Exploring network relations between healthcare access and utilisation in individuals with rare diseases
Background: Rare diseases affect fewer than one in 2000 people and impact approximately 400 million individuals globally. High costs, uncoordinated care, and inadequate provider knowledge pose challenges to rare disease care. We aimed to examine the relationship between healthcare access and utilisa...
Saved in:
| Main Authors: | , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Elsevier
2025-06-01
|
| Series: | Public Health in Practice |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S2666535225000126 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1850122837650571264 |
|---|---|
| author | Wehrli Susanne Dwyer Andrew A Matthias Baumgartner R Landolt Markus A |
| author_facet | Wehrli Susanne Dwyer Andrew A Matthias Baumgartner R Landolt Markus A |
| author_sort | Wehrli Susanne |
| collection | DOAJ |
| description | Background: Rare diseases affect fewer than one in 2000 people and impact approximately 400 million individuals globally. High costs, uncoordinated care, and inadequate provider knowledge pose challenges to rare disease care. We aimed to examine the relationship between healthcare access and utilisation among rare disease patients in Switzerland. Study design: A cross-sectional survey was conducted with 314 individuals with a rare disease. Methods: Participants completed the Perception of Access to Healthcare Questionnaire (PAHQ) and provided data on healthcare utilisation (institutional and provider levels). Network analysis assessed nodes were based on expected influence (EI), predictability, and bridge centrality (BC). Results: Four PAHQ subscales (acceptability, availability, adequacy, and awareness) exhibited higher EI and predictability. Conversely, accessibility and affordability of healthcare services had lower EI and predictability scores. In terms of healthcare utilisation, hospitals, private practices, general practictioners (GPs), mental health professionals, and emergency services demonstrated elevated EI and predictability. Specialists and holistic healthcare providers exhibited lower EI and predictability. Affordability, disease course, as well as hospital, and GP utilisation had elevated BC values and emerged as key connectors between access and utilisation. Conclusion: This study illuminates the intricate dynamics of healthcare experiences for patients with rare diseases. This work validates network analysis as a valuable tool for examining healthcare systems. Findings can inform policies that address challenges faced by this vulnerable population, namely care integration for individuals with an unstable disease course. |
| format | Article |
| id | doaj-art-1cec6d02e4154db3be3de6e455574fc7 |
| institution | OA Journals |
| issn | 2666-5352 |
| language | English |
| publishDate | 2025-06-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Public Health in Practice |
| spelling | doaj-art-1cec6d02e4154db3be3de6e455574fc72025-08-20T02:34:44ZengElsevierPublic Health in Practice2666-53522025-06-01910059310.1016/j.puhip.2025.100593Exploring network relations between healthcare access and utilisation in individuals with rare diseasesWehrli Susanne0Dwyer Andrew A1Matthias Baumgartner R2Landolt Markus A3Department of Psychosomatics and Psychiatry, University Children's Hospital, University of Zurich, Zurich, Switzerland; Division of Child and Adolescent Health Psychology, Department of Psychology, University of Zurich, Zurich, Switzerland; Children's Research Centre, University Children's Hospital Zurich, University of Zurich, Zurich, Switzerland; University Research Priority Program “ITINERARE –Innovative Therapies in Rare Diseases”, University of Zurich, Zurich, Switzerland; Corresponding author. Department of Psychosomatics and Psychiatry, University Children's Hospital, University of Zurich, Zurich, Switzerland.Boston College, William F. Connell School of Nursing, Chestnut Hill, MA, USA; P50 Massachusetts General Hospital – Harvard Center for Reproductive Medicine Boston, MA, USAChildren's Research Centre, University Children's Hospital Zurich, University of Zurich, Zurich, Switzerland; University Research Priority Program “ITINERARE –Innovative Therapies in Rare Diseases”, University of Zurich, Zurich, Switzerland; Division of Metabolism, University Children's Hospital Zurich, University of Zurich, Zurich, SwitzerlandDepartment of Psychosomatics and Psychiatry, University Children's Hospital, University of Zurich, Zurich, Switzerland; Division of Child and Adolescent Health Psychology, Department of Psychology, University of Zurich, Zurich, Switzerland; Children's Research Centre, University Children's Hospital Zurich, University of Zurich, Zurich, Switzerland; University Research Priority Program “ITINERARE –Innovative Therapies in Rare Diseases”, University of Zurich, Zurich, SwitzerlandBackground: Rare diseases affect fewer than one in 2000 people and impact approximately 400 million individuals globally. High costs, uncoordinated care, and inadequate provider knowledge pose challenges to rare disease care. We aimed to examine the relationship between healthcare access and utilisation among rare disease patients in Switzerland. Study design: A cross-sectional survey was conducted with 314 individuals with a rare disease. Methods: Participants completed the Perception of Access to Healthcare Questionnaire (PAHQ) and provided data on healthcare utilisation (institutional and provider levels). Network analysis assessed nodes were based on expected influence (EI), predictability, and bridge centrality (BC). Results: Four PAHQ subscales (acceptability, availability, adequacy, and awareness) exhibited higher EI and predictability. Conversely, accessibility and affordability of healthcare services had lower EI and predictability scores. In terms of healthcare utilisation, hospitals, private practices, general practictioners (GPs), mental health professionals, and emergency services demonstrated elevated EI and predictability. Specialists and holistic healthcare providers exhibited lower EI and predictability. Affordability, disease course, as well as hospital, and GP utilisation had elevated BC values and emerged as key connectors between access and utilisation. Conclusion: This study illuminates the intricate dynamics of healthcare experiences for patients with rare diseases. This work validates network analysis as a valuable tool for examining healthcare systems. Findings can inform policies that address challenges faced by this vulnerable population, namely care integration for individuals with an unstable disease course.http://www.sciencedirect.com/science/article/pii/S2666535225000126Rare diseaseHealthcare utilisationHealthcare accessChronic diseaseNetwork analysis |
| spellingShingle | Wehrli Susanne Dwyer Andrew A Matthias Baumgartner R Landolt Markus A Exploring network relations between healthcare access and utilisation in individuals with rare diseases Public Health in Practice Rare disease Healthcare utilisation Healthcare access Chronic disease Network analysis |
| title | Exploring network relations between healthcare access and utilisation in individuals with rare diseases |
| title_full | Exploring network relations between healthcare access and utilisation in individuals with rare diseases |
| title_fullStr | Exploring network relations between healthcare access and utilisation in individuals with rare diseases |
| title_full_unstemmed | Exploring network relations between healthcare access and utilisation in individuals with rare diseases |
| title_short | Exploring network relations between healthcare access and utilisation in individuals with rare diseases |
| title_sort | exploring network relations between healthcare access and utilisation in individuals with rare diseases |
| topic | Rare disease Healthcare utilisation Healthcare access Chronic disease Network analysis |
| url | http://www.sciencedirect.com/science/article/pii/S2666535225000126 |
| work_keys_str_mv | AT wehrlisusanne exploringnetworkrelationsbetweenhealthcareaccessandutilisationinindividualswithrarediseases AT dwyerandrewa exploringnetworkrelationsbetweenhealthcareaccessandutilisationinindividualswithrarediseases AT matthiasbaumgartnerr exploringnetworkrelationsbetweenhealthcareaccessandutilisationinindividualswithrarediseases AT landoltmarkusa exploringnetworkrelationsbetweenhealthcareaccessandutilisationinindividualswithrarediseases |