Literature DB >> 22428752

Patient and public involvement in patient-reported outcome measures: evolution not revolution.

Sophie Staniszewska1, Kirstie L Haywood, Jo Brett, Liz Tutton.   

Abstract

This paper considers the potential for collaborative patient and public involvement in the development, application, evaluation, and interpretation of patient-reported outcome measures (PROMs). The development of PROMs has followed a well trodden methodological path, with patients contributing as research subjects to the content of many PROMs. This paper argues that the development of PROMs should embrace more collaborative forms of patient and public involvement with patients as research partners in the research process, not just as those individuals who are consulted or as subjects, from whom data are sourced, to ensure the acceptability, relevance, and quality of research. We consider the potential for patients to be involved in a much wider range of methodological activities in PROM development working in partnership with researchers, which we hope will promote paradigmal evolution rather than revolution.

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Year:  2012        PMID: 22428752     DOI: 10.2165/11597150-000000000-00000

Source DB:  PubMed          Journal:  Patient        ISSN: 1178-1653            Impact factor:   3.883


  39 in total

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Review 5.  Patient perspective in outcome assessments--perceptions or something more?

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6.  Tacit models of disability underlying health status instruments.

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Journal:  Soc Sci Med       Date:  1993-07       Impact factor: 4.634

Review 7.  Impact of patient-reported outcome measures on routine practice: a structured review.

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Journal:  J Eval Clin Pract       Date:  2006-10       Impact factor: 2.431

8.  Patient-reported outcome measures: implications for nursing.

Authors:  Leela Barham; Nancy Devlin
Journal:  Nurs Stand       Date:  2011 Jan 5-11

9.  The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study.

Authors:  Lidwine B Mokkink; Caroline B Terwee; Donald L Patrick; Jordi Alonso; Paul W Stratford; Dirk L Knol; Lex M Bouter; Henrica C W de Vet
Journal:  Qual Life Res       Date:  2010-02-19       Impact factor: 4.147

10.  Patient-important outcomes in registered diabetes trials.

Authors:  Gunjan Y Gandhi; M Hassan Murad; Akira Fujiyoshi; Rebecca J Mullan; David N Flynn; Mohamed B Elamin; Brian A Swiglo; William L Isley; Gordon H Guyatt; Victor M Montori
Journal:  JAMA       Date:  2008-06-04       Impact factor: 56.272

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  64 in total

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Journal:  Qual Life Res       Date:  2014-01-04       Impact factor: 4.147

2.  Engaging older patients with cancer and their caregivers as partners in cancer research.

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Journal:  Cancer       Date:  2019-08-16       Impact factor: 6.860

Review 3.  Community-Academic Partnerships: A Systematic Review of the State of the Literature and Recommendations for Future Research.

Authors:  Amy Drahota; Rosemary D Meza; Brigitte Brikho; Meghan Naaf; Jasper A Estabillo; Emily D Gomez; Sarah F Vejnoska; Sarah Dufek; Aubyn C Stahmer; Gregory A Aarons
Journal:  Milbank Q       Date:  2016-03       Impact factor: 4.911

4.  Using PROMs in Healthcare: Who Should Be in the Driving Seat-Policy Makers, Health Professionals, Methodologists or Patients?

Authors:  Kirstie L Haywood; Roger Wilson; Sophie Staniszewska; Sam Salek
Journal:  Patient       Date:  2016-12       Impact factor: 3.883

5.  Patient and public involvement in developing patient-reported outcome measures: indispensable, desirable, challenging.

Authors:  Oliver Groene
Journal:  Patient       Date:  2012       Impact factor: 3.883

Review 6.  Patient-reported outcome measures in older people with hip fracture: a systematic review of quality and acceptability.

Authors:  K L Haywood; J Brett; E Tutton; S Staniszewska
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7.  Building new roles and relationships in research: a model of patient engagement research.

Authors:  Nancy Marlett; Svetlana Shklarov; Deborah Marshall; Maria Jose Santana; Tracy Wasylak
Journal:  Qual Life Res       Date:  2014-11-07       Impact factor: 4.147

8.  Patient involvement vs. patient participation in qualitative research in the development of PROMs.

Authors:  Steven J Blackburn
Journal:  Health Expect       Date:  2017-06       Impact factor: 3.377

9.  Acceptability of Patient-Reported Outcome and Experience Measures for Hepatitis C Treatment Among People Who Use Drugs.

Authors:  Annie Madden; Max Hopwood; Joanne Neale; Carla Treloar
Journal:  Patient       Date:  2019-04       Impact factor: 3.883

Review 10.  Do patients have a say? A narrative review of the development of patient-reported outcome measures used in elective procedures for coronary revascularisation.

Authors:  Geeske Peeters; Anna L Barker; Jason Talevski; Ilana Ackerman; Darshini R Ayton; Christopher Reid; Sue M Evans; Johannes U Stoelwinder; John J McNeil
Journal:  Qual Life Res       Date:  2018-01-29       Impact factor: 4.147

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