The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review.

Background: 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.
Methods: 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.
Results: 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 a priori ; this included access to peer support, psychological support, specialist centres and support for families of people with pulmonary fibrosis.
Conclusion: 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.
Competing Interests: Conflict of interest: J.Y.T. Lee has nothing to disclose. Conflict of interest: G. Tikellis has nothing to disclose. Conflict of interest: T.J. Corte reports grants and personal fees from Roche and Boehringer, and grants from Galapagos, Actelion and Sanofi, outside the submitted work. Conflict of interest: N.S. Goh has nothing to disclose. Conflict of interest: G.I. Keir has nothing to disclose. Conflict of interest: L. Spencer has nothing to disclose. Conflict of interest: D. Sandford has nothing to disclose. Conflict of interest: Y.H. Khor reports non-financial support from Air Liquide Healthcare, grants and personal fees from Boehringer Ingelheim, and personal fees from Roche, outside the submitted work. Conflict of interest: I. Glaspole reports personal fees from Boehringer Ingelheim, Roche, Menarini, Pulmotect and Avalyn, outside the submitted work. Conflict of interest: J. Price has nothing to disclose. Conflict of interest: A.J. Hey-Cunningham has nothing to disclose. Conflict of interest: J. Maloney reports unrestricted educational grants to her institution (Lung Foundation Australia) from Boehringer Ingelheim and Roche Australia, outside the submitted work. Conflict of interest: A.K. Teoh has nothing to disclose. Conflict of interest: A.L. Watson has nothing to disclose. Conflict of interest: A.E. Holland reports grants from National Health and Medical Research Council Australia, during the conduct of the study; and unrestricted research grants from Boehringer Ingelheim and Roche, outside the submitted work.
(Copyright ©ERS 2020.)