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Research priorities in pernicious anaemia: James Lind Alliance Priority Setting Partnership

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posted on 13.09.2022, 12:48 authored by Kristina Staley, Kourosh R. Ahmadi, Karyl Carter, Katherine Cowan, Catherine Heidi Seage, Petra Visser, Nicola Ward, Martyn Hooper

 

Objectives To form a James Lind Alliance (JLA) Priority Setting Partnership (PSP) to determine research priorities related to the cause, diagnosis, treatment and management of pernicious anaemia (PA) from the perspectives of patients, carers and clinicians.

Design The PSP conducted two surveys and a workshop to identify the Top 10 questions for research. A first survey identified questions relating to the cause, diagnosis, treatment and management of PA. A literature search checked whether any of these questions had already been answered. A second survey asked respondents to identify and rank their top 10 questions from the list of questions from the first survey. An online workshop used an adapted nominal group technique to agree a final Top 10.

Results In the first survey, 933 people submitted 3480 responses that were categorised and summarised to generate a long list of 40 questions. None had been answered by previous research. The combined rankings from the 1068 patients, carers and clinicians who took part in the second survey identified a short list of 16 questions. These were discussed at the final workshop to agree the final Top 10. The number one question was about an accurate and reliable diagnostic test for PA. The other nine questions were about making treatment safe and effective, understanding why people with PA vary in their need for treatment, links to other conditions, and how to encourage clinicians to take PA seriously and provide long-term care.

Conclusions This JLA PSP enabled patients, carers and clinicians to work together to agree the Top 10 uncertainties relating to the cause, diagnosis, management and treatment of PA. Addressing any of these questions will greatly benefit the end-users of research, the people whose daily lives and decisions will be directly affected by generating high quality research evidence.

History

Published in

BMJ Open

Publisher

BMJ

Version

VoR (Version of Record)

Citation

Staley, K., Ahmadi, K.R., Carter, K., Cowan, K., Seage, H., Visser, P., Ward, N. and Hooper, M. (2022) 'Research priorities in pernicious anaemia: James Lind Alliance Priority Setting Partnership', BMJ open, 12(8), p.e065166.

Electronic ISSN

2044-6055

Cardiff Met Affiliation

Cardiff School of Sport and Health Sciences

Cardiff Met Authors

Heidi Seage

Cardiff Met Research Centre/Group

  • Applied Psychology and Behaviour Change

Copyright Holder

© The Authors

Language

en

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