دورية أكاديمية
أعرض في EDS

Research priorities for autosomal dominant polycystic kidney disease: a UK priority setting partnership.

التفاصيل البيبلوغرافية
العنوان: Research priorities for autosomal dominant polycystic kidney disease: a UK priority setting partnership.
المؤلفون: Harris T; Polycystic Kidney Disease Charity, London, UK tess.harris@pkdcharity.org.uk., Bridges HR; HB Health Comms Ltd, Orpington, UK., Brown WD; London Kidney Network, London, UK., O'Brien NL; ADPKD patient representative, Reading, UK., Daly AC; Birmingham Women's and Children's Hospitals NHS Foundation Trust, Birmingham, UK., Jindal BK; Royal College of General Practitioners Yorkshire Faculty, Huddersfield, UK., Mundy GS; ADPKD Patient Representative, Newcastle, UK., Ong A; Academic Nephrology Unit, The Henry Wellcome Laboratories for Medical Research, University of Sheffield Medical School, Sheffield, UK.; University of Sheffield, Sheffield, UK., Power AJ; North Bristol NHS Trust, Bristol, UK., Sandford RN; Department of Medical Genetics, University of Cambridge, Cambridge, UK., Sayer J; University of Newcastle upon Tyne, Newcastle upon Tyne, UK., Simms RJ; Northern General, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK., Wilson PD; Department of Renal Medicine, Royal Free NHS Foundation Trust, University College London, London, UK., Winyard PJD; UCL Great Ormond Street Institute of Child Health, London, UK., Tarpey M; James Lind Alliance, Southampton, UK.
المصدر: BMJ open [BMJ Open] 2022 Jun 15; Vol. 12 (6), pp. e055780. Date of Electronic Publication: 2022 Jun 15.
نوع المنشور: Journal Article; Research Support, Non-U.S. Gov't
اللغة: English
بيانات الدورية: Publisher: BMJ Publishing Group Ltd Country of Publication: England NLM ID: 101552874 Publication Model: Electronic Cited Medium: Internet ISSN: 2044-6055 (Electronic) Linking ISSN: 20446055 NLM ISO Abbreviation: BMJ Open Subsets: MEDLINE
أسماء مطبوعة: Original Publication: [London] : BMJ Publishing Group Ltd, 2011-
مواضيع طبية MeSH: Biomedical Research* , Polycystic Kidney, Autosomal Dominant*/therapy, Caregivers ; Disease Progression ; Health Priorities ; Humans ; United Kingdom
مستخلص: Objectives: Autosomal dominant polycystic kidney disease (ADPKD) is the most common inherited kidney condition, accounting for 7%-10% of patients with kidney failure. Fundamental basic science and clinical research on ADPKD is underway worldwide but no one has yet considered which areas should be prioritised to maximise returns from limited future funding. The Polycystic Kidney Disease Charity began a priority setting partnership with the James Lind Alliance (JLA) in the UK in 2019-2020 to identify areas of uncertainty in the ADPKD care pathway and allow patients, carers and healthcare professionals to rank the 10 most important questions for research.
Design: The scope covered ADPKD diagnosis and management, identifying new treatments to prevent/slow disease progression and practical, integrated patient support (https://pkdcharity.org.uk/research/for-researchers/adpkd-research-priorities). We used adapted JLA methodology. Initially, an independent information specialist collated uncertainties in ADPKD care from recent consensus conference proceedings and additional literature. These were refined into indicative questions with Steering Group oversight. Finally, the 10 most important questions were established via a survey and online consensus workshop.
Setting: UK.
Participants: 747 survey respondents (76% patients, 13% carers, 11% healthcare professionals); 23 workshop attendees.
Results: 117 uncertainties in ADPKD care were identified and refined into 35 indicative questions. A shortlist of 17 questions was established through the survey. Workshop participants reached agreement on the top 10 ranking. The top three questions prioritised by patients, carers and healthcare professionals centred around slowing disease progression, identifying persons for early treatment and organising care to improve outcomes.
Conclusions: Our shortlist reflects the varied physical, psychological and practical challenges of living with and treating ADPKD, and perceived gaps in knowledge that impair optimal care. We propose that future ADPKD research funding takes these priorities into account to focus on the most important areas and to maximise improvements in ADPKD outcomes.
Competing Interests: Competing interests: None declared.
(© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
References: Am J Kidney Dis. 2020 Sep;76(3):361-373. (PMID: 32359822)
Kidney Int. 2015 Jul;88(1):17-27. (PMID: 25786098)
Lancet. 2015 May 16;385(9981):1993-2002. (PMID: 26090645)
Kidney Int. 2014 Dec;86(6):1244-52. (PMID: 24827775)
Cancer Nurs. 2019 Mar/Apr;42(2):89-90. (PMID: 30801364)
Nephrol Dial Transplant. 2017 Aug 01;32(8):1356-1363. (PMID: 27325254)
Am J Kidney Dis. 2014 Feb;63(2):214-26. (PMID: 24183837)
Lancet. 2019 Mar 2;393(10174):919-935. (PMID: 30819518)
Nephrology (Carlton). 2019 Dec;24(12):1214-1224. (PMID: 30663163)
Cochrane Database Syst Rev. 2015 Jul 14;(7):CD010294. (PMID: 26171904)
BMC Nephrol. 2013 Aug 27;14:179. (PMID: 23978051)
J Am Soc Nephrol. 2018 Oct;29(10):2593-2600. (PMID: 30135240)
Am J Kidney Dis. 2021 Feb;77(2):255-263. (PMID: 32771648)
Nephrol Dial Transplant. 2017 May 01;32(5):847-854. (PMID: 27190349)
فهرسة مساهمة: Keywords: hepatology; nephrology; pain management
تواريخ الأحداث: Date Created: 20220615 Date Completed: 20220617 Latest Revision: 20220716
رمز التحديث: 20240628
مُعرف محوري في PubMed: PMC9204016
DOI: 10.1136/bmjopen-2021-055780
PMID: 35705349
قاعدة البيانات: MEDLINE
الوصف
تدمد:2044-6055
DOI:10.1136/bmjopen-2021-055780