Developing a self-management package for pulmonary fibrosis: an international Delphi study

Abstract

Rationale Self-management is considered as an important part of disease management for people with pulmonary fibrosis (PF), but there is a lack of consensus regarding what components should be included. This study aimed to attain consensus from experts in PF and people living with the disease on the essential components and format of a PF self-management package. Methods A two-round Delphi process was conducted. In each round, a panel of experts completed an online survey to rate a range of components, formats and delivery methods, followed by an online patient focus group to integrate patient perspectives. Consensus was defined a priori. Results 45 experts participated in Round 1 and 51 in Round 2. Both focus groups included six people with PF. 12 components were considered essential for self-management in PF: 1) understanding treatment options; 2) understanding and accessing clinical trials; 3) managing medications; 4) role of oxygen therapy; 5) role and importance of pulmonary rehabilitation and regular physical activity; 6) managing shortness of breath; 7) managing fatigue; 8) managing mood; 9) managing comorbidities; 10) smoking cessation advice and support; 11) accessing community support; and 12) how to communicate with others when living with PF. Both groups agreed that self-management in PF required individualisation, goal setting and feedback. Conclusion This study identified 12 essential components and highlighted individualisation, goal setting and feedback in self-management of PF. The findings provide a basis for the development of PF self-management interventions.