Value Lies in the Eye of the Patients: The Why,What, and How of Patient-reported Outcomes Measures |
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| Institution: | 1. Centre for Research on Health and Social Care Management, SDA Bocconi Government, Health and Not for Profit Division, Milan, Italy;2. Evidence Synthesis & Modelling for Health Improvement, College of Medicine and Health, University of Exeter Medical School, Exeter, United Kingdom;3. School of Engineering, Warwick University, Coventry, United Kingdom;1. Novartis Pharmaceuticals Oncology, USA, East Hanover, NJ;2. Adelphi Values USA, Boston, Massachusetts;1. Quality of Life Department, European Organisation for Research and Treatment of Cancer, Brussels, Belgium;2. School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada;3. Gustave Roussy Cancer Institute, Villejuif, France;4. Department of Public Health, University of Copenhagen, Copenhagen, Denmark;5. Department of Palliative Medicine, Bispebjerg Hospital, Copenhagen, Denmark;6. Department of Research Support Services, Oslo University Hospital, Oslo, Norway;7. Institute for Clinical Medicine, University of Oslo, Oslo, Norway;8. Department of Neurology and Brain Tumour Center, Amsterdam University Medical Center, Amsterdam, Netherlands;9. St James''s Institute of Oncology, Leeds Teaching Hospitals, Leeds, UK;10. Faculty of Medicine and Health, School of Medicine, University of Leeds, Leeds, UK;1. Department of Pharmacy Practice, National Institute of Pharmaceutical Science, Mohali, India;2. Clinical Pharmacology and Therapeutics, University of Hertfordshire, Hertfordshire, UK;1. Medical University of Innsbruck, University Hospital of Psychiatry II, Innsbruck, Austria;2. Bristol Centre for Surgical Research and Bristol Biomedical Research Centre, Population Health Sciences, University of Bristol, Bristol, England, UK;3. Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam, The Netherlands;4. Department of Medical Psychology, Amsterdam University Medical Centers, Amsterdam, The Netherlands;5. Institute of Applied Health Sciences, University of Aberdeen, Aberdeen, Scotland, England, UK;6. Italian Group for Adult Hematologic Diseases, Data Center and Health Outcomes Research Unit, Rome, Italy;7. Methodology and Quality of Life in Oncology Unit (INSERM UMR 1098), University Hospital of Besançon, Besançon, France;8. French National Platform Quality of Life and Cancer, Besançon, France;9. Guangdong Medical University, School of Humanities and Management, Research Center for Quality of Life and Applied Psychology, Dongguan, China;10. Division of Vascular Surgery, Department of Surgery, New York University Langone Medical Center, New York, NY, USA;11. Department of Urology, University of Virginia, Charlottesville, VA, USA;1. European Organisation for Research and Treatment of Cancer (EORTC Headquarters), Brussels, Belgium;2. Alliance Statistics and Data Center, Mayo Clinic, Rochester, MN, USA;3. Lineberger Comprehensive Cancer Center, University of North Carolina, Chapel Hill, NC, USA;4. Methodology and Quality of Life Unit in Cancer, INSERM U1098, Universitary Hospital of Besançon, Besançon, France;5. Centre for Patient Reported Outcomes Research, Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, UK;6. Genentech, a member of the Roche group, San Francisco, CA, USA;7. Department of Symptom Research, The University of Texas MD Anderson Cancer Center, Houston, TX, USA;8. Adelphi Values, Bollington, Cheshire, UK;9. Alliance Statistics and Data Center, Mayo Clinic, Scottsdale, AZ, USA;10. Office of Health Economics, London, UK;11. Clinic for Child and Adolescent Psychiatry and Psychotherapy, University of Magdeburg, Magdeburg, Germany;12. School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada;13. Obstetrics and Gynecology, Medical University Graz, Graz, Austria;14. Boehringer-Ingelheim, Frankfurt, Germany;15. Department of Public Health and Bispebjerg Hospital, University of Copenhagen, Copenhagen, Denmark;p. Methodology and Biostatistics department, University Hospital of Angers UNAM, Angers, France;q. School of Psychology and Sydney Medical School, University of Sydney, Sydney, NSW, Australia;r. Office of Hematology and Oncology Products, Center for Drug Evaluation and Research, US Food and Drug Administration, Silver Spring, MA, USA;s. Center for Clinical Studies, University Hospital Regensburg, Regensburg, Germany;t. College of Pharmacy, University of Arizona, Tucson, AZ, USA;u. Outcomes Research Branch, Healthcare Delivery Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, USA;v. Fred Hutchinson Cancer Research Center, Seattle, WA, USA;w. Medicines and Healthcare products Regulatory Agency, London, UK;x. International Brain Tumour Alliance, Surrey, UK;y. Internal Medicine/Oncology, Institut Jules Bordet, Brussels, Belgium;z. Health Sciences, University of Aveiro, Aveiro, Portugal;11. Lenitudes Medical Center & Research, Santa Maria da Feira, Portugal;12. European Centre for Disease Prevention and Control, Surveillance and Response Support Unit, Epidemiological Methods Section, Stockholm, Sweden;13. VU University Medical Center, Department of Neurology & Brain Tumor Center, Amsterdam, The Netherlands;14. Institute for Quality and Efficiency in Health Care, Cologne, Germany;15. Health Canada, Ottawa, ON, Canada;16. Leiden University Medical Center/Medical Center Haaglanden, Leiden/The Hague, Netherlands;17. Leeds Institute of Cancer and Pathology, University of Leeds, St James’s Hospital, Leeds, UK |
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| Abstract: | Patient-reported outcomes (PROs) are any report of the status of a patient's health condition that comes directly from the patient (or in some cases from a caregiver or surrogate responder), without interpretation by a practitioner or anyone else. PROs are increasingly used as a valuable source of data in different domains of health care, including research, clinical practice, health care management, and decision making on the regulation, coverage, and reimbursement of new technologies. Several factors must be considered when selecting which PRO measure to use to ensure their appropriate use and interpretation as well as their relevance for decision makers. The increasing availability of PRO data, its integration with other data sources, and the improvements in data analytics offer a valuable opportunity to place the patient at the center of any health care process. However, several issues need to be addressed, including interoperability, data governance, security, privacy, and ethics, to realize an effective, integrated, standardized, real-time assessment of PROs in the health care systems. |
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| Keywords: | health care decision making health care management patient-reported outcomes PRO PROM value frameworks |
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