While the use of PROs in research is well established, many challenges lie ahead as their use is extended to other applications. There is consensus that health outcome evaluations that include PROs along with clinician-reported outcomes and administrative data are necessary to inform clinical and policy decisions. The initiatives presented in this paper underline evolving recognition that PROs play a unique role in adding the patient perspective alongside clinical (e.g., blood pressure) and organizational (e.g., admission rates) indicators for evaluating the effects of new products, selecting treatments, evaluating quality of care, and monitoring the health of the population. In this paper, we first explore the use of PRO measures to support drug approval and labeling claims. We critically evaluate the evidence and challenges associated with using PRO measures to improve healthcare delivery at individual and population levels. We further discuss the challenges associated with selecting from the abundance of measures available, opportunities afforded by agreeing on common metrics for constructs of interest, and the importance of establishing an evidence base that supports integrating PRO measures across the healthcare system to improve outcomes. We conclude that the integration of PROs as a key end point within individual patient care, healthcare organization and program performance evaluations, and population surveillance will be essential for evaluating whether increased healthcare expenditure is translating into better health outcomes.
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Valderas, J. M., & Alonso, J. (2008). Patient reported outcome measures: A model-based classification system for research and clinical practice. Quality of Life Research, 17(9), 1125–1135.
Quality of Life Instruments Database-PROQOLID [computer program] (2010). Lyon, France: Mapi Research Institute.
Greenhalgh, J. (2009). The applications of PROs in clinical practice: What are they, do they work, and why? Quality of Life Research, 18(1), 115–123.
Valderas, J. M., Kotzeva, A., Espallargues, M., Guyatt, G., Ferrans, C., Revicki, D., et al. (2008). The impact of measuring patient-reported outcomes in clinical practice: A systematic review of the literature. Quality of Life Research, 17(2), 179–193.
Health & Social Care Information Centre. Patient Reported Outcome Measures. http://www.hscic.gov.uk/PROs. Accessed 19 January 2015.
Forrest, C. B. (2013). Digitization of patient-reported outcomes. Value in Health, 16(4), 459.
DSM-5 American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders. Arlington: American Psychiatric Publishing.
Kane, R. L., et al. (1994). Essentials of clinical geriatrics. New York: McGraw-Hill.
Act of October 10, 1962 (Drug Amendments Act of 1962), Public Law 87-781, 76 STAT 780, which amended the Federal Food, Drug, and Cosmetic Act to assure the safety, effectiveness, and reliability of drugs, authorize standardization of drug names, and clarify and strengthen existing inspection authority, 10/10/1962.
US Food and Drug Administration. Roadmap to Patient-Focused Outcome Measurement in Clinical Trials. http://www.fda.gov/Drugs/DevelopmentApprovalProcess/DrugDevelopmentToolsQualificationProgram/ucm370177.htm. Accessed 19 January 2015.
Black, N. (2013). Patient reported outcome measures could help transform healthcare. BMJ, 346, 19–21.
Hutchings, A., Neuburger, J., van der Meulen, J., & Black, N. (2014). Estimating recruitment rates for routine use of patient reported outcome measures and the impact on provider comparisons. BMC Health Services Research, 14, 66. doi:10.1186/1472-696314-66.
Hutchings, A., Neuburger, J., Gross Frie, K., van der Meulen, J., & Black, N. (2012). Factors associated with non-response in routine use of patient reported outcome measures after elective surgery in England. Health and Quality of Life Outcomes, 10, 34.
Black, N., Varagunam, M., & Hutchings, A. (2014). Relationship between patient reported experience (PREMs) and patient reported outcomes (PROs) in elective surgery. BMJ Quality & Safety, 23, 534–542.
Neuburger, J., Hutchings, A., van der Meulen, J., & Black, N. (2013). Using patient reported outcomes (PROs) to compare the performance of providers: Does the choice of measure matter? Medical Care, 51(6), 517–523.
Black, N., Varagunam, M., & Hutchings, A. (2014). Influence of surgical rate on patients’ reported clinical need and outcomes in English NHS. Journal of Public Health, 36(3), 497–503.
Varagunam, M., Hutchings, A., & Black, N. (2015). Relationship between patient-reported outcomes of elective surgery and hospital and consultant volume. Medical Care, 53(4), 310–316.
Feng, Y., Pistollato, M., Charlesworth, A., Devlin, N., Propper, C., & Sussex, J. (2014). Association between market concentration of hospitals and patient health gain following hip replacement surgery. Journal of Health Services Research & Policy. doi:10.1177/1355819614546032.
Varagunam, M., Hutchings, A., & Black, N. (2014). Do patient reported outcomes offer a more sensitive method for comparing the outcomes of consultants than mortality? A multi-level analysis of routine data. BMJ Quality & Safety. doi:10.1136/bmjqs-2014-003551.
Varagunam, M., Hutchings, A., Neuburger, J., & Black, N. (2014). Impact on hospital performance of introducing routine patient reported outcome measures (PROs) in surgery. Journal of Health Services Research & Policy, 19, 77–84.
Greenhalgh, J., Pawson, R., Wright, J., Black, N., Valderas, J. M., Meads, D., et al. (2014). Functionality and feedback: A protocol for a realist synthesis of the collation, interpretation and utilisation of PROs data to improve patient care. BMJ Open, 4, e005601. doi:10.1136/bmjopen-2014-005601.
Van der Wees, P. J., Nijhuis-van der Sanden, M. W. G., Ayanian, J. Z., Black, N., Westert, G. P., & Schneider, E. C. (2014). Integrating the use of patient-reported outcomes for both clinical practice and for performance measurement: Experts’ views from three countries. The Milbank Quarterly, 92, 754–775.
World Health Organization (WHO). (2004). Promoting mental health: Concepts, emerging evidence, practice. Geneva: World Health Organization. http://www.who.int/mental_health/evidence/en/promoting_mhh.pdf. 17 January 2013.
Kieling, C., Baker-Henningham, H., Belfer, M., Conti, G., Ertem, I., Omigbodun, O., et al. (2011). Child and adolescent mental health worldwide: Evidence for action. The Lancet, 378(9801), 1515–1525.
Wille, N., & Ravens-Sieberer, U. (2010). How to assess resilience: Reflections on a measurement model. In A. Morgan, E. Ziglio, & M. Davies (Eds.), Health assets in a global context (pp. 117–144). New York, NY: Springer.
Erhart, M., Ottova, V., Gaspar, T., Jericek, H., Schnohr, C., Alikasifoglu, M., et al. (2009). Measuring mental health and well-being of school-children in 15 European countries using the KIDSCREEN-10 Index. International Journal of Public Health, 54(Suppl. 2), S160–S166. doi:10.1007/s00038-009-5407-7.
Mortimer, J., & Larson, R. (2002). The changing adolescent experience: Societal trends and the transition to adulthood. Cambridge: Cambridge University Press.
Ravens-Sieberer, U., Wille, N., Erhart, M., Nickel, J., & Richter, M. (2008). Socioeconomic inequalities in mental health among adolescents in Europe. In World Health Organization (Ed.), Social cohesion for mental well-being among adolescents (pp. 26–42). Copenhagen: WHO Regional Office for Europe.
Ravens-Sieberer, U., Torsheim, T., Hetland, J., Vollebergh, W., Cavallo, F., Jericek, H., et al. (2009). Subjective health, symptom load and quality of life of children and adolescents in Europe. International Journal of Public Health, 54(Suppl. 2), S151–S159. doi:10.1007/s00038-009-5406-8.
Currie, C. et al. (Eds.). (2012). Social determinants of health and well-being among young people. Health Behaviour in School-aged Children (HBSC) study: International report from the 2009/2010 survey. Copenhagen, WHO Regional Office for Europe (Health Policy for Children and Adolescents, No. 6).
Ravens-Sieberer, U., Horka, H., Illyes, A., Rajmil, L., Ottova-Jordan, V., & Erhart, M. (2013). Children’s quality of life in Europe: National wealth and familial socioeconomic position explain variations in mental health and wellbeing—A multilevel analysis in 27 EU countries. Public Health, 2013, 1–9. doi:10.1155/2013/419530.
Barnekow, V., & Muijen, M. (2009). Child and adolescent health and development in an European perspective. International Journal of Public Health, 54(Suppl. 2), S128–S130.
Ottova, V., & Ravens-Sieberer, U. (2010). Social determinants in child health: Reflections from the Health Behaviour in School-aged Children survey. International Journal of Public Health, 55(6), 525–526. doi:10.1007/s00038-010-0208-6.
Maher, I., & Waters, E. (2005). Indicators of positive mental health for children. In H. Herrman, S. Saxena & , R. Moodie (Eds.), Promoting mental health: Concepts, emerging evidence, practice (pp. 159–168), 92 4 156294 3. Geneva: World Health Organization.
Ottova, V., Denise, A., Rigby, M., Staines, A., Hjern, A., Leonardi, M., et al. (2013). Research inventory of child health: A report on roadmaps for the future of child health research in Europe. A European Commission Framework 7 Project 2010–2013. http://www.childhealthresearch.eu/Members/jkilroe/report-on-the-roadmaps-for-the-future-of-european-child-health-research/view. 27 November 2014.
Korkeila, J., Tuomi-Nikula, A., Wahlbeck, K., Lehtinen, V., & Lavikainen, J. (2006). Proposal for a harmonised set of mental health indicators. Improving mental health information in Europe, Lavikainen, Fryers & Lehtinen (pp. 107–116). Helsinki: Stakes and European Union.
Office of Disease Prevention and Health Promotion. About Healthy People. https://www.healthypeople.gov/2020/About-Healthy-People. Accessed 18 November 2014.
Fleurence, R. L., Curtis, L. H., Califf, R. M., Platt, R., Selby, J. V., & Brown, J. S. (2014). Launching PCORnet, a national patient-centered clinical research network. Journal of the American Medical Informatics Association, 21(4), 578–582.
IOM (Institute of Medicine). (2014). Capturing social and behavioral domains and measures in electronic health records: Phase 2. Washington, DC: The National Academies Press.
Hays, R. D., Bjorner, J. B., Revicki, D. A., Spritzer, K. L., & Cella, D. (2009). Development of physical and mental health summary scores from the patient-reported outcomes measurement information system (PROMIS) global items. Quality of Life Research, 18(7), 873–880.
Forrest, C. B., Margolis, P., Seid, M., & Colletti, R. B. (2014). PEDSnet: How a prototype pediatric learning health system is being expanded into a national network. Health Affairs (Millwood), 33(7), 1171–1177.
Behforouz, H. L., Drain, P. K., & Rhatigan, J. J. (2014). Rethinking the social history. New England Journal of Medicine, 371(14), 1277–1279.
PROsetta Stone® Linking Patient Reported Outcome Measures. http://www.prosettastone.org. Accessed 10 October 2015.
Valderas, J. M., Ferrer, M., Mendivil, J., Rajmil, L., & Alonso, J. (2008). Development of a standardized assessment tool for patient reported outcomes: A pilot test with the EMPRO instrument. Value Health, 11(4), 700–708.
Mokkink, L. B., Terwee, C. B., Patrick, D. L., Alonso, J., Stratford, P. W., Knol, D. L., et al. (2010). International consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes: Results of the COSMIN study. Journal of Clinical Epidemology, 63, 737–745.
Valderas, J. M., Alonso, J., Prieto, L., Espallargues, M., & Castells, F. X. (2004). Content-based interpretation aids for health-related quality of life measures in clinical practice. An example for the visual function index VF-14. Quality of Life Research, 13, 35–44.
Gonçalves Bradley, D. C., Gibbons, C., Ricci-Cabello, I., Bobrovitz, N. J. H., Gibbons, E. J., Kotzeva, A., et al. (2015). Routine provision of information on patient-reported outcome measures to healthcare providers and patients in clinical practice. Cochrane Database of Systematic Reviews. doi:10.1002/14651858.CD011589.
Forrest, C. B., Margolis, P. A., Bailey, L. C., Marsolo, K., Del, Beccaro M. A., Finkelstein, J. A., et al. (2014). Kahn MG.PEDSnet: a National Pediatric Learning Health System. Journal of the American Medical Informatics Association, 21, 602–606. doi:10.1136/amiajnl-2014-002743.
The work was presented in the Plenary session “Patient-Reported Outcomes: contributing to better services and better societies” at the 2014 Annual Meeting of the International Society for Quality of Life Research (ISOQOL) in Berlin, Germany. We would like to thank ISOQOL for their support in the organization of the teleconferences leading to the preparation of the session and to a very engaged audience for their questions, which have helped shape the discussion of several points in this manuscript.
This plenary was held Thursday, October 16, 2014, in Berlin, Germany. J.A. and S.J.B. conceived the session and provided steer for the preparation of the plenary and manuscript and contributed equally to the manuscript. S.A. and J.V. organized the session and served as co-chairs. S.A. developed summaries of the panel discussion. N.B., L.B., C.B.F., and U.H.R.S. contributed equally to the content of the session and to the manuscript. N.B., L.B., and C.B.F. were featured speakers. S.A. and J.V. equally co-led the development of manuscript based on drafted sections by N.B., L.B., C.B.F., and U.H.R.S., summarizing their talks. All authors helped revise and improve initial drafts and read and approved the final manuscript.
Conflicts of interest
The authors do not report any other conflict or potential conflict of interest. Jose M. Valderas was supported by an NIHR Clinician Scientist Award (NIHR/CS/010/024).
This article does not contain any studies with animals performed by any of the authors.
N. Black, L. Burke, and C. B. Forrest are co-first authors.
S. J. Bartlett and J. Alonso are co-senior authors.
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Black, N., Burke, L., Forrest, C.B. et al. Patient-reported outcomes: pathways to better health, better services, and better societies. Qual Life Res 25, 1103–1112 (2016). https://doi.org/10.1007/s11136-015-1168-3
- Patient-reported outcomes
- Health evaluations
- Health services
- Population monitoring