Gaps in care of patients living with pulmonary fibrosis: a joint patient and expert statement on the results of a Europe-wide survey.

Pulmonary fibrosis (PF) and its most common form, idiopathic pulmonary fibrosis (IPF), are chronic, progressive diseases resulting in increasing loss of lung function and impaired quality of life and survival. The aim of this joint expert and patient statement was to highlight the most pressing common unmet needs of patients with PF/IPF, putting forward recommendations to improve the quality of life and health outcomes throughout the patient journey. Two online surveys for patients and healthcare professionals (HCPs) were conducted by the European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF) in 14 European countries. The surveys were answered by 286 patients and 69 HCPs, including physicians and nurses. Delays in diagnosis and timely access to interstitial lung disease specialists and pharmacological treatment have been identified as important gaps in care. Additionally, patients and HCPs reported that a greater focus on symptom-centred management, adequate information, trial information and increasing awareness of PF/IPF is required. The surveys offer important insights into the current unmet needs of PF/IPF patients. Interventions at different points of the care pathway are needed to improve patient experience.

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Copyright ©ERS 2019.

Déclaration de conflit d'intérêts

Conflict of interest: C.C. Moor has nothing to disclose. Conflict of interest: M.S. Wijsenbeek reports grants and other fees paid to her institution by Hoffmann-La Roche and Boehringer Ingelheim, and other fees paid to her institution by Galapagos, outside the submitted work. Conflict of interest: E. Balestro has nothing to disclose. Conflict of interest: D. Biondini has nothing to disclose. Conflict of interest: B. Bondue reports grants and personal fees from Hoffmann-La Roche and Boehringer Ingelheim outside the submitted work. Conflict of interest: V. Cottin reports consultancy fees, lecture fees and travel expenses to medical meetings from Actelion and Boehringer Ingelheim, consultancy fees from Bayer/MSD, personal fees for membership of an adjudication committee from Gilead, consultancy fees and lectures fees from Novartis, consultancy fees, lecture fees, travel to medical meetings and a grant to his institution from Roche, speaker fees from Sanofi, personal fees for acting as the chair of a data and safety monitoring board (DSMB) from Promedior, personal fees for membership of DSMBs from Celgene and Galecto, and personal fees for consultancy and membership of a DSMB from Galapagos, outside the submitted work. Conflict of interest: R. Flewett has nothing to disclose. Conflict of interest: L. Galvin has nothing to disclose. Conflict of interest: S. Jones takes part in the annual Patient Advocacy Group meeting organised by Boehringer Ingelheim, who pay a nominal amount to Action for Pulmonary Fibrosis (APF). He organises some meetings with patients for which small honoraria are paid to APF by Boehringer Ingelheim. He has also arranged meetings for Galapagos, Roche, GSK and Vicore with patients, for which an honorarium was sometimes paid to APF. Conflict of interest: M. Molina-Molina reports grants and personal fees from Roche, Boehringer and Esteve-Teijin, grants from GSK, and personal fees from Pfizer, outside the submitted work. Conflict of interest: L. Planas-Cerezales has nothing to disclose. Conflict of interest: A. Prasse reports personal fees and nonfinancial support from Boehringer Ingelheim, Roche, AstraZeneca, Novartis, SanofiAventis and NittoDenko, and personal fees from AbbVie and Pliant, outside the submitted work. Conflict of interest: H. Prosch reports grants and personal fees from Boehringer Ingelheim, and personal fees from Roche, during the conduct of the study. Conflict of interest: A-M. Russell reports expenses and hospitality to attend scientific advisory board meetings from EU-IPFF, personal fees from ILFA, grants and nonfinancial support from Hoffmann-La Roche and nonfinancial support from Boehringer Ingelheim during the conduct of the study; and grants from Pulmonary Fibrosis Trust UK and nonfinancial support from the ILD Interdisciplinary Network outside the submitted work. Conflict of interest: M. Viegas has nothing to disclose. Conflict of interest: G. Wanke has nothing to disclose. Conflict of interest: W. Wuyts reports grants pay to his university by Roche and Boehringer Ingelheim outside the submitted work. Conflict of interest: M. Kreuter reports personal fees from Galapagos, and grants and personal fees from Roche and Boehringer Ingelheim, outside the submitted work. Conflict of interest: F. Bonella reports grants, personal fees and nonfinancial support from Boehringer Ingelheim, Roche and Savara Pharma, outside the submitted work.