Janani Varadarajan, Armani Edgar, Ronan O'Beirne, Tessy K Paul, Jamuna K Krishnan, Robert Kaner, Monika M Safford, Kerri Aronson
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引用次数: 0
Abstract
Objectives: Responding to prior research findings that lack of knowledge about their disease impacted patients' quality of life, the objective of this study was to identify and prioritise information gaps about hypersensitivity pneumonitis (HP) from the perspective of patients living with the disease.
Design: This study used the nominal group technique, a semiquantitative and qualitative method to identify stakeholder priorities.
Setting: Virtual group sessions were conducted in an academic medical centre in the USA.
Participants: 21 patients diagnosed with HP participated in this study. Participants were eligible if they spoke English and had access to the internet and were excluded if they had cognitive impairment.
Results: The patient statements were grouped into seven themes that were prioritised by participants in the following order: (1) natural history and prognosis; (2) current treatment options and therapeutic research; (3) epidemiology and aetiology of HP; (4) living well with HP; (5) origin and management of symptoms; (6) identifying and mitigating exposures and (7) methods of educating patients, clinicians and others about HP.
Conclusions: This study provides an understanding of patients' prioritisation of knowledge gaps in HP to inform targeted educational interventions and provide avenues for future research.
研究目的:以往的研究发现,缺乏对疾病的了解会影响患者的生活质量,针对这一情况,本研究旨在从超敏性肺炎(HP)患者的角度出发,确定有关该疾病的信息缺口,并对其进行优先排序:设计:本研究采用名义小组技术(一种半定量和定性的方法)来确定利益相关者的优先事项:虚拟小组会议在美国一家学术医疗中心举行。参与者:21 名确诊为 HP 的患者参与了本研究。如果患者有认知障碍,则排除在外:患者的陈述被归纳为七个主题,参与者按以下顺序排列这些主题:(1)自然病史和预后;(2)当前的治疗方案和治疗研究;(3)HP 的流行病学和病因;(4)HP 患者的良好生活;(5)症状的起源和管理;(6)识别和减少暴露;(7)对患者、临床医生和其他人进行 HP 教育的方法:本研究有助于了解患者对 HP 知识缺口的优先考虑,为有针对性的教育干预措施提供信息,并为未来研究提供途径。
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.