Living with pulmonary fibrosis: how affected people experience disease-related information, health services and self-management strategies

Abstract

Introduction: People with pulmonary fibrosis (PF) experience gaps in care, educational resources and self-management strategies throughout their journey. We sought to identify gaps in care and information, determine essential information, examine sources of information and assess preferred modes of delivery for patient education and self-management (PESM) resources and interventions.

Methods: In this qualitative study, we conducted interviews with people with PF using predefined, literature-based categories ("staying well with PF", "keeping fit & strong with PF", "using oxygen therapy", symptom management "breathlessness", "cough", "fatigue", "anxiety, depression and panic") and categories derived from own experience ("sources of information", "preferred modes of education delivery"). Interviews were analysed using deductive-inductive content analysis.

Results: We interviewed 11 individuals with PF (one woman), median age of 73 years (range 52-80) and time since diagnosis ranging from 1 to 10 years. Interviews lasted 40-70 min. A priori-defined saturation was reached for each predefined topic. Patients with PF relied on healthcare professionals (HCPs) as their primary information source. However, for sensitive topics such as life expectancy, death or when time with HCPs was limited, they often turned to internet searches with little success. There was a need for guidance on managing antifibrotic side effects, including adaptation of nutrition. While exercise was valued, it lacked structure, particularly at home. Self-management strategies for cough and fatigue remained insufficient. Digital resources were considered beneficial but maintaining in-person interactions with HCPs is essential.

Conclusion: This in-depth analysis highlights how people with PF comprehend patient education content and which taught or self-acquired self-management techniques they implement in their lives, including beliefs and concerns. These insights are essential for refining current and future PESM programmes and support the creation of blended learning and digital resources, with HCPs offering guidance on their use, to further support people with PF in self-management.

Keywords: Idiopathic Pulmonary Fibrosis; Interstitial Fibrosis.