Anouk Delameillieure1,2, Fabienne Dobbels3, Sarah Vandekerkhof2, Wim A Wuyts1,4. 1. Department of Chronic Diseases and Metabolism, Laboratory of Respiratory Diseases and Thoracic Surgery, KU Leuven, Leuven, Belgium. 2. Department of Public Health and Primary Care, Academic Centre for Nursing and Midwifery, KU Leuven, Kapucijnenvoer 35 blok D-box 7001, 3000, Leuven, Belgium. 3. Department of Public Health and Primary Care, Academic Centre for Nursing and Midwifery, KU Leuven, Kapucijnenvoer 35 blok D-box 7001, 3000, Leuven, Belgium. fabienne.dobbels@kuleuven.be. 4. Department of Respiratory Diseases, Unit for Interstitial Lung Diseases, University Hospitals Leuven, Leuven, Belgium.
Abstract
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. METHODS: The 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. RESULTS: Experiences 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. CONCLUSIONS: Our 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.
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. METHODS: The 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. RESULTS: Experiences 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. CONCLUSIONS: Our 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.
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Authors: Ganesh Raghu; Martine Remy-Jardin; Jeffrey L Myers; Luca Richeldi; Christopher J Ryerson; David J Lederer; Juergen Behr; Vincent Cottin; Sonye K Danoff; Ferran Morell; Kevin R Flaherty; Athol Wells; Fernando J Martinez; Arata Azuma; Thomas J Bice; Demosthenes Bouros; Kevin K Brown; Harold R Collard; Abhijit Duggal; Liam Galvin; Yoshikazu Inoue; R Gisli Jenkins; Takeshi Johkoh; Ella A Kazerooni; Masanori Kitaichi; Shandra L Knight; George Mansour; Andrew G Nicholson; Sudhakar N J Pipavath; Ivette Buendía-Roldán; Moisés Selman; William D Travis; Simon Walsh; Kevin C Wilson Journal: Am J Respir Crit Care Med Date: 2018-09-01 Impact factor: 21.405