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Patient-Reported Outcomes Measurement Information System (PROMIS)
Patient-Reported Outcomes Measurement Information System (PROMIS)
NeuroRehab Supplemental - Highly Recommended:
Recommendations for Use: Indicated for studies requiring a measure of other clinical data. Recommended for Stroke and Congenital Muscular Dystrophy (CMD) studies.
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) and 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) 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 (Bruni et al., 1996, 1994; Spruyt & Gozal 2011), and global health). It is part of the NIH goal to develop systems to support NIH-funded research supported by all of 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. 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: Computer adaptive test (CAT) or short-forms
Time: Variable but design based on item-response theory algorithms to minimize time. The basic PROMIS instrument is available in multiple versions (10-, 29-, and 57-item versions).
Ages: Pediatric self-report instruments are available for children ages 8-17 and parent proxy reports are available for children ages 5-17. Full range of self-report adult instruments.
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.
Advantages: Brief, yet reliable.
|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 for PROMIS measures 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
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;150(1):173-182.
Bruni O, Ottaviano S, Guidetti V, Romoli M, Innocenzi M, Cortesi 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;5(4):251-261.
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 BRM. The patient reported outcomes measurement information system (PROMIS): progress of an NIH roadmap cooperative group during its first two years. Med Care. 2007;45:S3-S11.
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;63(11):1179-1194.
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;25(32):5106-5112.
Katzan IL, Thompson N, Uchino K. The Use of PROMIS and NeuroQOL Scales in Clinical Stroke Trials. Stroke. 2016;47(2):e27-e30.
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;15(1):19-32.
Document last updated January 2022