Development of a national patient charter for idiopathic pulmonary fibrosis

Abstract

Background: Idiopathic Pulmonary Fibrosis (IPF) is a progressive, debilitating and terminal interstitial lung disease. The Irish Lung Fibrosis Association (ILFA) was established to support those affected by IPF in Ireland. Aims: (1) to develop a national patient charter to increase awareness of IPF (2) inform patients of their entitlements for accessing optimal IPF treatment and support. Methods: In 2013 ILFA coordinated 5 focus group meetings with regional patient support groups. 23 patients and 10 carers shared their perspectives on IPF including treatment priorities and unmet needs. Thematic analysis was conducted. A further consultation process was conducted electronically and patient support groups, healthcare professionals and professional respiratory organisations invited to critically review a draft charter document. Results: Six key areas were identified and incorporated into a patient charter for IPF; diagnosis, communication and information, medication and oxygen, lung transplantation, pulmonary rehabilitation and exercise, and additional support services. Feedback on the draft document was received from respiratory consultants (n=2), patients/carers (n=3), healthcare professionals (n=3), pharma (n=1), the Irish Thoracic Society and the European Lung Foundation, and 3 support groups. Feedback was used to improve the charter. The Irish National Patient Charter for IPF was launched in October 2015 and circulated to ILFA members (circa 700) and is available online. Conclusion: This project successfully engaged patients, carers and healthcare professionals, and incorporated their treatment priorities into the development of a novel patient-centred resource; The National Patient Charter for IPF.