Implementing patient-reported outcomes assessment in clinical practice: a review of the options and considerations
- 4.2k Downloads
While clinical care is frequently directed at making patients “feel better,” patients’ reports on their functioning and well-being (patient-reported outcomes [PROs]) are rarely collected in routine clinical practice. The International Society for Quality of Life Research (ISOQOL) has developed a User’s Guide for Implementing Patient-Reported Outcomes Assessment in Clinical Practice. This paper summarizes the key issues from the User’s Guide.
Using the literature, an ISOQOL team outlined considerations for using PROs in clinical practice; options for designing the intervention; and strengths, weaknesses, and resource requirements associated with each option.
Implementing routine PRO assessment involves a number of methodological and practical decisions, including (1) identifying the goals for collecting PROs in clinical practice, (2) selecting the patients, setting, and timing of assessments, (3) determining which questionnaire(s) to use, (4) choosing a mode for administering and scoring the questionnaire, (5) designing processes for reporting results, (6) identifying aids to facilitate score interpretation, (7) developing strategies for responding to issues identified by the questionnaires, and (8) evaluating the impact of the PRO intervention on the practice.
Integrating PROs in clinical practice has the potential to enhance patient-centered care. The online version of the User’s Guide will be updated periodically.
KeywordsPatient-reported outcomes Clinical practice Guidelines
International Society for Quality of Life Research
Special Interest Group
- 1.Department of Health. (2010). Equity and excellence: Liberating the NHS. London.Google Scholar
- 6.Devlin, N. J., & Appleby, J. (2010). Getting the most out of PROMS: Putting health outcomes at the heart of NHS decision-making. London, United Kingdom: The King’s Fund.Google Scholar
- 7.Ackerley, S. J., Gordon, H. J., Elston, A. F., Crawford, L. M., & McPherson, K. M. (2009). Assessment of quality of life, participation within an outpatient rehabilitation setting. [Erratum appears in Disability, Rehabilitation;31:1107]. Disability and Rehabilitation, 31, 906–913.PubMedCrossRefGoogle Scholar
- 21.McColl, E., & Fayers, P. (2005). Context effects and proxy assessments. In P. Fayers & R. D. Hays (Eds.), Assessing quality of life in clinical trials (pp. 131–148). New York: Oxford.Google Scholar
- 22.Seid, M., Limbers, C. A., Driscoll, K. A., Opipari-Arrigan, L. A., Gelhard, L. R., & Varni, J. W. (2010). Reliability, validity, and responsiveness of the pediatric quality of life inventory (PedsQL) generic core scales and asthma symptoms scale in vulnerable children with asthma. Journal of Asthma, 47, 170–177.PubMedCrossRefGoogle Scholar
- 30.Miller, D. M., Kattan, M. W., & Fu, A. Z. (2007). Health related quality of life assessment in multiple sclerosis. In J. A. Cohen & R. A. Rudick (Eds.), Multiple sclerosis therapeutics (3rd ed., pp. 101–112). Abingdon: Informa.Google Scholar
- 32.Zimmerman, M., Ruggero, C. J., Chelminski, I., et al. (2006). Developing brief scales for use in clinical practice: the reliability and validity of single-item self-report measures of depression symptom severity, psychosocial impairment due to depression, and quality of life. Journal of Clinical Psychiatry, 67, 1536–1541.PubMedCrossRefGoogle Scholar
- 36.University of Oxford Patient-Reported Outcomes Measurement Group. (2011). Reports and publications. http://phi.uhce.ox.ac.uk/newpubs.php. Accessed June 9, 2011.
- 37.Dillman, D. A., Smyth, J. D., & Christian, L. M. (2009). Internet, mail, and mixed-mode surveys: The tailored design method (3rd ed.). New Jersey: Wiley.Google Scholar
- 38.Bickman, L., & Rog, D. J. (2009). The Sage handbook of applied social research methods. London: Sage Publications Ltd.Google Scholar
- 39.Fowley, F. J., Jr. (2009). Survey research methods (4th ed.). London: Sage Publications Ltd.Google Scholar
- 52.Mathias, S. D., Fifer, S. K., Mazonson, P. D., Lubeck, D. P., Buesching, D. P., & Patrick, D. L. (1994). Necessary but not sufficient: The effect of screening and feedback on outcomes of primary care patients with untreated anxiety. Journal of General Internal Medicine, 9, 606–615.PubMedCrossRefGoogle Scholar
- 56.Rosenbloom, S. K., Victorson, D. E., Hahn, E. A., Peterman, A., & Cella, D. (2007). Assessment is not enough: A randomized controlled trial of the effects of HRQoL assessment on quality of life and satisfaction in oncology clinical practice. Psychooncology, 16, 1069–1079.PubMedCrossRefGoogle Scholar
- 57.Gutteling, J. J., Darlington, A. S., Janssen, H. L., Duivenvoorden, H. J., Busschbach, J. J., & de Man, R. A. (2008). Effectiveness of health related quality of life measurement in clinical practice: a prospective, randomised controlled trial in patients with chronic liver disease and their physicians. Quality of Life Research, 17, 195–205.PubMedCrossRefGoogle Scholar
- 63.Kosinski, M., Zhao, S. Z., Dedhiya, S., Osterhaus, J. T., & Ware, J. E. (2000). Determining minimally important changes in generic and disease specific health related quality of life questionnaires in clinical trials of rheumatoid arthritis. Arthritis and Rheumatism, 43, 1478–1487.PubMedCrossRefGoogle Scholar
- 64.Cella, D., Eton, D. T., Lai, J. S., Peterman, A. H., & Merkel, D. E. (2002). Combining anchor and distribution-based methods to derive minimal clinically important differences on the functional assessment of cancer therapy (FACT) anemia and fatigue scales. Journal of Pain and Symptom Management, 24, 547–561.PubMedCrossRefGoogle Scholar
- 73.Campbell, D. T., & Stanley, J. C. (1963). Experimental and Quasi-experimental designs for research. Chicago: Rand McNally College Publishing Company.Google Scholar
- 76.Pawson, R., & Tilley, N. (1997). Realistic evaluation. London: Sage Publications, Ltd.Google Scholar
- 81.Cook, T. D., & Campbell, D. T. (1979). Quasi-experimentation: Design and analysis issues for field settings. Chicago: Rand McNally College Publishing Company.Google Scholar
- 82.Donner, A., & Klar, N. (2000). Design and analysis of cluster-randomized trials in health research. London: Arnold.Google Scholar
- 84.Murray, D. M. (1998). Design and analysis of group-randomized trials. New York: Oxford University Press, Inc.Google Scholar