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PROMIS Ability to Participate Item Bank and Short Forms
Availability
Please visit this website for more information about the instrument: PROMIS Ability to Participate Item Bank
PROMIS Item Bank v2.0 - Ability to Participate in Social Roles and Activities
PROMIS Short Form v2.0 - Ability to Participate in Social Roles and Activities 4a
PROMIS Short Form v2.0 - Ability to Participate in Social Roles and Activities 6a
PROMIS Short Form v2.0 - Ability to Participate in Social Roles and Activities 8a
 
Find all measures by selecting 'Ability to Participate' as the domain criteria or a specific item bank or short form by entering the name in the Measure Name search field.
Classification
Disorder-specific classifications were assigned with respect to the overall collection of PROMIS measures. Use of individual item banks or short forms depends upon the study design or type of research involved unless additional guidance is noted.
The item bank is included in the General CDE recommendations and the item bank and short forms are recommended for NeuroRehab.
 
NeuroRehab Supplemental - Highly Recommended:
Recommendations for Use: Indicated for studies requiring a measure of participation. Intended for use in community settings since participation takes place in the community.
 
Supplemental - Highly Recommended: Stroke, Congenital Muscular Dystrophy (CMD) in studies of psychosocial functioning, quality-of-life, outcome, and long-term adjustment studies.
 
Supplemental: Traumatic Brain Injury (TBI), Amyotrophic Lateral Sclerosis (ALS), Chiari I Malformation (CM), Epilepsy, Friedreich's Ataxia (FA), Headache, Huntington's Disease (HD), Mitochondrial Disease (Mito), Multiple Sclerosis (MS), Myasthenia Gravis (MG), Neuromuscular Diseases (NMD), Duchenne/Becker Muscular Dystrophy (DMD/BMD), Spinal Muscular Atrophy (SMA), Parkinson's Disease (PD), Stroke, and Spinal Cord Injury (SCI), and Unruptured Cerebral Aneurysms and Subarachnoid Hemorrhage (SAH)
 
Exploratory: Cerebral Palsy (CP), Myotonic Muscular Dystrophy (DM), Facioscapulohumeral Muscular Dystrophy (FSHD), and Sport-Related Concussion (SRC)
 
*Headache specific subtest recommendations: Anxiety (Adult/Pediatric), Depression (Adult/Pediatric), Sleep (Adult)
Short Description of Instrument
The Patient Reported Outcomes Measurement Information System (PROMIS) Ability to Participate in Social Roles and Activities Adult Item Bank and Short Forms (4a, 6a, 8a) assess the perceived ability to perform one's usual social roles and activities. Items are worded negatively in terms of perceived limitations, but responses are reverse-coded so that higher scores represent fewer limitations (better abilities). The item bank does not use a time frame (e.g., over the past seven days) when assessing ability to participate in social roles and activities. See List of Adult Measures for details.
 
PROMIS contains calibrated item banks with Likert style items for approximately 70 domains (e.g., anger, anxiety, depression, fatigue (Cella et al., 2010; Garcia et al., 2007), pain (Amtmann et al., 2010), physical function, satisfaction with social activities and roles, sleep/wake disturbance, and global health). It is part of the NIH goal to develop systems to support NIH-funded research supported by all its institutes and centers. PROMIS measures cover physical, mental, and social health and can be used across chronic conditions.
 
The instrument is domain-focused (domains listed above) rather than specific to a particular disease; however, a disease-customized measurement approach can be utilized by choosing the PROMIS measures most relevant to the specific disease. For example, there would be extra time up front (compared to a standardized single measure) to select and agree upon appropriate CMD-specific items but would be worthwhile in the long term if other researchers studying CMD agree to use the CMD specific items identified.
 
See: PROMIS Domain Framework for pediatric and adult domains
 
Administration: There are two administration options for assessing Ability to Participate in Social Roles and Activities: short forms (4a, 6a, 8a) and computerized adaptive test (CAT). With CAT, participant responses guide the system's choice of subsequent items from the full item bank (35 items in total). Although items differ across respondents taking CAT, scores are comparable across participants and over time. PROMIS measures can be administered in three ways: on paper (short forms and profiles only); by computer; with an app.
 
Time: For CAT version, variable but design based on item-response theory algorithms to minimize time. For short forms, the administration time is 1-3 minutes.
 
Ages: Adult ages 18+.
 
Cost: No licensing or royalty fees for English and Spanish PROMIS measures used in individual research, clinical practice, educational assessment, or other application. Translations in other languages are subject to a distribution fee. Permission is required for commercial use or integration into proprietary technology; see PROMIS Terms and Conditions of Use for details.
 
Available in Spanish and specific domains are available in multiple other languages; see PROMIS Translations for details.
Comments/Special Instructions
NeuroRehab Specific: The PROMIS Ability to Participate in Social Roles and Activities item bank and short forms (4a, 6a, 8a) are self-reported measures of participation.
Scoring and Psychometric Properties
Scoring: T scores for all scales.
 
In all cases, a high score means more of domain. For example, higher scores on the fatigue measures indicate poorer health whereas higher scores on physical functioning measure indicate better health.
 
Standardization Population: For most domains, T-scores relate to the US General Population. See PROMIS Calibrations Testing for further details regarding sample for specific ages and domains.
 
Scoring Manuals are available at: PROMIS Scoring Manuals
 
Psychometric Properties: Substantial qualitative and quantitative evidence has been gathered that supports the validity of PROMIS measures. More information about validation is available at: PROMIS Validation
Rationale/Justification
Strengths: PROMIS Ability to Participate in Social Roles and Activities Short Forms (4a, 6a, 8a) are brief, yet reliable.
 
Weaknesses: Coverage of all aspects of participation is not comprehensive. Use of the item bank requires CAT software.
References
Key References:
Cella D, Riley W, Stone A, Rothrock N, Reeve B, Yount S, Amtmann D, Bode R, Buysse D, Choi S, Cook K, Devellis R, DeWalt D, Fries JF, Gershon R, Hahn EA, Lai JS, Pilkonis P, Revicki D, Rose M, Weinfurt K, Hays R; PROMIS Cooperative Group. 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 Nov;63(11):1179-94.
 
See a list of primary citations for PROMIS measures here: Primary Citations for PROMIS Measures
 
Item Bank and Short Form-Specific Primary Reference:
Hahn EA, DeWalt DA, Bode RK, Garcia SF, DeVellis RF, Correia H, Cella D, PROMIS Cooperative Group. New English and Spanish social health measures will facilitate evaluating health determinants. Health Psychol. 2014 May;33(5):490-499.
 
Additional References:
Amtmann D, Cook KF, Jensen MP, Chen WH, Choi S, Revicki D, Cella D, Rothrock N, Keefe F, Callahan L, Lai JS. Development of a PROMIS item bank to measure pain interference. Pain. 2010 Jul;150(1):173-182.
 
Bruni O, Ottaviano S, Guidetti V, Romoli M, Innocenzi M, Cortesi F, Giannotti F. The Sleep Disturbance Scale for Children (SDSC). Construction and validation of an instrument to evaluate sleep disturbances in childhood and adolescence. J Sleep Res. 1996 Dec;5(4):251-61.
 
Bruni O, Romoli M., Innocenzi M, Giannotti F, Cortesi F and Ottaviano S. Prevalenza dei disturbi del sonno in eth scolare. In: Di Perri R., Raffaele M., Silvestri R. and Smirne S. (Eds) 11 Sonno in ltaliu 1994. Poletto Ed., Milano, 1994 163-171.
 
Cella D, Yount S, Rothrock N, Gershon R, Cook K, Reeve B, Ader D, Fries JF, Bruce B, Rose M; PROMIS Cooperative Group. The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years. Med Care. 2007 May;45(5 Suppl 1):S3-S11.
 
Garcia SF, Cella D, Clauser SB, Flynn KE, Lad T, Lai JS, Reeve BB, Smith AW, Stone AA, Weinfurt K. Standardizing patient-reported outcomes assessment in cancer clinical trials: a patient-reported outcomes measurement information system initiative. J Clin Oncol. 2007 Nov 10;25(32):5106-12. Erratum in: J Clin Oncol. 2008 Feb 20;26(6):1018. Lad, Thomas [added].
 
Katzan IL, Thompson N, Uchino K. Innovations in Stroke: The Use of PROMIS and NeuroQoL Scales in Clinical Stroke Trials. Stroke. 2016 Feb;47(2):e27-30.
 
Kobau R, Cui W, Zack MM. Adults with an epilepsy history fare significantly worse on positive mental and physical health than adults with other common chronic conditions-Estimates from the 2010 National Health Interview Survey and Patient Reported Outcome Measurement System (PROMIS) Global Health Scale. Epilepsy Behav. 2017 Jul;72:182-184.
 
Spruyt K, Gozal D. Pediatric sleep questionnaires as diagnostic or epidemiological tools: a review of currently available instruments. Sleep Med Rev. 2011 Feb;15(1):19-32.
 
NeuroRehab-Specific References:
Hahn EA, Kallen MA, Jensen RE, Potosky AL, Moinpour CM, Ramirez M, Cella D, Teresi JA. 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 Jun 27;58(2):403-421.
 
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. J Patient Rep Outcomes. 2020 4(1):73.
 
van Leeuwen LM, Tamminga SJ, Ravinskaya M, de Wind A, Hahn EA, Terwee CB, Beckerman H, Boezeman EJ, Hoving JL, Huysmans MA, Nieuwenhuijsen K, de Boer AGEM, van der Beek AJ. 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 Oct;29(10):2851-2861.
 
Document last updated May 2024