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Patient-Reported outcomes Measurement Information System (PROMIS) Upper Extremity Domain
Availability
The instrument is freely available here: PROMIS Website
For more information on pediatric and adult domains please visit http://www.nihpromis.org/measures/domainframework1#ph
 
Classification
Supplemental: Sport-Related Concussion (SRC) and Traumatic Brain Injury (TBI)
Short Description of Instrument
The Patient Reported Outcomes Measurement Information System (PROMIS) Version 1.0 contains 12 calibrated item banks with likert style items (e.g., anger, anxiety, depression, fatigue, pain, 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 of its institutes and centers. PROMIS measures cover physical, mental, and social health and can be used across chronic conditions.
 
The mobility and upper extremity subdomains are under the Physical Health Domain.
 
Administration: Computer adaptive test or short-forms
 
Time: Variable but design based on item-response theory algorithms to minimize time. Also, 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: Free access to investigators who register and describe their study on the Assessment Center website. Currently, free use with a cooperative agreement. The goal is to grant free access in the public domain to the scientific community including the data repository, CAT, and supporting documents. This is in process.
Available in Spanish and specific domains are available in multiple other languages; see PROMIS Translations for details.
 
Advantages: Brief, yet reliable.
 
Sport-Related Concussion Specific:
Advantages: PROMIS is freely available (free access to investigators who describe their study on the website); free to use with cooperative agreement; goal is to grant free access in the public domain to the scientific community (in process). Brief and reliable. Spanish language versions are available. Specific domains are available in other languages. Pediatric self-report version for 8–17 years and parent proxy report for children 5–17; as well as full range for adult instruments. Acute timeframe (time of injury until 72 hours) included--specific to sport concussion.
PROMIS is brief, yet reliable. Subdomains are available in multiple languages and it is free to use with a cooperative agreement. The NIH PROMIS network derived a consensus-based framework for self-reported health, systematically reviewed available instruments and datasets that address the initial PROMIS domains (Cella et al., 2007). Could be useful not only in research but also in clinical practice and health policy applications such as population health measurement or contribution to healthcare reimbursement (Cella et al., 2007). Patterns of correlations with other health outcomes supported the construct validity of the item bank (Amtmann et al., 2010). The item bank can be used to develop short forms for particular purposes or samples, or the items can be administered using CAT (Amtmann et al., 2010).  
 
Limitations: Received only limited input from colleagues outside the PROMIS network and its advisors before widespread testing of constituent item banks, what could have lead to items in the banks being tested that could have benefited from further discussion and refining (Cella et al., 2007). Responses to self-reported items measuring complex constructs are never strictly unidimensional and validation is an ongoing process, and no single study can provide all the information needed to fully understand the strengths and weaknesses of a measure (Amtmann et al., 2010). ALso, associating PROMIS-PI scores and score changes with clinical markers or “actionable” events, such as change in medication or referral to specialists might add value to the test outcomes (Amtmann et al., 2010).
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.
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;150(1):173–182.
 
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;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;25(32):5106–5112. Review. Erratum in: J Clin Oncol. 2008;26(6):1018. Lad, Thomas [added].
 
Hays RD, Spritzer KL, Amtmann D, Lai JS, Dewitt EM, Rothrock N, Dewalt DA, Riley WT, Fries JF, 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;94(11):2291–2296.
 
Howland M, Tatsuoka C, Smyth KA, Sajatovic M. Evaluating PROMIS(®) applied cognition items in a sample of older adults at risk for cognitive decline. Psychiatry Res. 2017;247:39–42.
 
Toomey M, Schwartz J, Laverdiere M, Tucker CA, Bevans K, Forrest CB, Blum NJ. Preliminary Validation of the PROMIS Parent-Proxy Peer Relationships Measure in Children with Autism Spectrum Disorder: A DBPNet Study. J Dev Behav Pediatr. 2016;37(9):724–729.
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