Skip to main content
Top
Gepubliceerd in: Quality of Life Research 5/2016

01-05-2016 | Commentary

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

Auteurs: N. Black, L. Burke, C. B. Forrest, U. H. Ravens Sieberer, S. Ahmed, J. M. Valderas, S. J. Bartlett, J. Alonso

Gepubliceerd in: Quality of Life Research | Uitgave 5/2016

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

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.
Literatuur
1.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
2.
go back to reference Quality of Life Instruments Database-PROQOLID [computer program] (2010). Lyon, France: Mapi Research Institute. Quality of Life Instruments Database-PROQOLID [computer program] (2010). Lyon, France: Mapi Research Institute.
3.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
4.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
6.
go back to reference Forrest, C. B. (2013). Digitization of patient-reported outcomes. Value in Health, 16(4), 459. CrossRefPubMed Forrest, C. B. (2013). Digitization of patient-reported outcomes. Value in Health, 16(4), 459.      CrossRefPubMed
7.
go back to reference DSM-5 American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders. Arlington: American Psychiatric Publishing.CrossRef DSM-5 American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders. Arlington: American Psychiatric Publishing.CrossRef
8.
go back to reference Kane, R. L., et al. (1994). Essentials of clinical geriatrics. New York: McGraw-Hill. Kane, R. L., et al. (1994). Essentials of clinical geriatrics. New York: McGraw-Hill.
9.
go back to reference 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. 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.
11.
go back to reference Black, N. (2013). Patient reported outcome measures could help transform healthcare. BMJ, 346, 19–21.CrossRef Black, N. (2013). Patient reported outcome measures could help transform healthcare. BMJ, 346, 19–21.CrossRef
13.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
14.
go back to reference 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.CrossRef 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.CrossRef
15.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
16.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
17.
go back to reference 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. PubMed 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. PubMed
18.
go back to reference 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. 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​.
19.
go back to reference 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., & 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.
20.
go back to reference 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.CrossRef 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.CrossRef
21.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
22.
go back to reference 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.CrossRef 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.CrossRef
24.
go back to reference 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.CrossRef 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.CrossRef
25.
go back to reference 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.CrossRef 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.CrossRef
26.
go back to reference 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.CrossRef 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.CrossRef
27.
go back to reference Mortimer, J., & Larson, R. (2002). The changing adolescent experience: Societal trends and the transition to adulthood. Cambridge: Cambridge University Press.CrossRef Mortimer, J., & Larson, R. (2002). The changing adolescent experience: Societal trends and the transition to adulthood. Cambridge: Cambridge University Press.CrossRef
28.
go back to reference 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., 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.
29.
go back to reference 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.CrossRef 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.CrossRef
30.
go back to reference 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). 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).
31.
go back to reference 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. 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.
32.
go back to reference 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.CrossRef 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.CrossRef
33.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
34.
go back to reference 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. 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.
36.
go back to reference 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. 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.
38.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
39.
go back to reference IOM (Institute of Medicine). (2014). Capturing social and behavioral domains and measures in electronic health records: Phase 2. Washington, DC: The National Academies Press. IOM (Institute of Medicine). (2014). Capturing social and behavioral domains and measures in electronic health records: Phase 2. Washington, DC: The National Academies Press.
40.
go back to reference 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.CrossRefPubMedPubMedCentral 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.CrossRefPubMedPubMedCentral
41.
go back to reference 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.CrossRef 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.CrossRef
42.
go back to reference Behforouz, H. L., Drain, P. K., & Rhatigan, J. J. (2014). Rethinking the social history. New England Journal of Medicine, 371(14), 1277–1279.CrossRefPubMed Behforouz, H. L., Drain, P. K., & Rhatigan, J. J. (2014). Rethinking the social history. New England Journal of Medicine, 371(14), 1277–1279.CrossRefPubMed
44.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
45.
go back to reference 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.CrossRef 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.CrossRef
46.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
47.
go back to reference 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. 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.
Metagegevens
Titel
Patient-reported outcomes: pathways to better health, better services, and better societies
Auteurs
N. Black
L. Burke
C. B. Forrest
U. H. Ravens Sieberer
S. Ahmed
J. M. Valderas
S. J. Bartlett
J. Alonso
Publicatiedatum
01-05-2016
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 5/2016
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-015-1168-3

Andere artikelen Uitgave 5/2016

Quality of Life Research 5/2016 Naar de uitgave