Abstract
BackgroundIdiopathic 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.MethodsThe study was conducted at a tertiary Belgian IPF centre of excellence. We conducted individual interviews with patients and healthcare professionals, guided by the Chronic Care Model (CCM) as a framework for integrated care. Thematic analysis was used to underpin data analysis.ResultsExperiences were gathered of nine patients with IPF (aged 57–83 years, of which the informal caregivers were present at five interviews) and nine professionals involved in the IPF care trajectory. Our findings identified pitfalls and suggestions for improvement covering all elements of the CCM, primarily at the level of the individual patient and the care team. We covered suggestions to improve the team-based care and pro-active follow-up of patients’ needs. Self-management support was highlighted as an important area and we identified possibilities, but also challenges regarding the use of patient-reported outcomes and eHealth-tools. Furthermore, the importance of continuous training for professionals and the implementation of guidelines in routine care was pointed out. Also, participants mentioned an opportunity to collaborate with community-based organizations and raised challenges regarding the overall health system. Lastly, the pertaining lack of IPF awareness and the disease burden on patients and their caregivers were covered.ConclusionsOur research team has initiated a project aiming to optimize the current care delivery practice for IPF patients at a Belgian centre of excellence. These results will inform the further optimisation of the care program and the development of feasible supportive interventions.
Highlights
Idiopathic pulmonary fibrosis (IPF) highly impacts patients on several life dimensions and challenges healthcare practices in providing high-quality care
To strengthen the care processes, our research team has set up a project including a mixed-methods contextual analysis phase, aiming at assessing local practice patterns, identifying unmet care needs and discovering areas for improvement in the care trajectory of IPF patients at one of the three centres of excellence in Belgium [16]
Eligible patients were selected by a researcher (AD), who consulted a nurse specialized in Interstitial lung diseases (ILD) to check eligibility when needed
Summary
Idiopathic pulmonary fibrosis (IPF) highly impacts patients on several life dimensions and challenges healthcare practices in providing high-quality care. It is crucial to establish integrated care processes, maximizing patient value and patients’ individual needs. It is crucial to establish care processes that maximize patient value and meet the patients’ individual needs. This is highlighted in the European IPF charter, and the World Health Organization (WHO) advocates for integrated care [12,13,14,15]. The aim of this paper is to obtain a comprehensive understanding of the current IPF disease management program based on patients’ and healthcare professionals’ views
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