As HD cannot be cured, contemporary treatment is mainly focused on symptom management and quality of life (QoL) improvement. However, speciliazed care teams for HD are in short supply. As a consequence, HD gene carriers and their families have to travel far to reach health services that are not available locally. Given the devastating consequences of HD for gene carriers and their companions, there is an urgent need to develop innovative ways to reduce the impact of disease, primarily by providing access to best practices less constrained by location. This should be organized in such a way that HD gene carriers can live at home as long as possible. eHealth provides promising opportunities to facilitate such care.
Aim and methods
In HD-eHelp we aim to develop an eHealth care model that will facilitate QoL in HD gene carriers and their companions. We will do so by employing user-centered design (UCD). This means that the eHealth care model will be developed together with end-users (i.e., HD patients, companions, health care providers) from each participating country (i.e., the Netherlands, Czech Republic, the United Kingdom, Ireland, Germany, Italy). The UCD process will consist of three phases:
1) Exploration of needs and wishes of end-users;
2) Development of concepts, which will be evaluated by end-users and (re)adjusted accordingly;
3) Detailing of final prototype, and subsequent evaluation by end-users on feasibility and user-experience.
The multilingual, multicultural eHealth care model will address needs and expectations of HD patients and their companions to enable gene carriers to live at home as long as possible. Specific features of the module can be selected based on individual needs, allowing for tailored care. This is highly relevant given clinical heterogeneity in HD. Moreover, eHealth can be easily distributed, providing accessible high-quality care from within the individual’s home. Together, these aspects maximize the opportunity to facilitate QoL.