Research priorities for progressive pulmonary fibrosis in the UK.

IF 3.6 3区 医学 Q1 RESPIRATORY SYSTEM
Laura Fabbri, Anne-Marie Russell, Nazia Chaudhuri, Wendy Adams, Katherine Cowan, John Conway, Wendy Dickinson, Michael Gibbons, Simon Hart, Steve Jones, Jenny Lynch-Wilson, Tom McMillan, Steve Milward, Maureen Ward, Louise Elisabeth Wright, Gisli Jenkins
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引用次数: 0

Abstract

Introduction: Health research bodies recommend patient involvement and engagement in research and healthcare planning, although their implementation is not yet widespread. This deficiency extends to progressive pulmonary fibrosis (PPF), where crucial aspects remain unknown, including causal mechanisms, curative treatments and optimal symptom management. This study addresses these gaps by seeking stakeholders' perspectives to guide research and treatment directions.

Method: A priority-setting partnership was established to explore stakeholders' priorities in the diagnosis, treatment, management and care of PPF, including idiopathic pulmonary fibrosis which is the archetypal PPF. Stakeholders included people living with PPF, their carers, relatives and healthcare professionals involved in their management.

Results: Through an online open-ended survey, 2542 responses were collected from 638 stakeholders. Thematic analysis identified 48 specific research questions, which were then cross-referenced with academic literature to pinpoint research gaps. Following the evidence check, 44 unanswered questions were shortlisted by 834 stakeholders in a second online survey. Ultimately, a top 10 priority list was established through consensus.The prioritised research questions include (1) improved diagnosis accuracy and timing, (2) development of new treatments, (3) enhanced accuracy in primary care, (4) optimal timing for drug and non-drug interventions, (5) effective cough treatment, (6) early intervention for PPF, (7) improved survival rates, (8) symptom reduction, (9) impact of interventions on life expectancy and (10) new treatments with reduced side effects.

Conclusion: Stakeholders' priorities can be summarised into five areas: early diagnosis, drug and non-drug treatments, survival and symptom management. Ideally, these topics should guide funding bodies and health policies.

英国进行性肺纤维化的研究重点。
导言:健康研究机构建议患者参与研究和医疗保健规划,但这些建议尚未得到广泛实施。进行性肺纤维化(PPF)也存在这一缺陷,其关键方面仍不为人所知,包括病因机制、治疗方法和最佳症状管理。本研究通过寻求利益相关者的观点来指导研究和治疗方向,从而弥补这些不足:方法:建立了一个确定优先事项的合作伙伴关系,以探讨利益相关者在 PPF(包括作为 PPF 原型的特发性肺纤维化)的诊断、治疗、管理和护理方面的优先事项。利益相关者包括特发性肺纤维化患者、其照顾者、亲属以及参与其管理的医护人员:通过在线开放式调查,共收集到来自 638 位利益相关者的 2542 份回复。通过主题分析确定了 48 个具体的研究问题,然后将这些问题与学术文献进行交叉对比,找出研究空白点。在证据检查之后,834 位利益相关者在第二次在线调查中列出了 44 个未回答的问题。优先考虑的研究问题包括:(1) 提高诊断的准确性和及时性;(2) 开发新的治疗方法;(3) 提高初级保健的准确性;(4) 药物和非药物干预的最佳时机;(5) 有效的咳嗽治疗;(6) PPF 的早期干预;(7) 提高存活率;(8) 减少症状;(9) 干预措施对预期寿命的影响;(10) 减少副作用的新疗法:利益相关者的优先事项可归纳为五个方面:早期诊断、药物和非药物治疗、存活率和症状控制。理想情况下,这些主题应指导资助机构和卫生政策。
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来源期刊
BMJ Open Respiratory Research
BMJ Open Respiratory Research RESPIRATORY SYSTEM-
CiteScore
6.60
自引率
2.40%
发文量
95
审稿时长
12 weeks
期刊介绍: BMJ Open Respiratory Research is a peer-reviewed, open access journal publishing respiratory and critical care medicine. It is the sister journal to Thorax and co-owned by the British Thoracic Society and BMJ. The journal focuses on robustness of methodology and scientific rigour with less emphasis on novelty or perceived impact. BMJ Open Respiratory Research operates a rapid review process, with continuous publication online, ensuring timely, up-to-date research is available worldwide. The journal publishes review articles and all research study types: Basic science including laboratory based experiments and animal models, Pilot studies or proof of concept, Observational studies, Study protocols, Registries, Clinical trials from phase I to multicentre randomised clinical trials, Systematic reviews and meta-analyses.
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