Physiotherapy, La Trobe University, Melbourne, Australia.
Allergy, Immunology and Respiratory Medicine, Monash University, Melbourne, Australia.
Eur Respir Rev. 2020 Apr 29;29(156). doi: 10.1183/16000617.0125-2019. Print 2020 Jun 30.
People with pulmonary fibrosis often experience a protracted time to diagnosis, high symptom burden and limited disease information. This review aimed to identify the supportive care needs reported by people with pulmonary fibrosis and their caregivers.
A systematic review was conducted according to PRISMA guidelines. Studies that investigated the supportive care needs of people with pulmonary fibrosis or their caregivers were included. Supportive care needs were extracted and mapped to eight pre-specified domains using a framework synthesis method.
A total of 35 studies were included. The most frequently reported needs were in the domain of information/education, including information on supplemental oxygen, disease progression and prognosis, pharmacological treatments and end-of-life planning. Psychosocial/emotional needs were also frequently reported, including management of anxiety, anger, sadness and fear. An additional domain of "access to care" was identified that had not been specified ; this included access to peer support, psychological support, specialist centres and support for families of people with pulmonary fibrosis.
People with pulmonary fibrosis report many unmet needs for supportive care, particularly related to insufficient information and lack of psychosocial support. These data can inform the development of comprehensive care models for people with pulmonary fibrosis and their loved ones.
肺纤维化患者通常需要较长时间才能确诊，且症状负担较重，疾病相关信息有限。本综述旨在确定肺纤维化患者及其照护者报告的支持性护理需求。
根据 PRISMA 指南进行系统综述。纳入了调查肺纤维化患者或其照护者支持性护理需求的研究。使用框架综合方法，从研究中提取支持性护理需求，并将其映射到八个预先指定的领域。
共纳入 35 项研究。报告最多的需求主要集中在信息/教育领域，包括补充氧气、疾病进展和预后、药物治疗和临终规划等方面的信息。心理社会/情绪需求也经常被报告，包括焦虑、愤怒、悲伤和恐惧的管理。还确定了一个未指定的“获得护理”领域，包括获得同伴支持、心理支持、专科中心以及肺纤维化患者家属的支持。
肺纤维化患者报告有许多支持性护理需求未得到满足，特别是与信息不足和缺乏心理社会支持有关。这些数据可以为肺纤维化患者及其家属的综合护理模式的制定提供信息。
