Bridging the Knowledge Gap: Improving the Information Provision for Hemophilia Patients

Bridging the Knowledge Gap: Improving the Information Provision for Hemophilia Patients

Eekelaar, Tjaisha (TU Delft Industrial Design Engineering)

Albayrak, A. (graduation committee)
Dehli, S.R. (graduation committee)
Mussert, C.M.A. (mentor)
van Hoorn, E.S. (mentor)

Delft University of Technology

Strategic Product Design

2023-09-06

Hemophilia, a bleeding disorder, is divided into types A and B, resulting from coagulation factors VIII and IX deficiencies. The levels of these clotting factors in the body determine the severity of hemophilia. The classification includes severe, moderate, and mild hemophilia. Managing hemophilia involves options like on-demand and prophylactic treatment. A key part of managing this condition involves Hemophilia Treatment Centers (HTCs) as the primary healthcare providers for patients.

The HTC at Erasmus MC is one of the six centers in the Netherlands. It offers comprehensive care for adults and children with hemophilia and other rare bleeding disorders. In the pediatric department of Erasmus MC's HTC, children with hemophilia attend multiple outpatient clinic visits annually. During these visits, patients and their caregivers receive education about the bleeding disorder, its treatment, and potential consequences. However, grasping the information during these visits can be challenging, especially as most of it is conveyed verbally. This poses a particular difficulty for patients and caregivers with lower literacy levels.

To enhance the information provided to hemophilia patients and caregivers, HTCs must offer comprehensive support to ensure patients understand the information communicated during outpatient clinic visits. Improving information provision in these contexts aims to make significant progress towards a future where patient information and education are improved, resulting in better outcomes for those living with hemophilia.

This graduation project involved conducting research through literature reviews, analyzing materials, observing HTC's operations, and interviewing healthcare professionals, patients and their caregivers, and relevant stakeholders. The findings revealed several pain points regarding the current information provision. These areas include the information exchanged during outpatient clinic visits and the accessibility of provided information outside of these visits. Consequently, two solutions were developed: an information tool named "Samen Spraak," designed to enhance information exchange between healthcare professionals and parents by introducing interactivity and structure during consultations. This tool is then detailed in a strategy outlining a digital solution's implementation roadmap.

Based on this developed tool and strategy, it is advisable to classify it under the Dutch Association for Hemophilia Patients (NVHP) for further implementation and testing. Future research could explore expanding the approach to other blood clotting disorders across all age groups.

Human-Centered Design
Information provision
Implementation
Healthcare

http://resolver.tudelft.nl/uuid:36771000-94ef-49bf-8a27-f072e48da221

Student theses

master thesis

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