Masefield Sarah, Cassidy Nicola, Ross Derek, Powell Pippa, Wells Athol
European Lung Foundation, Sheffield, UK.
Irish Lung Fibrosis Association, Dublin, Ireland.
ERJ Open Res. 2019 Jun 4;5(2). doi: 10.1183/23120541.00055-2019. eCollection 2019 Apr.
This paper explores commonalities in the experience and unmet needs of idiopathic pulmonary fibrosis (IPF) patients and carers in Europe throughout the care pathway, focusing specifically on the unmet communication needs of patients and carers. Four patient organisations/groups in Europe held focus groups (Italy (seven patients and four carers); Belgium (six patients); Ireland (23 patients and 10 carers); and England, UK (five patients and three carers)). A focus group schedule was provided and translated into the language of each focus group by the European Lung Foundation (ELF). Content analysis was conducted by the ELF and verified by the authors of the paper. Three main themes emerged: professional-patient, professional-professional and patient-patient communication. Within these themes, eight priority areas were highlighted by two or more of the focus groups. In addition, 17 suggested action points were identified. Patients and carers in Europe have unmet communication needs, which could be met by specialist physicians and specialist centres providing more effective information and signposting to support services, including support groups and patient organisations.
本文探讨了欧洲特发性肺纤维化（IPF）患者及其护理人员在整个护理过程中的经历和未满足需求的共性，特别关注患者和护理人员未满足的沟通需求。欧洲的四个患者组织/团体举办了焦点小组讨论（意大利（7名患者和4名护理人员）；比利时（6名患者）；爱尔兰（23名患者和10名护理人员）；以及英国英格兰（5名患者和3名护理人员））。欧洲肺部基金会（ELF）提供了焦点小组讨论日程安排，并将其翻译成每个焦点小组的语言。ELF进行了内容分析，并由本文作者进行了核实。出现了三个主要主题：专业人员与患者、专业人员与专业人员以及患者与患者之间的沟通。在这些主题中，两个或更多焦点小组突出了八个优先领域。此外，还确定了17个建议的行动要点。欧洲的患者和护理人员存在未满足的沟通需求，专科医生和专科中心可以通过提供更有效的信息并为支持服务（包括支持小组和患者组织）提供指引来满足这些需求。
