Joanna Y T Lee1,2,3, Gabriella Tikellis1,2,3, Tamera J Corte3,4,5, Nicole S Goh6,7,8, Gregory J Keir9, Lissa Spencer4,10, Debra Sandford11,12, Yet H Khor6,7,8,13, Ian Glaspole2,3,8, John Price14, Alison J Hey-Cunningham3,4, Jamie Maloney15, Alan K Y Teoh3,4,5, Alice L Watson1, Anne E Holland16,2,3,7,8. 1. Physiotherapy, La Trobe University, Melbourne, Australia. 2. Allergy, Immunology and Respiratory Medicine, Monash University, Melbourne, Australia. 3. NHMRC Centre of Research Excellence in Pulmonary Fibrosis, Sydney, Australia. 4. The University of Sydney, Sydney, Australia. 5. Respiratory Medicine, Royal Prince Alfred Hospital, Camperdown, Australia. 6. Austin Health, Heidelberg, Australia. 7. Institute for Breathing and Sleep, Melbourne, Australia. 8. Alfred Health, Melbourne, Australia. 9. Princess Alexandra Hospital, Woolloongabba, Australia. 10. Royal Prince Alfred Hospital, Camperdown, Australia. 11. Royal Adelaide Hospital, Adelaide, Australia. 12. The University of Adelaide, Adelaide, Australia. 13. University of Melbourne, Melbourne, Australia. 14. Institute for Respiratory Health, Nedlands, Australia. 15. Lung Foundation Australia, Brisbane, Australia. 16. Physiotherapy, La Trobe University, Melbourne, Australia a.holland@alfred.org.au.
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.
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.