Marie Curie Palliative Care Research Centre, Cardiff University School of Medicine, Cardiff, UK.
BMJ Open. 2013 Aug 7;3(8):e003537. doi: 10.1136/bmjopen-2013-003537.
Idiopathic pulmonary fibrosis (IPF) is a progressive, life-threatening illness of unknown aetiology, with no proven pharmacological treatments. There is a limited evidence base indicating that the disease negatively affects quality of life, leading to increased dependence, restrictions on daily activities and fatigue. However, there is a paucity of in-depth information on disease impact across its trajectory, particularly in relation to unmet needs, outcomes of importance to patients and the experiences of carers. Furthermore, little is known about the support and information needs of individuals and their carers, or at what point individual need should trigger a referral to palliative care services.
A mixed-methods study is proposed recruiting individuals with IPF at different stages of the disease and their carers from three respiratory centres in England and Wales. In-depth interviews will be undertaken with participants, adopting an Interpretative Phenomenological Analysis approach. The study will also use validated questionnaires to explore quality of life (EQ-5D), depression (Hospital Anxiety and Depression Scale), breathlessness (Borg dyspnoea scale) and cough (Leicester Cough Questionnaire, Cough Symptom Score).
Ethical approvals were gained in April 2012. Palliative care research is a developing field, but there has been limited focus on IPF. We anticipate that the results of the study will enable healthcare professionals to provide appropriate palliative care across the trajectory for individuals with the disease, and their carers, and we therefore aim to disseminate via relevant respiratory and palliative care journals and conferences. We will also support the lay representative involved in the project to disseminate the findings to patient groups.
特发性肺纤维化（IPF）是一种病因不明的进行性、危及生命的疾病，目前尚无有效的药物治疗方法。有有限的证据表明，这种疾病会降低生活质量，导致依赖性增加、日常活动受限和疲劳。然而，关于疾病在整个病程中的影响，特别是关于未满足的需求、对患者重要的结果以及护理人员的经验，我们了解甚少。此外，我们对个人及其护理人员的支持和信息需求知之甚少，也不知道个人何时需要转介到姑息治疗服务。
拟从英格兰和威尔士的三个呼吸中心招募不同疾病阶段的 IPF 患者及其护理人员，进行一项混合方法研究。将采用解释性现象学分析方法对参与者进行深入访谈。该研究还将使用经过验证的问卷来评估生活质量（EQ-5D）、抑郁（医院焦虑和抑郁量表）、呼吸困难（Borg 呼吸困难量表）和咳嗽（莱斯特咳嗽问卷、咳嗽症状评分）。
伦理批准于 2012 年 4 月获得。姑息治疗研究是一个正在发展的领域，但对 IPF 的关注有限。我们预计，研究结果将使医疗保健专业人员能够在疾病的整个病程中为患者及其护理人员提供适当的姑息治疗，因此我们计划通过相关的呼吸和姑息治疗期刊和会议进行传播。我们还将支持参与该项目的非专业人员将研究结果传播给患者群体。
