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Patient-reported outcomes: pathways to better health, better services, and better societies

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Abstract

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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Acknowledgments

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.

Author contributions

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.

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Authors and Affiliations

  1. Department of Health Services Research and Policy, London School of Hygiene & Tropical Medicine, London, WC1H 9SH, UK

    N. Black

  2. LORA Group, LLC, Royal Oak, MD, USA

    L. Burke

  3. Department of Pediatrics, The Children’s Hospital of Philadelphia, Philadelphia, PA, USA

    C. B. Forrest

  4. Department of Pediatrics, University of Pennsylvania School of Medicine, Philadelphia, PA, USA

    U. H. Ravens Sieberer

  5. Faculty of Medicine, McGill University, Montreal, QC, Canada

    S. Ahmed & S. J. Bartlett

  6. School of Physical and Occupational Therapy, University Health Center’s Division of Clinical Epidemiology, Clinical and Health Informatics, Montreal, QC, Canada

    S. Ahmed

  7. Centre de recherche interdisciplinaire en réadaptation, Montreal, QC, Canada

    S. Ahmed

  8. Health Services & Policy Research, Exeter Collaboration for Academic Primary Care (APEx) (Person Centred Care), University of Exeter Medical School, University of Exeter, Exeter, UK

    J. M. Valderas

  9. Health Services Research Unit, IMIM (Hospital del Mar Medical Research Institute), Barcelona, Spain

    J. Alonso

  10. CIBER Epidemiología y Salud Pública (CIBERESP), Barcelona, Spain

    J. Alonso

  11. Pompeu Fabra University (UPF), Barcelona, Spain

    J. Alonso

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  1. N. Black
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  2. L. Burke
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  3. C. B. Forrest
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  4. U. H. Ravens Sieberer
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  5. S. Ahmed
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  6. J. M. Valderas
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Corresponding author

Correspondence to S. J. Bartlett.

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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).

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This article does not contain any studies with animals performed by any of the authors.

Additional information

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

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