Patients’ experiences of coping with Idiopathic Pulmonary Fibrosis and their recommendations for its clinical management

BACKGROUND: Idiopathic Pulmonary Fibrosis (IPF) is a chronic, progressive and life-limiting condition. From a healthcare perspective it is vital to establish effective methods of improving the quality of remaining life in these patients. This requires a detailed understanding of the multiple impacts of an IPF diagnosis on the individual. METHODS: We sought to understand how patients coped with their initial diagnosis, how they live with the disease day-to-day, and their experiences and opinions of the professional support they receive. A patient-centred approach was used to explore the social, psychological and physical impacts of IPF. Semi-structured interviews were conducted by an experienced academic. Interview questions were written by the researchers but guided by informal conversations with patients and clinicians. An inductive thematic approach was used to analyse the data, allowing us to identify common themes in the patients’ experiences. RESULTS: Of fifty invited participants, ten took part in the study (aged 53–81 years; 9 male). Inductive analysis of interviews identified seven second-order themes and eleven first-order themes, represented by two General Dimensions: ‘Patient experience with the condition’ and ‘Patient-led recommendations for practice’. The key message on ‘coping’ in these patients was that acceptance of their condition led to a sense of optimism. Participants reported using appraisal-focused coping strategies to change their perspectives (thinking positively) and emotion-focused strategies to overcome depression (the main opportunity for emotional expression being an IPF support group). The support group also facilitated problem-focused coping: individuals exchanged knowledge and experience and gave one another tips on how to live with their condition. CONCLUSIONS: Health professionals should provide patients with information that focuses on living with IPF, encouraging them to make lifestyle changes and adaptations to improve quality of life. Family members should receive education about IPF so that they can support such changes. Patients should be encouraged to join a support group and to participate in physical activity (again preferably group-based). This study offers novel findings that will help inform much-needed changes in the practice of supporting IPF patients to cope with their diagnosis and disease progression.