Advertisement

Why Disability and Rehabilitation Specialists Should Lead the Way in Patient-Reported Outcomes

Published:April 11, 2014DOI:https://doi.org/10.1016/j.apmr.2014.03.022
      An audio podcast accompanies this article.
      Patient-reported outcomes (PROs), or any report directly from patients about their health status, including functional status and feelings, are becoming increasingly recognized as important for many reasons. Not only do PROs represent the patients' view of their health status, but they are more reflective of real life than many objective performance measures historically used in clinical research.
      • Amtmann D.
      • Cook K.F.
      • Johnson K.L.
      • Cella D.
      The PROMIS initiative: involvement of rehabilitation stakeholders in development and examples of applications in rehabilitation research.
      PROs are also more predictive of distal outcomes such as mortality in cancer, as well as function and quality of life (QOL) in people with low back pain, than are “objective” measures of disease status (such as imaging findings).
      • Jarvik J.J.
      • Hollingworth W.
      • Heagerty P.
      • Haynor D.R.
      • Deyo R.A.
      The Longitudinal Assessment of Imaging and Disability of the Back (LAIDBack) Study: baseline data.
      • Chou R.
      • Fu R.
      • Carrino J.A.
      • Deyo R.A.
      Imaging strategies for low-back pain: systematic review and meta-analysis.

      List of abbreviations:

      CER (comparative effectiveness research), EHR (electronic health record), NIH (National Institutes of Health), PRO (patient-reported outcome), PROMIS (Patient-Reported Outcomes Measurement Information System), QOL (quality of life)
      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Archives of Physical Medicine and Rehabilitation
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Amtmann D.
        • Cook K.F.
        • Johnson K.L.
        • Cella D.
        The PROMIS initiative: involvement of rehabilitation stakeholders in development and examples of applications in rehabilitation research.
        Arch Phys Med Rehabil. 2011; 92: S12-S19
        • Jarvik J.J.
        • Hollingworth W.
        • Heagerty P.
        • Haynor D.R.
        • Deyo R.A.
        The Longitudinal Assessment of Imaging and Disability of the Back (LAIDBack) Study: baseline data.
        Spine. 2001; 26: 1158-1166
        • Chou R.
        • Fu R.
        • Carrino J.A.
        • Deyo R.A.
        Imaging strategies for low-back pain: systematic review and meta-analysis.
        Lancet. 2009; 373: 463-472
        • Sandel M.E.
        • Jette A.M.
        • Appelman J.
        • et al.
        Designing and implementing a system for tracking functional status after stroke: a feasibility study.
        PM R. 2013; 5 (quiz 490): 481-490
        • Lai J.S.
        • Cella D.
        • Choi S.
        • et al.
        How item banks and their application can influence measurement practice in rehabilitation medicine: a PROMIS fatigue item bank example.
        Arch Phys Med Rehabil. 2011; 92: S20-S27
        • Ware Jr., J.E.
        • Phillips J.
        • Yody B.B.
        • Adamczyk J.
        Assessment tools: functional health status and patient satisfaction.
        Am J Med Qual. 1996; 11: S50-S53
        • Granger C.V.
        • Brownscheidle C.M.
        Outcome measurement in medical rehabilitation.
        Int J Technol Assess Health Care. 1995; 11: 262-268
        • Granger C.V.
        • Greer D.S.
        Functional status measurement and medical rehabilitation outcomes.
        Arch Phys Med Rehabil. 1976; 57: 103-109
        • Wu A.W.
        • Kharrazi H.
        • Boulware L.E.
        • Snyder C.F.
        Measure once, cut twice—adding patient-reported outcome measures to the electronic health record for comparative effectiveness research.
        J Clin Epidemiol. 2013; 66: S12-S20
        • Turner-Stokes L.
        • Williams H.
        • Johnson J.
        Goal attainment scaling: does it provide added value as a person-centred measure for evaluation of outcome in neurorehabilitation following acquired brain injury?.
        J Rehabil Med. 2009; 41: 528-535
        • Khan F.
        • Pallant J.F.
        • Turner-Stokes L.
        Use of goal attainment scaling in inpatient rehabilitation for persons with multiple sclerosis.
        Arch Phys Med Rehabil. 2008; 89: 652-659
        • Stolee P.
        • Stadnyk K.
        • Myers A.M.
        • Rockwood K.
        An individualized approach to outcome measurement in geriatric rehabilitation.
        J Gerontol A Biol Sci Med Sci. 1999; 54: M641-M647
        • Crits-Christoph P.
        • Ring-Kurtz S.
        • Hamilton J.L.
        • et al.
        A preliminary study of the effects of individual patient-level feedback in outpatient substance abuse treatment programs.
        J Subst Abuse Treat. 2012; 42: 301-309
        • Berry D.L.
        • Hong F.
        • Halpenny B.
        • et al.
        Electronic self-report assessment for cancer and self-care support: results of a multicenter randomized trial.
        J Clin Oncol. 2014; 32: 199-205
        • Iglehart J.K.
        Prioritizing comparative-effectiveness research—IOM recommendations.
        N Engl J Med. 2009; 361: 325-328
        • Gray B.H.
        With the inclusion of $1.1 billion for comparative effectiveness research in the 2009 fiscal stimulus bill in the United States, the experience of other countries with such research is of substantial interest in this country.
        Milbank Q. 2009; 87: 335-338
        • Sox H.C.
        • Greenfield S.
        Comparative effectiveness research: a report from the Institute of Medicine.
        Ann Intern Med. 2009; 151: 203-205
        • Wu A.W.
        • Snyder C.
        • Clancy C.M.
        • Steinwachs D.M.
        Adding the patient perspective to comparative effectiveness research.
        Health Aff (Millwood). 2010; 29: 1863-1871
        • Ahmed S.
        • Berzon R.A.
        • Revicki D.A.
        • et al.
        The use of patient-reported outcomes (PRO) within comparative effectiveness research: implications for clinical practice and health care policy.
        Med Care. 2012; 50: 1060-1070
      1. Olsen L, Aisner D, McGinnis JM, editors. The Learning Healthcare System: Workshop Summary (IOM Roundtable on Evidence-Based Medicine). Washington (DC): The National Academies Press; 2007.

        • Greene S.M.
        • Reid R.J.
        • Larson E.B.
        Implementing the learning health system: from concept to action.
        Ann Intern Med. 2012; 157: 207-210
        • Jarvik J.G.
        • Comstock B.A.
        • Bresnahan B.W.
        • et al.
        Study protocol: the Back Pain Outcomes using Longitudinal Data (BOLD) registry.
        BMC Musculoskelet Disord. 2012; 13: 64