Identifying the top research priorities in medically not yet explained symptoms (MNYES): a James Lind Alliance priority setting partnership

Objectives This study establishes research priorities for medically not yet explained symptoms (MNYES), also known as persistent physical symptoms or medically unexplained symptoms, from the perspective of patients, caregivers and clinicians, in a priority setting partnership (PSP) following the Jam...

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Main Authors: Mark Edwards, Danielle Varley, Natalie Smith, Petros Perros, Jonathan Gower, Arvind Kaul, Nicholas Gall, Andrew Stephen Moriarty, Christina Maria van der Feltz-Cornelis, Jennifer Sweetman, Jennifer Gilligan, Stephanie Hayle, James Sampford, Iman Elfeddali
Format: Article
Language:English
Published: BMJ Publishing Group 2022-07-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/12/7/e061263.full
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author Mark Edwards
Danielle Varley
Natalie Smith
Petros Perros
Jonathan Gower
Arvind Kaul
Nicholas Gall
Andrew Stephen Moriarty
Christina Maria van der Feltz-Cornelis
Jennifer Sweetman
Jennifer Gilligan
Stephanie Hayle
James Sampford
Iman Elfeddali
author_facet Mark Edwards
Danielle Varley
Natalie Smith
Petros Perros
Jonathan Gower
Arvind Kaul
Nicholas Gall
Andrew Stephen Moriarty
Christina Maria van der Feltz-Cornelis
Jennifer Sweetman
Jennifer Gilligan
Stephanie Hayle
James Sampford
Iman Elfeddali
author_sort Mark Edwards
collection DOAJ
description Objectives This study establishes research priorities for medically not yet explained symptoms (MNYES), also known as persistent physical symptoms or medically unexplained symptoms, from the perspective of patients, caregivers and clinicians, in a priority setting partnership (PSP) following the James Lind Alliance (JLA) approach. Research into such symptoms in general has been poorly funded over the years and so far has been primarily researcher-led with minimal input from patients, caregivers and clinicians; and sometimes has been controversial.Design JLA PSP method. The PSP termed these symptoms MNYES.Methods The study was conducted according to the JLA’s detailed methodology for conducting priority setting exercises. It involved five key stages: defining the appropriate term for the conditions under study by the PSP Steering Group; gathering questions on MNYES from patients, caregivers and clinicians in a publicly accessible survey; checking these research questions against existing evidence; interim prioritisation in a second survey; and a final multi-stakeholder consensus meeting to determine the top 10 unanswered research questions using the modified nominal group methodology.Results Over 700 responses from UK patients, caregivers and clinicians were identified in the two surveys and charities contributed from a broad range of medical specialties and primary care. The final top 10 unanswered research questions cover, among others: treatment strategies, personalisation of treatment, collaborative care pathways, training for clinicians and outcomes that matter to patients.Interpretation The top 10 unanswered research questions are expected to generate much needed, relevant and impactful research into MNYES.
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spelling doaj-art-133a5df8c018490489fdeb7722c6f6ac2025-01-30T21:45:08ZengBMJ Publishing GroupBMJ Open2044-60552022-07-0112710.1136/bmjopen-2022-061263Identifying the top research priorities in medically not yet explained symptoms (MNYES): a James Lind Alliance priority setting partnershipMark Edwards0Danielle Varley1Natalie Smith2Petros Perros3Jonathan Gower4Arvind Kaul5Nicholas Gall6Andrew Stephen Moriarty7Christina Maria van der Feltz-Cornelis8Jennifer Sweetman9Jennifer Gilligan10Stephanie Hayle11James Sampford12Iman Elfeddali13Department of Anaesthesia, University Hospital Southampton NHS Foundation Trust, Southampton, UKDepartment of Health Sciences, University of York, York, UKDepartment of Health Sciences, University of York, York, UKDepartment of Endocrinology, Royal Victoria Infirmary, Newcastle upon Tyne, UKJames Lind Alliance, Southampton, UKSt George’s University of London, London, UKDepartment of Neurocardiology, King’s College Hospital NHS Foundation Trust, London, UKDepartment of Health Sciences, University of York, York, UKDepartment of Health Sciences, University of York, York, UKDepartment of Health Sciences, University of York, York, UKLiaison team, Tees Esk and Wear Valleys Foundation Trust, York, UKPatient Representative, North Yorkshire, UKLiaison team, Tees Esk and Wear Valleys Foundation Trust, York, UKTranzo Department, Tilburg University, Tilburg, NetherlandsObjectives This study establishes research priorities for medically not yet explained symptoms (MNYES), also known as persistent physical symptoms or medically unexplained symptoms, from the perspective of patients, caregivers and clinicians, in a priority setting partnership (PSP) following the James Lind Alliance (JLA) approach. Research into such symptoms in general has been poorly funded over the years and so far has been primarily researcher-led with minimal input from patients, caregivers and clinicians; and sometimes has been controversial.Design JLA PSP method. The PSP termed these symptoms MNYES.Methods The study was conducted according to the JLA’s detailed methodology for conducting priority setting exercises. It involved five key stages: defining the appropriate term for the conditions under study by the PSP Steering Group; gathering questions on MNYES from patients, caregivers and clinicians in a publicly accessible survey; checking these research questions against existing evidence; interim prioritisation in a second survey; and a final multi-stakeholder consensus meeting to determine the top 10 unanswered research questions using the modified nominal group methodology.Results Over 700 responses from UK patients, caregivers and clinicians were identified in the two surveys and charities contributed from a broad range of medical specialties and primary care. The final top 10 unanswered research questions cover, among others: treatment strategies, personalisation of treatment, collaborative care pathways, training for clinicians and outcomes that matter to patients.Interpretation The top 10 unanswered research questions are expected to generate much needed, relevant and impactful research into MNYES.https://bmjopen.bmj.com/content/12/7/e061263.full
spellingShingle Mark Edwards
Danielle Varley
Natalie Smith
Petros Perros
Jonathan Gower
Arvind Kaul
Nicholas Gall
Andrew Stephen Moriarty
Christina Maria van der Feltz-Cornelis
Jennifer Sweetman
Jennifer Gilligan
Stephanie Hayle
James Sampford
Iman Elfeddali
Identifying the top research priorities in medically not yet explained symptoms (MNYES): a James Lind Alliance priority setting partnership
BMJ Open
title Identifying the top research priorities in medically not yet explained symptoms (MNYES): a James Lind Alliance priority setting partnership
title_full Identifying the top research priorities in medically not yet explained symptoms (MNYES): a James Lind Alliance priority setting partnership
title_fullStr Identifying the top research priorities in medically not yet explained symptoms (MNYES): a James Lind Alliance priority setting partnership
title_full_unstemmed Identifying the top research priorities in medically not yet explained symptoms (MNYES): a James Lind Alliance priority setting partnership
title_short Identifying the top research priorities in medically not yet explained symptoms (MNYES): a James Lind Alliance priority setting partnership
title_sort identifying the top research priorities in medically not yet explained symptoms mnyes a james lind alliance priority setting partnership
url https://bmjopen.bmj.com/content/12/7/e061263.full
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