Skip to main navigation menu Skip to main content Skip to site footer
##common.pageHeaderLogo.altText##

Original article

Vol. 153 No. 11 (2023)

A Swiss digital Delphi study on patient-reported outcomes

  • Matthew J. Kerry
  • Thomas Volken
  • Nikola Biller-Andorno
  • Andrea Glässel
  • Markus Melloh
DOI
https://doi.org/10.57187/smw.2023.40125
Cite this as:
Swiss Med Wkly. 2023;153:40125
Published
21.11.2023

Summary

AIMS OF THE STUDY: Health-related quality of life (HRQoL) indicators are patient-reported outcomes (PROs). PROs are defined as any report of the status of a patient’s health condition or health behaviour that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else. Despite Swiss national bodies (FOPH, FMH) recognising the potential of PRO measures (PROMs) for improving the health system, no consensus has yet emerged regarding a generic PROM framework or specific domains for practical uptake. The aim of the present digital Delphi study was to generate a consensual Swiss expert opinion on a generic PROM framework, measurement domains and items from a validated instrument (PROMIS [Patient-Reported Outcome Measurement Information System]) as well as on the role and implementation of PROs in the Swiss healthcare system via PRO consensus statements.

METHODS: A 4-round digital Delphi study was conducted among Swiss PRO stakeholders. A total of n = 21 Swiss PROM stakeholders completed round 1 surveys on the PROM framework. During the stakeholder meeting, n = 11 stakeholders completed round 2 and round 3 surveys pertaining to measurement domains and items, respectively. In-meeting key questions and discussion items were extracted, consolidated into statements and subjected to consensus voting in a round 4, post-meeting survey. Consensus was defined as ≥70% agreement.

RESULTS: Pre-meeting, agreement was reached for the tripartite framework of physical, mental and social health (95–100%). During the meeting, agreement was reached on all seven measurement domains of a generic PROM (PROMIS-29), ranging from 80% (Anxiety, Sleep Disturbance) to 100% (Pain Interference, Depression, Ability to Participate in Social Roles). Consensus was also reached for all PROMIS-29 items, with average domain consensus ranging from 83% (Sleep Disturbance, Ability to Participate in Social Roles) to 100% (Depression). Finally, four post-meeting consensus statements regarding PROs in Switzerland reached agreement.

CONCLUSIONS: A Delphi method can help identify areas of need regarding PROMs in Switzerland. The current study identified a generic PROM as a missing quality indicator for the Swiss national health system’s value. A pre-meeting informational briefing, expert presentations and moderation supported three voting rounds to help identify PROMIS-29 as a PROM framework (round 1), measurement domains (round 2) and items (round 3) as a basis for further validation research. The empirical agreement among diverse stakeholders supports broad consensus towards preliminary feasibility of integrating generic PROMs into the Swiss health system based on content relevance.

References

  1. Erickson P, Patrick D. Health status and health policy: quality of life in health care evaluation and resource allocation. New York: Oxford University Press; 1993.
  2. Weszl M, Rencz F, Brodszky V. Is the trend of increasing use of patient-reported outcome measures in medical device studies the sign of shift towards value-based purchasing in Europe? Eur J Health Econ. 2019 Jun;20(1 Suppl 1):133–40. 10.1007/s10198-019-01070-1 DOI: https://doi.org/10.1007/s10198-019-01070-1
  3. Teisberg E, Katz G, Deerberg-Wittram J. Patient-Reported Outcome Measures (PROMs). In: Rüter F, Biller-Andorno N, Steiger J, and Meier CA. The 3rd Annual Value Based Health Care Symposium. 2021 June 17; University Hospital of Basel, Switzerland.
  4. Meier CA. Variations of care and diagnosis as markers for the quality of medical care in Switzerland. Swiss Med Wkly. 2019 Feb;149(0708):w20029. 10.4414/smw.2019.20029 DOI: https://doi.org/10.4414/smw.2019.20029
  5. Vincent C, Staines A. Enhancing the Quality and Safety of Swiss Healthcare. A national report commissioned by the FOPH on the quality and safety of healthcare in Switzerland. Bern; 2019. doi: https://doi.org/10.13140/RG.2.2.22966.04160
  6. Allegranzi B, Björn B, Burnand B, Chopard P, Conen D, Pfaff H, et al. Qualität und sicherheit der Schweizerischen gesundheitsversorgung verbessern. Empfehlungen und vorschläge für die Bundesstrategie. Bundesamt für Gesundheit. 2017; 2. Bericht. https://www.bag.admin.ch/dam/bag/de/dokumente/kuv-leistungen/qualitaetssicherung/second-report-advisory-board-30-06-2017.pdf.download.pdf/second-report-advisory-board-30-06-2017-de.pdf
  7. Hostettler S, Kraft E, Bosshard C. Patient-reported outcome measures: die Patientensicht zählt. Schweiz Arzteztg. 2018;99(40):1348–52. 10.4414/saez.2018.17187 DOI: https://doi.org/10.4414/saez.2018.17187
  8. Turoff M, Hiltz S. Computer based Delphi processes. In: Adler M, Ziglio E, editors. Gazing into the Oracle: The Delphi Method and its Application to Social Policy and Public Health. London: Jessica Kingsley Publishers; 1995. pp. 56–88.
  9. Bykerk VP. Patient-reported outcomes measurement information system versus legacy instruments: are they ready for prime time? Rheum Dis Clin North Am. 2019 May;45(2):211–29. 10.1016/j.rdc.2019.01.006 DOI: https://doi.org/10.1016/j.rdc.2019.01.006
  10. Alonso J, Bartlett SJ, Rose M, Aaronson NK, Chaplin JE, Efficace F, et al.; PROMIS International Group. The case for an international patient-reported outcomes measurement information system (PROMIS®) initiative. Health Qual Life Outcomes. 2013 Dec;11(1):210. 10.1186/1477-7525-11-210 DOI: https://doi.org/10.1186/1477-7525-11-210
  11. Hays RD, Spritzer KL, Fries JF, Krishnan E. Responsiveness and minimally important difference for the patient-reported outcomes measurement information system (PROMIS) 20-item physical functioning short form in a prospective observational study of rheumatoid arthritis. Ann Rheum Dis. 2015 Jan;74(1):104–7. 10.1136/annrheumdis-2013-204053 DOI: https://doi.org/10.1136/annrheumdis-2013-204053
  12. Gulledge CM, Smith DG, Ziedas A, Muh SJ, Moutzouros V, Makhni EC. Floor and ceiling effects, time to completion, and question burden of PROMIS CAT domains among shoulder and knee patients undergoing nonoperative and operative treatment. JBJS Open Access. 2019 Dec;4(4):e0015.1-7. 10.2106/JBJS.OA.19.00015 DOI: https://doi.org/10.2106/JBJS.OA.19.00015
  13. Thompson NR, Lapin BR, Katzan IL. Mapping PROMIS global health items to EuroQol (EQ-5D) utility scores using linear and equipercentile equating. PharmacoEconomics. 2017 Nov;35(11):1167–76. 10.1007/s40273-017-0541-1 DOI: https://doi.org/10.1007/s40273-017-0541-1
  14. Calvert M, Kyte D, Price G, Valderas JM, Hjollund NH. Maximising the impact of patient reported outcome assessment for patients and society. BMJ. 2019 Jan;364:k5267. 10.1136/bmj.k5267 DOI: https://doi.org/10.1136/bmj.k5267
  15. Crossnohere NL, Brundage M, Calvert MJ, King M, Reeve BB, Thorner E, et al. International guidance on the selection of patient-reported outcome measures in clinical trials: a review. Qual Life Res. 2020;14:1–20. 10.1007/s11136-020-02625-z DOI: https://doi.org/10.1007/s11136-020-02625-z
  16. Cella D, Yount S, Rothrock N, Gershon R, Cook K, Reeve B, et al.; PROMIS Cooperative Group. The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years. Med Care. 2007 May;45(5 Suppl 1):S3–11. 10.1097/01.mlr.0000258615.42478.55 DOI: https://doi.org/10.1097/01.mlr.0000258615.42478.55
  17. Roser K, Mader L, Baenziger J, Sommer G, Kuehni CE, Michel G. Health-related quality of life in Switzerland: normative data for the SF-36v2 questionnaire. Qual Life Res. 2019 Jul;28(7):1963–77. 10.1007/s11136-019-02161-5 DOI: https://doi.org/10.1007/s11136-019-02161-5
  18. Terwee CB, Prinsen CA, Chiarotto A, Westerman MJ, Patrick DL, Alonso J, et al. COSMIN methodology for evaluating the content validity of patient-reported outcome measures: a Delphi study. Qual Life Res. 2018 May;27(5):1159–70. 10.1007/s11136-018-1829-0 DOI: https://doi.org/10.1007/s11136-018-1829-0
  19. Stone AA, Bachrach CA, Jobe JB, Kurtzman HS, Cain VS, editors. The science of self-report: Implications for research and practice. Psychology Press; 1999. 10.4324/9781410601261 DOI: https://doi.org/10.4324/9781410601261
  20. Pan T, Mulhern B, Viney R, Norman R, Tran-Duy A, Hanmer J, et al. Evidence on the relationship between PROMIS-29 and EQ-5D: A literature review. Qual Life Res. 2021;28: 10.1007/s11136-021-02911-4 DOI: https://doi.org/10.1007/s11136-021-02911-4
  21. Churruca K, Pomare C, Ellis LA, Long JC, Henderson SB, Murphy LE, et al. Patient-reported outcome measures (PROMs): A review of generic and condition-specific measures and a discussion of trends and issues. Health Expect. 2021 Aug;24(4):1015–24. 10.1111/hex.13254 DOI: https://doi.org/10.1111/hex.13254
  22. Audigé L, Bucher HC, Aghlmandi S, Stojanov T, Schwappach D, Hunziker S, et al.; ARCR_Pred Study Group. Swiss-wide multicentre evaluation and prediction of core outcomes in arthroscopic rotator cuff repair: protocol for the ARCR_Pred cohort study. BMJ Open. 2021 Apr;11(4):e045702. 10.1136/bmjopen-2020-045702 DOI: https://doi.org/10.1136/bmjopen-2020-045702

Most read articles by the same author(s)

1 2 > >>