Interventions to address supportive care needs of people with pulmonary fibrosis and/or their caregivers: A scoping review.

Abstract

Background: Pulmonary fibrosis is often accompanied by high levels of unmet supportive care needs that impact psycho-social well-being and overall quality of life for both the person with pulmonary fibrosis and their family. The provision of appropriate services to reduce unmet supportive care needs represents a key health care priority.

Aim: To provide the first broad-level overview of the available evidence of the characteristics and impact of interventions developed to address unmet supportive care needs in people with pulmonary fibrosis and/or their caregivers.

Design: Scoping review. The protocol was registered with Figshare.com (protocol number 25452100).

Data sources: Systematic electronic searches were performed in Cochrane Central, EMBASE, Medline, PsysINFO and CINAHL from inception to March 2024 to identify all studies describing interventions to address supportive care needs of people with pulmonary fibrosis and/or their carers.

Results: A total of 24 studies (1 abstract and 23 full text studies) met inclusion criteria. There was considerable heterogeneity in interventions described and outcome measures used. Multimodal interventions with a focus on symptom control, quality of life, peer support and psychosocial input appear to be crucial to integrated, effective and patient led supportive care. The generalisability of interventions is limited by small sample size, the use of inconsistent and/or non-validated evaluation measures and study attrition.

Conclusions: Further research with greater involvement of key stakeholders is urgently required. Future directions should also assess barriers to supportive care and investigate other avenues such as telehealth or remote delivery to improve access and acceptability.