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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
  1. Cheryl Hunter1,
  2. Ray Fitzpatrick2,
  3. Crispin Jenkinson2,
  4. Anne-Sophie Emma Darlington3,
  5. Angela Coulter2,
  6. Julien E Forder4,5,
  7. Michele Peters2
  1. 1Academic Unit of Primary Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, England
  2. 2Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford, England
  3. 3Faculty of Health Sciences, University of Southampton, Southampton, England
  4. 4PSSRU, University of Kent, Canterbury, England
  5. 5PSSRU, London School of Economics and Political Science, London, England
  1. Correspondence to Dr Cheryl Hunter; c.a.hunter{at}leeds.ac.uk

Abstract

Objectives To explore the views of a range of stakeholders regarding whether patient-reported outcome measures (PROMs) can be developed to measure key attributes of long-term conditions (LTCs) care in England, and the potential value of a single generic measure.

Design Qualitative semistructured interview study, analysed using a framework approach.

Participants and setting Interviews with 31 stakeholders from primary care, secondary care, social care, policy and patient-focused voluntary organisations in England.

Results There was broad support for a single PROM that could be used to measure outcomes for patients with any LTCs in any health or social care setting. Interviewees identified three desired uses for a PROM: to improve the quality of individual care; to increase people's engagement in their own care; and to monitor the performance of services. Interviewees felt that a PROM for LTCs should incorporate a mixture of traditional and non-traditional domains, such as functioning, empowerment and social participation, and be codesigned with patients and professional end-users. Stakeholders emphasised the need for a PROM to be feasible for practical implementation at the individual clinical level as a first priority. A number of concerns and potential problems were identified in relation to the application and interpretation of an LTC PROM.

Conclusions This study has demonstrated support for a single self-report outcome measure that reflects the priorities of people with LTCs, if such a measure can be shown to be meaningful and useful at the individual level. People with LTCs and professional end-users in health and social care should be involved in the development and evaluation of such a measure.

  • PRIMARY CARE
  • QUALITATIVE RESEARCH

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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