Academic Journal
Study protocol for the development of a European eHealth platform to improve quality of life in individuals with Huntington's disease and their partners (HD-eHelp Study): a user-centered design approach
| العنوان: | Study protocol for the development of a European eHealth platform to improve quality of life in individuals with Huntington's disease and their partners (HD-eHelp Study): a user-centered design approach |
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| المؤلفون: | Lonkhuizen, P.J.C. van, Vegt, N.J.H., Meijer, E., Duijn, E. van, Bot, S.T. de, Klempir, J., Frank, W., Landwehrmeyer, G.B., Muehlbaeck, A., Hoblyn, J., Squitieri, F., Foley, P., Chavannes, N.H., Heemskerk, A.W., HEALTHE RND Consortium |
| المصدر: | Frontiers in Neurology |
| سنة النشر: | 2021 |
| المجموعة: | Leiden Repository (Leiden University) |
| مصطلحات موضوعية: | Huntington disease, neurodegenerative diseases, telemedicine, eHealth, user-centered design, quality of life, study protocol, tele-neurology |
| الوصف: | Background: Huntington's disease (HD) is an autosomal dominant neurodegenerative disease that affects the quality of life (QoL) of HD gene expansion carriers (HDGECs) and their partners. Although HD expertise centers have been emerging across Europe, there are still some important barriers to care provision for those affected by this rare disease, including transportation costs, geographic distance of centers, and availability/accessibility of these services in general. eHealth seems promising in overcoming these barriers, yet research on eHealth in HD is limited and fails to use telehealth services specifically designed to fit the perspectives and expectations of HDGECs and their families. In the European HD-eHelp study, we aim to capture the needs and wishes of HDGECs, partners of HDGECs, and health care providers (HCPs) in order to develop a multinational eHealth platform targeting QoL of both HDGECs and partners at home. Methods: We will employ a participatory user-centered design (UCD) approach, which focusses on an in-depth understanding of the end-users' needs and their contexts. Premanifest and manifest adult HDGECs (n = 76), partners of HDGECs (n = 76), and HCPs (n = 76) will be involved as end-users in all three phases of the research and design process: (1) Exploration and mapping of the end-users' needs, experiences and wishes; (2) Development of concepts in collaboration with end-users to ensure desirability; (3) Detailing of final prototype with quick review rounds by end-users to create a positive user-experience. This study will be conducted in the Netherlands, Germany, Czech Republic, Italy, and Ireland to develop and test a multilingual platform that is suitable in different healthcare systems and cultural contexts. Discussion: Following the principles of UCD, an innovative European eHealth platform will be developed that addresses the needs and wishes of HDGECs, partners and HCPs. This allows for high-quality, tailored care to be moved partially into the participants' home, thereby ... |
| نوع الوثيقة: | article in journal/newspaper |
| وصف الملف: | application/pdf |
| اللغة: | English |
| Relation: | https://www.frontiersin.org/articles/10.3389/fneur.2021.719460/full; lumc-id: 120914532; https://hdl.handle.net/1887/3217548 |
| DOI: | 10.3389/fneur.2021.719460/full |
| DOI: | 10.3389/fneur.2021.719460 |
| الاتاحة: | https://hdl.handle.net/1887/3217548 https://www.frontiersin.org/articles/10.3389/fneur.2021.719460/full https://doi.org/10.3389/fneur.2021.719460 |
| رقم الانضمام: | edsbas.5AFCA0B6 |
| قاعدة البيانات: | BASE |
| DOI: | 10.3389/fneur.2021.719460/full |
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