| Title: | Lung fibrosis patients identify deficiencies in vital healthcare support services |
|---|---|
| Author(s): | N Cassidy L Fox L Brown L Galvin G O’Dowd D Sheahan K O’Reilly |
| Institution: | Irish Lung Fibrosis Association |
| Poster: | Click to view poster |
| Category: | ILD |
| Abstract: | Lung fibrosis patients identify deficiencies in vital healthcare support services. Cassidy N1, Fox L1,2, Brown L1,3, Galvin L1, Gemma O’Dowd1, Danny Sheahan4, O’Reilly KMA1,2,5. 1The Irish Lung Fibrosis Association, Dublin, Ireland, 2Mater Misericordiae University Hospital, Dublin, Ireland., 3St Vincent’s University Hospital, Dublin, Ireland. 4Invisio Ltd. Wicklow, Ireland 5School of Medicine, University College Dublin, Ireland. The Irish Lung Fibrosis Association (ILFA) conducted an online survey from 19 July-02 August 2021 to determine the healthcare support needs and experiences of lung fibrosis patients. Ninety-nine lung fibrosis and 13 post-transplant patients responded (53% male). 58% had a clinical nurse specialist (92% transplant recipients). 38% had been referred to a physiotherapist-led pulmonary rehabilitation programme, 25% to a dietitian and other services included social worker (9%), occupational therapist (8%), palliative care (6%), clinical psychologist (6%) and speech therapist (3%). Forty-five percent of patients had not been referred to any service. Post-transplant patients were more likely to be referred to a dietitian (69%), social worker (31%) and clinical psychologist (38%). For all services, most referrals happened more than 12-months after diagnosis. Patients’ felt they would have benefitted from referral to the following specialties at the time of diagnosis- physiotherapist-led pulmonary rehabilitation programme (65%), dietitian (51%), clinical psychologist (45%). Specialties of benefit to patients currently are physiotherapy (53%), clinical psychology (48%) and dietetics (47%). The following are seen as future needs -physiotherapy (85%), clinical psychology (67%), dietetics (67%), palliative care (65%) and occupational therapy (56%). This suggests that essential support services are lacking for lung fibrosis patients. |
