Literature DB >> 31933005

An emerging framework for fully incorporating public involvement (PI) into patient-reported outcome measures (PROMs).

J Carlton1, T Peasgood2, S Khan2, R Barber2, J Bostock3,4,5, A D Keetharuth2.   

Abstract

Patient-reported outcome measures (PROMs) are widely used in the United Kingdom (UK) and internationally to report and monitor patients' subjective assessments of their symptoms and functional status and also their quality of life. Whilst the importance of involving the public in PROM development to increase the quality of the developed PROM has been highlighted this practice is not widespread. There is a lack of guidance on how public involvement (PI) could be embedded in the development of PROMs, where the roles can be more complex than in other types of research. This paper provides a timely review and sets out an emerging framework for fully incorporating PI into PROM development.

Entities:  

Keywords:  Patient and Public Involvement (PPI); Patient reported outcome measures (PROMs); Public involvement (PI); Questionnaire

Year:  2020        PMID： 31933005     DOI： 10.1186/s41687-019-0172-8

Source DB:  PubMed          Journal:  J Patient Rep Outcomes        ISSN： 2509-8020


  10 in total

1.  Patient-reported outcome measures in MS: Do development processes and patient involvement support valid quantification of clinically important variables?

Authors:  Trishna Bharadia; Jo Vandercappellen; Tanuja Chitnis; Piet Eelen; Birgit Bauer; Giampaolo Brichetto; Andrew Lloyd; Hollie Schmidt; Miriam King; Jennifer Fitzgerald; Thomas Hach; Jeremy Hobart
Journal:  Mult Scler J Exp Transl Clin       Date:  2022-06-22

2.  Overlap of Depressive Symptoms with Health-Related Quality-of-Life Measures.

Authors:  Ron D Hays; Peter M Fayers
Journal:  Pharmacoeconomics       Date:  2020-11-02       Impact factor: 4.558

3.  Creativity in public involvement: supporting authentic collaboration and inclusive research with seldom heard voices.

Authors:  Katherine Broomfield; Claire Craig; Sarah Smith; Georgina Jones; Simon Judge; Karen Sage
Journal:  Res Involv Engagem       Date:  2021-03-17

4.  The suitability of patient-reported outcome measures used to assess the impact of hypoglycaemia on quality of life in people with diabetes: a systematic review using COSMIN methods.

Authors:  Jill Carlton; Joanna Leaviss; Frans Pouwer; Christel Hendrieckx; Melanie M Broadley; Mark Clowes; Rory J McCrimmon; Simon R Heller; Jane Speight
Journal:  Diabetologia       Date:  2021-02-02       Impact factor: 10.122

5.  Measuring Duchenne muscular dystrophy impact: development of a proxy-reported measure derived from PROMIS item banks.

Authors:  Carolyn E Schwartz; Roland B Stark; David Cella; Katrina Borowiec; Katherine L Gooch; Ivana F Audhya
Journal:  Orphanet J Rare Dis       Date:  2021-11-22       Impact factor: 4.123

6.  The role of patient and public involvement and engagement (PPIE) within the development of the EQ Health and Wellbeing (EQ-HWB).

Authors:  Jill Carlton; Tessa Peasgood; Clara Mukuria; Julie Johnson; Margaret Ogden; Wade Tovey
Journal:  J Patient Rep Outcomes       Date:  2022-04-08

7.  Living with a left ventricular assist device: Capturing recipients experiences using group concept mapping software.

Authors:  Anita L Slade; Margaret E O'Hara; David Quinn; Laura Marley; Stephen Griffith; Melanie Calvert; M Sayeed Haque; Hoong Sern Lim; Philippa Doherty; Deirdre A Lane
Journal:  PLoS One       Date:  2022-09-21       Impact factor: 3.752

8.  An international collaborative study to co-produce a patient-reported outcome measure of cardiac arrest survivorship and health-related quality of life (CASHQoL): A protocol for developing the long-form measure.

Authors:  Kirstie L Haywood; Charlotte Southern; Elizabeth Tutton; Paul Swindell; David Ellard; Nathan A Pearson; Helen Parsons; Keith Couper; Katie N Daintyi; Sachin Agarwal; Gavin D Perkins
Journal:  Resusc Plus       Date:  2022-08-31

9.  The importance of children and young person involvement in scoping the need for a paediatric glucocorticoid-associated patient reported outcome measure.

Authors:  S Singhal; E M D Smith; L Roper; C E Pain
Journal:  BMC Rheumatol       Date:  2022-10-15

10.  Priority recommendations for the implementation of patient-reported outcomes in clinical cancer care: a Delphi study.

Authors:  C Mazariego; M Jefford; R J Chan; N Roberts; L Millar; A Anazodo; S Hayes; B Brown; C Saunders; K Webber; J Vardy; A Girgis; B Koczwara
Journal:  J Cancer Surviv       Date:  2022-02-02       Impact factor: 4.442
  10 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.