Person-centred health outcomes in the routine care for people with progressive pulmonary fibrosis: the COCOS-IPF project's European survey on healthcare professionals' views and practices.

Background: Idiopathic pulmonary fibrosis (IPF) and progressive pulmonary fibrosis (PPF) are interstitial lung diseases (ILD) that carry a high burden and mortality. IPF/PPF experts and patients call for standardized care, outcome harmonization and holistic management in these complex and devastating diseases, with a focus on person-centeredness. In this cross-sectional international survey study, we aimed to gather information on the person-centred health outcomes European healthcare professionals (HCPs) already use or deem important for use in routine care for IPF/PPF.

Identifying outcome domains to establish a core outcome set for progressive pulmonary fibrosis: a scoping review.

Introduction: People with idiopathic pulmonary fibrosis (IPF) and other forms of progressive pulmonary fibrosis (PPF) have a high symptom burden and a poor health-related quality of life (HRQoL). Despite efforts to offer specialised treatment, clinical care for these patients remains suboptimal and several nonmedical needs remain unaddressed. Developing a core outcome set (COS) can help to identify a minimum set of agreed-upon outcomes that should be measured and acted-upon in clinical care.

Electronically monitored medication adherence in idiopathic pulmonary fibrosis: prevalence, predictors and outcomes.

Medication adherence studies in idiopathic pulmonary fibrosis (IPF) are limited, use cross-sectional designs and report discontinuation rates. We prospectively investigated adherence to pirfenidone in IPF patients using electronic monitoring, which provides insights on whether and when the medication was taken on a day-by-day basis. We investigated the impact of nonadherence on lung function and selected predictors for nonadherence based on the COM-B behavioural model.

Behavioural and psychological patterns of patients with idiopathic pulmonary fibrosis: a prospective study.

Background: Idiopathic pulmonary fibrosis (IPF) is a chronic and progressive lung condition. Currently, care models predominantly focus on acute medical and pharmacological needs. As a step towards holistic care, the aim of this prospective study was to investigate the psychological and behavioural needs of IPF patients treated with pirfenidone from diagnosis until two years of follow-up.

Care programs and their components for patients with idiopathic pulmonary fibrosis: a systematic review.

Background: The multidimensional and complex care needs of patients with idiopathic pulmonary fibrosis (IPF) call for appropriate care models. This systematic review aimed to identify care models or components thereof that have been developed for patients with IPF in the outpatient clinical care, to describe their characteristics from the perspective of chronic integrated care and to describe their outcomes.

Methods: A systematic review was conducted using state-of-the-art methodology with searches in PubMed/Medline, Embase, CINAHL and Web Of Science.

Patients' and healthcare professionals' perspectives on the idiopathic pulmonary fibrosis care journey: a qualitative study.

Background: Idiopathic pulmonary fibrosis (IPF) highly impacts patients on several life dimensions and challenges healthcare practices in providing high-quality care. Consequently, it is crucial to establish integrated care processes, maximizing patient value and patients' individual needs. The aim of the study was to shed light on the care trajectory based on the perspectives of patients and healthcare professionals.