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Peters, M; Potter, CM; Kelly, L; Hunter, CA; Gibbons, E; Jenkinson, C; Coulter, A; Forder, J; Towers, AM; A'Court, C; Fitzpatrick, R (2016)
Publisher: Dove Medical Press
Languages: English
Types: Article
Purpose: To identify the main issues of importance when living with long-term conditions to refine a conceptual framework for informing the item development of a patient-reported outcome measure for long-term conditions. Materials and methods: Semi-structured qualitative interviews (n=48) were conducted with people living with at least one long-term condition. Participants were recruited through primary care. The interviews were transcribed verbatim and analyzed by thematic analysis. The analysis served to refine the conceptual framework, based on reviews of the literature and stakeholder consultations, for developing candidate items for a new measure for long-term conditions. Results: Three main organizing concepts were identified: impact of long-term conditions, experience of services and support, and self-care. The findings helped to refine a conceptual framework, leading to the development of 23 items that represent issues of importance in long-term conditions. The 23 candidate items formed the first draft of the measure, currently named the Long-Term Conditions Questionnaire. Conclusion: The aim of this study was to refine the conceptual framework and develop items for a patient-reported outcome measure for long-term conditions, including single and multiple morbidities and physical and mental health conditions. Qualitative interviews identified the key themes for assessing outcomes in long-term conditions, and these underpinned the development of the initial draft of the measure. These initial items will undergo cognitive testing to refine the items prior to further validation in a survey.
  • The results below are discovered through our pilot algorithms. Let us know how we are doing!

    • 1. Appleby J, Devlin NJ. Getting the Most out of PROMs: Putting Health Outcomes at the Heart of NHS decision-making. London: King's Fund; 2010.
    • 2. Black N. Patient reported outcome measures could help transform healthcare. BMJ. 2013;346:f167.
    • 3. Turner RR, Quittner AL, Parasuraman BM, Kallich JD, Cleeland CS. Patient-reported outcomes: instrument development and selection issues. Value Health. 2007;10 Suppl 2:S86-S93.
    • 4. Rothman ML, Beltran P, Cappelleri JC, Lipscomb J, Teschendorf B. Patient-reported outcomes: conceptual issues. Value Health. 2007;10 Suppl 2:S66-S75.
    • 5. US Food and Drug Administration. Guidance for Industry: PatientReported Outcome Measures: Use in Medical Product Development to Support Labeling Claims. Silver Spring (MD): FDA; 2009.
    • 6. Pearson W, Bhat-Schelbert K, Probst J. Multiple chronic conditions and the aging of America: a challenge for primary care physicians. J Prim Care Community Health. 2012;3(1):51-56.
    • 7. Barnett K, Mercer SW, Norbury M, Watt G, Wyke S, Guthrie B. Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. Lancet. 2012;380(9836): 37-43.
    • 8. Moth G, Vestergaard M, Vedsted P. Chronic care management in Danish general practice: a cross-sectional study of workload and multimorbidity. BMC Fam Pract. 2012;13:52.
    • 9. Anderson G, Horvath J. The growing burden of chronic disease in America. Public Health Rep. 2004;119:263-270.
    • 10. Fortin M, Lapointe L, Hudon C, Vanasse A, Ntetu A, Maltais D. Multimorbidity and quality of life in primary care: a systematic review. Health Qual Life Outcomes. 2004;2:51.
    • 11. UK Department of Health. The NHS Outcomes Framework 2013/14. London: MH; 2012.
    • 12. UK Department of Health. The Adult Social Care Framework 2014/15. London: MH; 2013.
    • 13. McGrail K, Bryan S, Davis J. Let's all go to the PROM: the case for routine patient-reported outcome measurement in Canadian healthcare. Healthc Pap. 2012;11(4):8-13.
    • 14. Hjollund NH, Larsen LP, Biering K, Johnsen SP, Riiskjaer E, Schougaard LM. Use of patient-reported outcome (PRO) measures at group and patient levels: experiences from the generic integrated PRO System, WestChronic. Interact J Med Res. 2014;3(1):e5.
    • 15. Peters M, Crocker H, Jenkinson C, Doll H, Fitzpatrick R. The routine collection of patient-reported outcome measures (PROMs) for longterm conditions in primary care: a cohort survey. BMJ Open. 2014; 4(2):e003968.
    • 16. Peters M, Crocker H, Dummett S, et al. Pilot Study of Patient Reported Outcome Measures (PROMs) in Primary Care. Oxford: University of Oxford; 2013.
    • 17. Mujica-Mota RE, Roberts M, Abel G, et al. Common patterns of morbidity and multi-morbidity and their impact on health-related quality of life: evidence from a national survey. Qual Life Res. 2015;24(4):909-918.
    • 18. Hunter C, Fitzpatrick R, Jenkinson C, et al. Perspectives from health, social care and policy stakeholders on the value of a single self-report outcome measure across long-term conditions: a qualitative study. BMJ Open. 2015;5(5):e006986.
    • 19. Murray CJL, Vos T, Lozano R, et al. Disability-adjusted life years (DALYs) for 291 diseases and injuries in 21 regions, 1990-2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet. 2012;380(9859):2197-2223.
    • 20. Lloyd H, Lloyd J, Fitzpatrick R, Peters M. Outcomes that matter to people with schizophrenia: an in-depth study. Submitted. 2015.
    • 21. UK Department of Health. The 2013/14 Adult Social Care Outcomes Framework. London: DH; 2012.
    • 22. UK Department of Health. The NHS Outcomes Framework 2014/15. London: DH; 2013.
    • 23. Ritchie J, Spencer L. Qualitative data analysis for applied policy research. In: Bryman A, Burgess R, editors. Analysing Qualitative Data. Abingdon, UK: Routledge; 1994.
    • 24. Kerr C, Nixon A, Wild D. Assessing and demonstrating data saturation in qualitative inquiry supporting patient-reported outcomes research. Expert Rev Pharmacoecon Outcomes Res. 2010;10(3): 269-281.
    • 25. Brod M, Tesler LE, Christensen TL. Qualitative research and content validity: developing best practices based on science and experience. Qual Life Res. 2009;18(9):1263-1278.
    • 26. Fitzpatrick R, Davey C, Buxton M, Jones D. Evaluating patient-based outcome measures for use in clinical trials. Health Technol Assess. 1998;2(14):1-74.
    • 27. Schuurmans H, Steverink N, Frieswijk N, Buunk BP, Slaets JP, Lindenberg S. How to measure self-management abilities in older people by self-report: the development of the SMAS-30. Qual Life Res. 2005;14(10):2215-2228.
    • 28. McAllister M, Dunn G, Payne K, Davies L, Todd C. Patient empowerment: the need to consider it as a measurable patient-reported outcome for chronic conditions. BMC Health Serv Res. 2012;12:157.
    • 29. Eton DT, Ridgeway JL, Egginton JS, et al. Finalizing a measurement framework for the burden of treatment in complex patients with chronic conditions. Patient Relat Outcome Meas. 2015;6: 117-126.
    • 30. Malley J, Towers AM, Netten A, Brazier J, Forder J, Flynn T. An assessment of the construct validity of the ASCOT measure of social carerelated quality of life with older people. Health Qual Life Outcomes. 2012;10:21.
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    The results below are discovered through our pilot algorithms. Let us know how we are doing!

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