Patients’ and healthcare professionals’ perspectives on the idiopathic pulmonary fibrosis care journey: a qualitative study
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....
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| Format: | Article |
| Language: | English |
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BMC
2021-03-01
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| Series: | BMC Pulmonary Medicine |
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| Online Access: | https://doi.org/10.1186/s12890-021-01431-8 |
| _version_ | 1818616029661626368 |
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| author | Anouk Delameillieure Fabienne Dobbels Sarah Vandekerkhof Wim A. Wuyts |
| author_facet | Anouk Delameillieure Fabienne Dobbels Sarah Vandekerkhof Wim A. Wuyts |
| author_sort | Anouk Delameillieure |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-16T16:43:18Z |
| format | Article |
| id | doaj.art-1257769e4eb044a1bf02d1185201cf57 |
| institution | Directory Open Access Journal |
| issn | 1471-2466 |
| language | English |
| last_indexed | 2024-12-16T16:43:18Z |
| publishDate | 2021-03-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Pulmonary Medicine |
| spelling | doaj.art-1257769e4eb044a1bf02d1185201cf572022-12-21T22:24:14ZengBMCBMC Pulmonary Medicine1471-24662021-03-0121111410.1186/s12890-021-01431-8Patients’ and healthcare professionals’ perspectives on the idiopathic pulmonary fibrosis care journey: a qualitative studyAnouk Delameillieure0Fabienne Dobbels1Sarah Vandekerkhof2Wim A. Wuyts3Department of Chronic Diseases and Metabolism, Laboratory of Respiratory Diseases and Thoracic Surgery, KU LeuvenDepartment of Public Health and Primary Care, Academic Centre for Nursing and Midwifery, KU LeuvenDepartment of Public Health and Primary Care, Academic Centre for Nursing and Midwifery, KU LeuvenDepartment of Chronic Diseases and Metabolism, Laboratory of Respiratory Diseases and Thoracic Surgery, KU LeuvenAbstract 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.https://doi.org/10.1186/s12890-021-01431-8Idiopathic pulmonary fibrosisQuality improvementQualitative researchChronic Care Model |
| spellingShingle | Anouk Delameillieure Fabienne Dobbels Sarah Vandekerkhof Wim A. Wuyts Patients’ and healthcare professionals’ perspectives on the idiopathic pulmonary fibrosis care journey: a qualitative study BMC Pulmonary Medicine Idiopathic pulmonary fibrosis Quality improvement Qualitative research Chronic Care Model |
| title | Patients’ and healthcare professionals’ perspectives on the idiopathic pulmonary fibrosis care journey: a qualitative study |
| title_full | Patients’ and healthcare professionals’ perspectives on the idiopathic pulmonary fibrosis care journey: a qualitative study |
| title_fullStr | Patients’ and healthcare professionals’ perspectives on the idiopathic pulmonary fibrosis care journey: a qualitative study |
| title_full_unstemmed | Patients’ and healthcare professionals’ perspectives on the idiopathic pulmonary fibrosis care journey: a qualitative study |
| title_short | Patients’ and healthcare professionals’ perspectives on the idiopathic pulmonary fibrosis care journey: a qualitative study |
| title_sort | patients and healthcare professionals perspectives on the idiopathic pulmonary fibrosis care journey a qualitative study |
| topic | Idiopathic pulmonary fibrosis Quality improvement Qualitative research Chronic Care Model |
| url | https://doi.org/10.1186/s12890-021-01431-8 |
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