Patients’ experiences of coping with Idiopathic Pulmonary Fibrosis and their recommendations for its clinical management

BackgroundIdiopathic Pulmonary Fibrosis (IPF) is a chronic, progressive and life-limiting condition. From a healthcare perspective it is vital to establish effective methods of improving the quality of remaining life in these patients. This requires a detailed understanding of the multiple impacts of an IPF diagnosis on the individual.MethodsWe sought to understand how patients coped with their initial diagnosis, how they live with the disease day-to-day, and their experiences and opinions of the professional support they receive. A patient-centred approach was used to explore the social, psychological and physical impacts of IPF. Semi-structured interviews were conducted by an experienced academic. Interview questions were written by the researchers but guided by informal conversations with patients and clinicians. An inductive thematic approach was used to analyse the data, allowing us to identify common themes in the patients’ experiences.ResultsOf fifty invited participants, ten took part in the study (aged 53–81 years; 9 male). Inductive analysis of interviews identified seven second-order themes and eleven first-order themes, represented by two General Dimensions: ‘Patient experience with the condition’ and ‘Patient-led recommendations for practice’. The key message on ‘coping’ in these patients was that acceptance of their condition led to a sense of optimism. Participants reported using appraisal-focused coping strategies to change their perspectives (thinking positively) and emotion-focused strategies to overcome depression (the main opportunity for emotional expression being an IPF support group). The support group also facilitated problem-focused coping: individuals exchanged knowledge and experience and gave one another tips on how to live with their condition.ConclusionsHealth professionals should provide patients with information that focuses on living with IPF, encouraging them to make lifestyle changes and adaptations to improve quality of life. Family members should receive education about IPF so that they can support such changes. Patients should be encouraged to join a support group and to participate in physical activity (again preferably group-based). This study offers novel findings that will help inform much-needed changes in the practice of supporting IPF patients to cope with their diagnosis and disease progression.背景：特发性肺纤维化（Idiopathic Pulmonary Fibrosis, IPF）是一种慢性、进行性且可限制生命的疾病。从医疗卫生视角出发，建立有效方法以改善此类患者的剩余生命质量至关重要。这需要深入了解IPF诊断对患者个体产生的多方面影响。 方法：本研究旨在探究患者如何应对初次诊断、如何日常带病生活，以及他们对所获得的专业支持的体验与看法。研究采用以患者为中心的方法，探讨IPF带来的社会、心理及生理影响。由一名经验丰富的学者开展半结构化访谈，访谈问题由研究人员拟定，但参考了与患者及临床医生的非正式谈话内容。数据分析采用归纳式主题分析法，以此识别患者体验中的共同主题。 结果：在受邀的50名参与者中，共有10人参与本研究（年龄53~81岁；男性9人）。对访谈内容的归纳分析共识别出7个二级主题与11个一级主题，可归纳为两个核心维度：“患者疾病体验”与“患者主导的临床实践建议”。此类患者“应对”方式的核心结论为：接受自身病情可带来乐观心态。参与者报告称，他们采用评估导向的应对策略以改变自身视角（即积极思考），并采用情绪导向的策略以克服抑郁情绪——此类情绪表达的主要途径为IPF互助小组。互助小组同时助力问题导向的应对：患者间交流知识与经验，互相分享带病生活的实用技巧。 结论：医疗卫生专业人员应为患者提供聚焦于IPF带病生活的相关信息，鼓励患者做出生活方式调整与适应，以提升生命质量。应向家属开展IPF相关教育，使其能够为患者的此类调整提供支持。应鼓励患者加入互助小组并参与体育活动（优选团体形式）。本研究的发现具有创新性，将为改善IPF患者应对诊断与疾病进展的临床支持实践提供亟需的参考依据。