M270 Obtaining Information When You Have A Rare Disease - The Potential For Ipf Support Groups

Abstract

Background The aim was to explore the ways in which patients with IPF obtain information about their condition. Methods Market research was conducted with an independent agency. Patients with IPF were asked to record a personal account of their experience on a hand-held camera. Face to face interviews with patients were conducted in their home. Carers were also interviewed to add an alternative perspective. Results The sample included 13 male and 3 female patients with IPF. Patients with lung function impairment of all severities were included, five patients were treated with oxygen therapy and another had received a lung transplant. Patients reported finding information from a variety of sources, including primary healthcare professionals, patient information leaflets, the internet, district nurses and support groups. Most valued sources of information were IPF physicians, nurse specialists and patient support groups. Gaps identified by patients were the need for high quality information including, 1) accurate and complete information about IPF, 2) clarity on the difficulty of predicting life expectancy, 3) how to access services and benefits, 4) how palliative care can help, 5) why support groups are beneficial, 6) how to modify lifestyle as capabilities change, 7) how to live and travel with oxygen and 8) how to explain oxygen to others. Conclusions Support groups are under-developed, with great potential to help patients and their carers. Support groups are well placed to provide advice for everyday living that the healthcare community may be unable to offer. There is also a need to improve the standard of written information currently available for patients with IPF.