LAUSR

Background: Studies have demonstrated that pulmonary hypertension (PH) impacts on quality of life, however, there is only limited data on its financial impact. Methods: A questionnaire looking at employment and income pre and post diagnosis of PH, expenses since diagnosis and effect of financial changes on wellbeing was developed by the PHA-UK. It was sent to members who had previously consented to be contacted for research. Results: 141 responses were received. Mean age was 60±15 years and age at diagnosis was 54±16. 65% were female. Prior to diagnosis 35% were employed full-time and 16% part-time, 31% were retired and 14% were unable to work. Of those working prior to diagnosis only 19% had continued working as before, 38% reported they had now given up work completely, 23% reduced their hours, 13% retired and 4% were on long-term absence due to ill health. Average patient monthly income was reduced by £212 (~240 €). 54% had tried to claim benefit support. Only 45% of claims were successful on first application. In addition to health-related travel costs, 80% of participants reported increased costs in areas such as household help and heating. Applying for life and travel insurance cover was difficult for many and 90% had to pay increased premiums. Overall, 60% have had difficulty paying bills and 16% had fallen into debt. Financial concerns had a negative impact on well-being in 52% of participants’ with 15% feeling the need to access counselling over their financial situation. Conclusion: This survey highlights the significant financial impact of PH. Measures to help patients manage the financial impact of this disease require further investigation.