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

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    Author
    Lee, JYT; Tikellis, G; Corte, TJ; Goh, NS; Keir, GJ; Spencer, L; Sandford, D; Khor, YH; Glaspole, I; Price, J; ...
    Date
    2020-06-30
    Source Title
    European Respiratory Review
    Publisher
    EUROPEAN RESPIRATORY SOC JOURNALS LTD
    University of Melbourne Author/s
    Khor, Yet Hong; Goh, Nicole Soo Leng; HOLLAND, ANNE ELIZABETH; HOLLAND, ANNE
    Affiliation
    Physiotherapy
    Medicine and Radiology
    Metadata
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    Document Type
    Journal Article
    Citations
    Lee, J. Y. T., Tikellis, G., Corte, T. J., Goh, N. S., Keir, G. J., Spencer, L., Sandford, D., Khor, Y. H., Glaspole, I., Price, J., Hey-Cunningham, A. J., Maloney, J., Teoh, A. K. Y., Watson, A. L. & Holland, A. E. (2020). The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review. EUROPEAN RESPIRATORY REVIEW, 29 (156), https://doi.org/10.1183/16000617.0125-2019.
    Access Status
    Open Access
    URI
    http://hdl.handle.net/11343/252143
    DOI
    10.1183/16000617.0125-2019
    Abstract
    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.

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