TY - JOUR T1 - Developing a self-management package for pulmonary fibrosis: An international Delphi study JF - ERJ Open Research JO - erjor DO - 10.1183/23120541.00349-2022 SP - 00349-2022 AU - Joanna Y. T. Lee AU - Gabriella Tikellis AU - Yet H. Khor AU - Anne E. Holland Y1 - 2022/01/01 UR - http://openres.ersjournals.com/content/early/2022/10/06/23120541.00349-2022.abstract N2 - 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 2-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 Forty-five experts participated in round one and 51 in round two. Both focus groups included six people with PF. Twelve 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; 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.FootnotesThis manuscript has recently been accepted for publication in the ERJ Open Research. It is published here in its accepted form prior to copyediting and typesetting by our production team. After these production processes are complete and the authors have approved the resulting proofs, the article will move to the latest issue of the ERJOR online. Please open or download the PDF to view this article.Conflict of interest: Joanna Y. T. Lee have no relevant conflict of interests to disclose.Conflict of interest: Gabriella Tikellis have no relevant conflict of interests to disclose.Conflict of interest: Yet H. Khor reports fellowship support from NHMRC Investigator Grant, and grants from Boehringer Ingelheim, during the conduct of the study.Conflict of interest: Anne E. Holland have no relevant conflict of interests to disclose. ER -