University of Twente Student Theses
Exploring post-diagnostic patient pathways in rare diseases: leveraging data sources and practice-based insights for personalised care
Schrijver, J.G. (2025) Exploring post-diagnostic patient pathways in rare diseases: leveraging data sources and practice-based insights for personalised care.
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| Abstract: | This research explores how available data sources and practice-based insights can contribute to understanding and mapping post-diagnostic patient pathways in rare diseases, with the aim of supporting personalised care. A mixed-methods approach was used, combining qualitative interviews with an exploratory data framework analysis. Semi-structured interviews were conducted with patients, parents, and healthcare professionals. The interviews reveal that the post-diagnostic period for rare disease patients is often complex and fragmented. Respondents indicate challenges in the coordination of their care, communication, and a lack of awareness. Moreover, the respondents indicate an unclear role division of healthcare providers, wereby a single point of contact is often unclear or absent. The available psychosocial support also lacks the ability to meet the complex patient needs, negatively affecting their well-being. Mapping patient pathways requires data elements such as symptoms before and after diagnosis, treatment options, and follow-up support. The availability of these data elements varies within the Dutch data landscape, with much information not consistently recorded. Overall, the findings suggest the need for more integrated care for rare disease patients. Understanding and mapping post-diagnostic patient pathways in rare diseases requires the combination of various data sources and practice-based insights to support personalised care. |
| Item Type: | Essay (Master) |
| Faculty: | TNW: Science and Technology |
| Subject: | 44 medicine |
| Programme: | Health Sciences MSc (66851) |
| Link to this item: | https://purl.utwente.nl/essays/106714 |
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