Abstract

Introduction The Irish Lung Fibrosis Association (ILFA) was established in 2002 to support patients with pulmonary fibrosis (PF) and their families in Ireland. Aims This online survey aimed to assess the impact of PF on patients and carers across a range of domains. Methods The survey was distributed to ILFA members. Respondents who were a PF patient, a post-lung transplant patient (after prior PF), carer/family member of a patient were eligible. Responses between 5-21 July 2022 were analysed. Questions on physical symptoms, activities of daily living, emotional & financial aspects, oxygen supply & energy costs were included. Results Median response time for completion: 7.1 minutes. Data from 102 patients (current PF: 89; post-transplant: 13) & 53 carers/family members. Patient demographics: M/F: 52%/48%; age ?61 years: 78%; on oxygen: 69%. Carer demographics: M/F: 6%/94%; age ?61 years: 36%. Patient employment: 12% full-time work, 22% unable to work due to illness, 52% retired. Carer employment: 40% full-time work, 2% unable to work due to illness, 17% retired. Patient-reported physical symptoms were as expected for PF with some also reported by carers (e.g. fatigue, sleep disturbance). Patients & carers reported emotional (e.g. concern for family, anxiety) and financial worries (on heating/electricity costs, financial impact of PF on family, health insurance/medication/oxygen costs).  Conclusions The online survey did not impose a significant time burden on respondents. In addition to physical and emotional impacts, significant concerns about financial impact of PF were common in patients and carers. These may have been more pronounced because of increased energy prices in 2022.