 6 item (6a and 6b) and 4 item (4a) versions

  • Guidance: In selecting between short forms, the difference is instrument length. The reliability and precision of the short forms within a domain is highly similar. If you are working with a sample in which you want the most precise measure, select the longest short form. If you have little room for additional measures but really wanted to capture something as a secondary outcome, select one of the shorter instruments.

Online form available: Yes

Translations available: Yes (available here)

  • Includes domains of physical function pertaining to the patient’s upper extremities, lower extremities, back, neck, and instrumental activities of daily living; focuses on current physical functioning rather than asking the patient to report about the last 7 days.
  • Patients are asked to rate their physical functionality using a Likert-5 point scale ranging from 5 (without any difficulty) to 1 (unable to do) based on what they perceive is the most accurate response to each statement.
  • Can be completed using paper and pencil or using a computer adapted test-bank that allows for completion on a computer. Patients are required to check the box corresponding to the most accurate description of their response to each item.
  • Can be given with help from the clinician if the patient struggles to complete the form on their own.

Clinical Populations

  • Upper extremity illness: Overbeek CL, Nota SPFT, Jayakumar P, Hageman MG & Ring D. The PROMIS Physical Function correlates with the QuickDASH in patients with upper extremity illness. Clinical Orthopaedics and Related Research. 2015;473: 311-17.
  • Orthopedic patients: Hung M, Clegg DO, Greene T & Saltzman CL. Evaluation of the PROMIS Physical Function item bank in orthopaedic patients. Journal of Orthopaedic Research. 2010;29: 947-53.
  • Cancer: Jensen RE, Potosky AL, Reeve BB, Hahn E, Cella D, Smith AW. … Moinpour CM. Validation of the PROMIS Physical Function measures in a diverse U.S. population-based cohort of cancer patients. Quality of Life Research. 2015;24(10): 2333-44.

PROMIS® Physical Function - Mobility (v2.0)

Purpose: To characterize an individual’s ability to complete physical mobility tasks including getting out of bed and running.

Recommended Use: For individuals with physical deficits or complaints, disorders such as MS, PD, stroke, and TBI.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

PROMIS – Physical Function – Mobility (v2.0) (link to measure, instructions and scoring)

Key References

  • Hays RD, Spritzer KL, Amtmann D, Lai J-S, DeWitt EM, Rothrock N, et al. Upper Extremity and Mobility Subdomains from the Patient-Reported Outcomes Measurement Information System (PROMIS®) Adult Physical Functioning Item Bank. Archives of Physical Medicine and Rehabilitation, 2013;94(11), 2291-2296.
  • Schalet BD, Kaat A, Vrahas M, Buckenmaier III CT, Barnhill R & Gershon RC. Extending the ceiling of an item bank: development of above-average physical function items for PROMIS. In Quality of Life Research, 2016 Oct; (25)109.

The PROMIS – Physical Function Mobility user manual is a comprehensive guide to using the measure (and short form versions), including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 44

Completion time: 12 – 20 minutes

Online form available: Yes

Short form available: No

Translations available: Yes (available here)

Instructions:

  • Patients are asked to rate their physical functionality using a Likert-5 point scale ranging from 5 (without any difficulty) to 1 (unable to do) based on what they perceive is the most accurate response to each statement.
  • Can be completed using paper and pencil or using a computer adapted test-bank that allows for completion on a computer. Patients are required to check the box corresponding to the most accurate description of their response to each item.
  • Can be given with help from the clinician if the patient struggles to complete the form on their own.

Clinical Populations

  • Orthopedic trauma: Rothrock NE, Kaat AJ, Vrahas MS, O’Toole RV, Buono SK, Morrison S & Gershon RC. Validation of PROMIS Physical Function instruments in patients with orthopaedic trauma to a lower extremity. J Orthop Trauma. 2019 Aug;33: 377-83. PMID: 31085947
  • Diverse clinical sample: Schalet BD, Hay RD, Jensen SE, Beaumont JL, Fries JF & Cella D. Validity of PROMIS physical function measured in diverse clinical samples. J Clin Epidemiol. 2016 May;73: 112-8. PMID: 26970039
  • General population: Hays RD, Spritzer KL, Amtmann D, Lai J-S, DeWitt EM, Rothrock N … Krishnan E. Upper-extremity and mobility subdomains from the Patient-Reported Outcomes Measurement Information System (PROMIS) adult physical functioning item bank. Arch Phys Med Rehabil. 2013 Nov;94: 2291-6. PMID: 23751290

PROMIS® Physical Function – Upper Extremity

Purpose: To characterize an individual’s use of their upper extremities including the shoulders, arms, and hand activities.

Recommended Use: For individuals with physical deficits or complaints, disorders such as MS, PD, stroke, and TBI. Upper Extremity assessment also recommended for individuals with UE dysfunction, rotator cuff tears, shoulder displacement, etc.

SUMMARY OVERVIEW

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

Access the measure, instructions and scoring guide at HealthMeasures.net

*The HealthMeasures website includes full administration and scoring instructions and details regarding the reliability, validity, standardization, and responsiveness of the assessment for healthy adults, as well as the below clinical population.

Number of Items: 46

Completion time: 20-25 minutes

Online form available: Yes

Short form available: No

Translations available: Yes (available here)

Instructions:

  • Individuals to respond to statements and questions using Likert 5-point scales ranging from 5 (Without any difficulty) to 1 (Unable to do) or 5 (Not at all) to 1 (Cannot do) in order to characterize an individual’s ability to effectively use their upper extremities to complete basic activities of daily living.
  • Can be completed using paper and pencil or using a computer adapted test-bank that allows for completion on a computer. Patients are required to check the box corresponding to the most accurate description of their response to each item.
  • Can be given with help from the clinician if the patient struggles to complete the form on their own.

Clinical Populations

  • Upper extremity trauma: Kaat AJ, Rothrock NE, Vrahas MS, et al. Longitudinal Validation of the PROMIS Physical Function Item Bank in Upper Extremity Trauma. J Orthop Trauma. 2017 Oct;31(10):e321-e326. PMID: 28938284
  • Carpal tunnel release: Bernstein DN, Houck JR, Mahmood B, Hammert WC. Minimal Clinically Important Differences for PROMIS Physical Function, Upper Extremity, and Pain Interference in Carpal Tunnel Release Using Region- and Condition-Specific PROM Tools. J Hand Surg Am. 2019;44(8):635-640.PMID: 31126813

QuickDASH

Purpose: To help characterize an individual’s level of impairment in their affected upper extremity (shoulder) based on their self-reported ability to complete daily tasks, their pain levels, and their sleep habits.

Recommended Use: To establish a baseline of upper extremity functioning in individuals who have recently had a change in health status related to physical function (stroke, TBI, MS, PD, injury).

Access the measure, instructions and scoring form here

Number of Items: 11 on the main item bank (2 optional item banks may be completed if relevant)

  • Work item bank: 4 items
  • Sport/performing arts item bank: 4 items

Completion time: 10-15 minutes

Online form available: Yes

Short form available: The QuickDASH is the shortened version of the DASH (30 items)

Translations available: Yes

  • Individuals answer a series of questions about their current ability to perform tasks, how they experience pain, and their sleep habits using Likert scales ranging from 1 (no difficulty) to 5 (inability to do something or extreme pain).
  • Can be completed using paper and pencil or using a computer adapted test-bank that allows for completion on a computer. Patients are required to check the box corresponding to the most accurate description of their response to each item.
  • Can be given with help from the clinician/researcher if the patient struggles to complete the form on their own.

Clinical Populations

  • Shoulder pain: Mintken PE, Glynn P, Cleland JA. Psychometric properties of the shortened disabilities of the Arm, Shoulder, and Hand Questionnaire (QuickDASH) and Numeric Pain Rating Scale in patients with shoulder pain. J Shoulder Elbow Surg. 2009 Nov;18(6):920-926. PMID: 19297202
  • Upper extremity dysfunction and psychological distress: Niekel MC, Lindenhovius AL, Watson JB, Vranceanu AM, Ring D. Correlation of DASH and QuickDASH with measures of psychological distress. J Hand Surg Am. 2009;34(8):1499-1505. PMID: 19703733
  • Upper extremity disorders (post-op): Gummesson C, Ward MM, Atroshi I. The shortened disabilities of the arm, shoulder and hand questionnaire (QuickDASH): validity and reliability based on responses within the full-length DASH. BMC Musculoskelet Disord. 2006 May;7:44. PMID: 16709254

Activities of Daily Living (ADLs) / Instrumental Activities of Daily Living (IDALs)

Tools that help assess one’s ability to perform activities that relate to personal care for oneself and their home environment.

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Neuro-QoL™ Upper Extremity Function (Fine Motor, ADL)

Purpose: To characterize an individual’s difficulties in with fine motor skills and abilities using upper extremities to perform everyday tasks.

Recommended Use: For individuals with neurological conditions.

Source: PROMIS® (Patient-Reported Outcomes Measurement System)

Neuro-QoL™ Upper Extremity Function (link to measure, instructions and scoring)

Key Reference

  • Cella D, Lai JS, Nowinski CJ, et al. Neuro-QOL: brief measures of health-related quality of life for clinical research in neurology. Neurology. 2012;78(23):1860-1867. PMID: 22573626

The above reference and PROMIS – Upper Extremity Function user manual is a comprehensive guide to using the measure (and short form versions), including information on its development and testing with regard to reliability, validity, standardization, and responsiveness. Learn more about the evidence and utility of PROMIS health measures here.

Number of Items: 15

Completion time:  5 – 8 minutes

Online form available: Yes

Short form available: Yes – 8 item (8a) version

Translations available: Yes (available here)

  • Individuals respond to questions using a Likert 5-point scale ranging from 1 (Unable to do) to 5 (Without an difficulty).
  • Can be completed using paper and pencil or using a computer adapted test-bank that allows for completion on a computer. Patients are required to check the box corresponding to the most accurate description of their response to each item.
  • Assessment can be given with help from the clinician if the patient struggles to complete the form on their own.

Clinical Populations

Barthel Index

Purpose: To determine the degree of functional independence from any help, physical or verbal, (however minor and for whatever reason) using their activities of daily living.

Recommended Use: As a record of what ADLs a patient does for themselves, not as a record of what a patient could do. It is not meant to be used as a stand-alone assessment to predict functional outcomes but rather to be part of a complement of assessments to create a full picture of a patient’s ability and rehabilitation potential.

Barthel Index (link to the measure, instructions and scoring)

Key References 

  • Mahoney FI & Barthel D. Functional evaluation: the Barthel Index. Maryland State Medical Journal, 1965;14:56-61.
  • Collin C, Wade DT, Davies S, Horne V. The Barthel ADL Index: a reliability study. Int Disability Study, 1988;10:61-63.

The above references detail the reliability, validation, standardization and responsiveness of the assessment for adult patients with a neuro- or musculoskeletal disorder.

Number of Items: 10

Completion time: 5 – 10 minutes

  • Patient’s report and/or perform tasks listed to determine an individual’s level of independence with ADLs.
  • In addition to patient self-report, asking friends, relatives and/or nurses are all acceptable sources when completing. Direct observation should be utilized when possible (at a patient’s home or other safe environment), although, direct testing is not required.
  • Scoring: The need for supervision renders the patient not independent.

Clinical Population

       Stroke:

    • Gresham GE, Phillips TF, Labi ML. ADL status in stroke: relative merits of three standard indexes. Arch Phys Med Rehabil. 1980;61:355-358.
    • Loewen SC, Anderson BA. Predictors of stroke outcome using objective measurement scales. Stroke, 1990;21:78-81.
  • Parkinson’s: Taghizadeh G, Martinez-Martin P, Meimandi M, Habibi SA, Jamali S, Dehmiyani A, Rostami S, et al. Barthel index and modified rankin scale: psychometric properties during medication phases in idiopathic Parkinson disease. Annals of Physical and Rehabilitation Medicine. 2020;63(6):500-4.

Katz ADL Index

Purpose: To determine functional status and the level of independence of an individual with ADL tasks including bathing, dressing, toileting, feeding, transferring, and continence.

Recommended Use: For individuals with a recent change in health status, should be used to establish a baseline or determine how much a disease/diagnosis impacts an individual’s daily functioning.

Katz ADL Index (link to measure, instructions, and scoring)

Key Reference 

  • Katz S, Downs TD, Cash HR & Grotz RC. Progress in development of the index of ADL. The Gerontologist. 1970;10(1): 20-30. PMID: 5420677
  • Wallace M, Shelkey M; Hartford Institute for Geriatric Nursing. Katz Index of Independence in Activities of Daily Living (ADL). Urol Nurs. 2007;27(1):93-94. PMID: 17390935

The above references detail the reliability, validation, standardization and responsiveness of the assessment for older patients in various care settings.

Number of Items: 6

Completion time: 5 – 12 minutes

Online form available: Yes

  • Individuals report or perform the six functional tasks, either receiving a score of (1) “NO supervision, direction or personal assistance needed” or (0) ‘WITH supervision, direction or personal assistance needed”
  • Scores of 6 indicate full functionality, 4 indicates moderate impairment, and 2 indicates severe functional impairment.

Clinical Populations

  • Stroke: Hamrin E & Lindmark B. Evaluation of functional capacity after stroke as a basis for active intervention: A comparison between an activity index and the Katz Index of ADL. Scandinavian Journal of Caring Science. 1988; 2, 3: 113-22.
  • Skilled Nursing Facility Residents: Gerrard P. The hierarchy of the activities of daily living in the Katz Index in residents of skilled nursing facilities. Journal of Geriatric Physical Therapy. 2013; 36, 2: 87-91. PMID: 22894986

Lawton-Brody Instrumental Activities of Daily Living Scale

Purpose: To determine an individual’s functional status based on their ability to complete IADL activities including cooking, household tasks, personal cares, and out of the house shopping.

Recommended Use: For individuals with a recent change in health status, can be used to establish baseline functioning or better understand the impact of a disease/diagnosis on an individual’s daily life.

Lawton IADL (link to measure, instructions and scoring)

Key References 

  • Lawton MP & Brody EM. Assessment of older people: Self-maintaining and instrumental activities of daily living. The Gerontologist, 1969;9(3), 179-186. PMID: 5349366
  • Graf C; Hartford Institute for Geriatric Nursing. The Lawton instrumental activities of daily living (IADL) scale. Medsurg Nurs. 2008;17(5):343-344. PMID: 19051984

The above references detail the reliability, validation, standardization and responsiveness of the assessment for older adults in acute care or community settings.

Number of Items: 8

Completion time: 5 – 12 minutes

Online form available: Yes

Short form available: No

Translations available: Yes – Chinese

  • Individuals report on their ability to perform a series of IADL tasks to the best of their ability.
  • The clinician/researcher records (or observes) how the individual performs each task and scores them based on which statements best fit the performance on the testing form.
  • Scores are based on overall performance of each task and higher scores indicate higher functionality. Lower scores indicate potential deficits in functionality that should be further evaluated in a clinical setting.

Clinical Populations

  • Parkinson’s Disease: Shulman LM, Armstrong M, Ellis T et al. Disability rating scales in Parkinson’s Disease: Critique and recommendations. Movement Disorders. 2016;31, 10: 1455-65.

Social Determinates of Health

Tools that help asses health disparities as they relate to one’s access to resources and social supports that impact their health. The Social Determinates of Health (SDoH) are the non-medical factors that influence health outcomes. They are the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life. These forces and systems include economic policies and systems, development agendas, social norms, social policies, racism, climate change, and political systems. There are five SDOH:

  • Economic Stability (Income, Job Opportunities, Transportation, Safe Housing)
  • Education Access and Quality (Education, Literacy Skills, Language)
  • Health Care Access and Quality
  • Neighborhood and Built Environment (Safety, Parks, Community Activities, Food Desserts, Air and Water Pollution)
  • Social and Community Context (Poverty, Racism, Discrimination, Violence)

About the PhenX Social Determinants of Health Collections

PhenX Measures for Social Determinants of Health Collections

In 2018, the National Institute on Minority Health and Health Disparities (NIMHD) launched the PhenX Measures for Social Determinants of Health (SDoH) Project with the goal of making it easier for investigators to compare results and to combine data from different studies. As a result of this project, 19 protocols relevant to SDoH were selected by the first PhenX SDoH Working Group. In 2022, NIMHD launched an expansion project to add an additional 15 new protocols to the two SDoH Specialty collections.

Core Collection (link to toolkit)

The Core collection includes 16 measurement protocols that are deemed relevant for all research projects for collection of comparable data on social determinants of health across studies. These protocols are designed to create common data elements for cross-study analyses that compare or combine data from different studies. The Core collection includes protocols identified by the first SDoH Working Group in 2020 and protocols that were already in the PhenX Toolkit. The Core collection includes Ethnicity and Race, Age, Gender Identity, and Annual Family Income, as well as English Proficiency, Occupational Prestige and Access to Health Services.

To assist researchers in studying SDoH, the National Institute on Minority Health and Health Disparities (NIMHD) and NIH partners encourages the use of the 16 measurement protocols in the PhenX SDoH Core Collection for all primary data collection (https://grants.nih.gov/grants/guide/notice-files/NOT-MD-21-003.html). The goal of the SDoH Core Collection is to make it easier for investigators to compare results and to combine data from different studies to improve human health. The SDoH Core Collection is also in the COVID-19 Collection.

Specialty Collections: Individual and Structural (link to toolkits)

The SDoH measurement protocols have been organized into two Specialty collections, Individual and Structural, that reflect the levels of influence in the NIHMD Research Framework. The Individual SDoH Specialty collection includes protocols where participants are reporting their experience in areas such as the physical/built environment, sociocultural environment, and healthcare. The Structural SDoH Specialty collection includes protocols to describe and estimate factors linked to a specific geographic area such as a state, county, or a census-defined unit, such as census tract or ZIP Code. It includes both societal and community levels of influence. These two Specialty collections are complementary to the Core collection and will allow more nuanced investigations of how SDoH influences health.

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Employment Status, Benefits and Job Quality

SDoH: Economic Stability (Income, Job Opportunities, Transportation, Safe Housing)

Purpose: To assess whether individuals are working for pay or receiving non-wage compensation, such as employer-sponsored health insurance and pension plans; as well as other dimensions of job quality, such as overtime schedules and paid time off.

Source: U.S. Census Bureau

Employment Status, Benefits and Job Quality (link to measure, administration and scoring)

Number of Items: 12

Completion time: 1 – 3 minutes

Online form available: No

Short form available: No

Translations available: No

  • Questions are divided into three sections: Employment Status, Job Features, and Non-Wage Benefits.
  • Questions are administered verbally by an interviewer.
  • Questions have different answer formats and can be used individually.

References

   Section 1: Employment Status, items adapted from:

   Section 2: Job Features (Regular Hours/Shifts), items adapted from:

  Section 3: Non-wage Benefits:

AHRQ’s Patient Experience Surveys and Guidance (CAHPS)

SDoH: Health Care Access & Quality

Purpose: To understand patient’s satisfaction with a range of healthcare services.

Recommended Use: Identify what specific aspect(s) of healthcare services you would like to assess of your patients’/participants’ care, then select the measure(s) from the suite of tools that can rate patients satisfaction.

Source: Agency for Healthcare Research and Quality (AHRQ), Centers for Medicare and Medicaid Services (CMS)

Number of measures: 15

Access all 15 measures, including instructions and scoring for each, at AHRQ.

AHRQ organizes healthcare services into (4) general areas. There are one or more surveys for each of the four areas.

  1. Patient Experience with Providers (5)
  2. Patient Experience with Condition-Specific Care (2)
  3. Patient Experience with Facility-Based Care (5)
  4. Enrollee Experience with Health Plans and Related Programs (3)