Division of Pulmonary and Critical Care medicine, Weill Cornell Medical College, New York, New York, USA.
The University of Alabama at Birmingham Heersink School of Medicine, Birmingham, Alabama, USA.
BMJ Open Respir Res. 2024 Oct 22;11(1):e002487. doi: 10.1136/bmjresp-2024-002487.
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.
This study used the nominal group technique, a semiquantitative and qualitative method to identify stakeholder priorities.
Virtual group sessions were conducted in an academic medical centre in the USA.
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.
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.
This study provides an understanding of patients' prioritisation of knowledge gaps in HP to inform targeted educational interventions and provide avenues for future research.
针对先前研究发现缺乏对疾病的了解会影响患者的生活质量，本研究旨在从患有疾病的患者角度确定和优先考虑关于过敏性肺炎 (HP) 的信息空白。
本研究使用名义群体技术，一种半定量和定性的方法来确定利益相关者的优先事项。
在美国的一家学术医疗中心进行了虚拟小组会议。
21 名被诊断患有 HP 的患者参加了这项研究。如果患者会说英语，并且能够上网，则符合参与条件；如果患者认知受损，则被排除在外。
患者陈述被分为七个主题，参与者按以下顺序对这些主题进行了优先排序：(1)自然病史和预后；(2)当前治疗选择和治疗研究；(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)识别和减轻暴露；(7)教育患者、临床医生和其他人员了解 HP 的方法。
本研究了解了患者对 HP 中知识空白的优先排序，以告知有针对性的教育干预措施，并为未来的研究提供途径。
