Understanding the patient's experience of care in idiopathic pulmonary fibrosis.

Abstract

New treatments for idiopathic pulmonary fibrosis (IPF) have improved survival; however, the complexity of care may be difficult for patients. The aim of this study was to assess the patient experience of modern IPF care. A qualitative study was undertaken for 100 people with IPF with a range of disease severity (forced vital capacity range: 46-106% predicted). Participants were asked about their experience of care using semi-structured interviews. Two investigators independently undertook analysis using the principles of grounded theory. Participants reported dissatisfaction with information received about IPF, particularly at the time of diagnosis. Most were enthusiastic about the benefits of specialist IPF centres including regular monitoring, frequent contact with health professionals and access to clinical trials. However, the burden of travel to specialist centres and costs of treatment were significant. Many reported that side effects of anti-fibrotics caused them to titrate or pause therapy, sometimes without consulting their treating team. Co-morbid medical conditions had a negative impact on well-being and highlighted poor coordination of care. Participants perceived a responsibility for self-management that included exercise, diet, vaccination and treatment of chest infections; many felt this active role should receive more positive emphasis from health professionals. These data show opportunities to improve modern IPF care including accurate and timely provision of information, improving access to specialist care, more support for managing treatment side effects and better coordination of care for patients with co-morbid conditions. Future research should explore the impact of self-management strategies on IPF outcomes.