Development of the Huntington Support App (HD-eHelp study): a human-centered and co-design approach

Frontiers in Neurology, vol. 15, pp. 1399126

Abstract

Introduction: eHealth seems promising in addressing challenges in the provision of care for Huntington's disease (HD) across Europe. By harnessing information and communication technologies, eHealth can partially relocate care from specialized centers to the patients' home, thereby increasing the availability and accessibility of specialty care services beyond regional borders. Previous research on eHealth (development) in HD is however limited, especially when it comes to including eHealth services specifically designed together with HD gene expansion carriers (HDGECs) and their partners to fit their needs and expectations. Methods: This article describes the qualitative human-centered design process and first evaluations of the Huntington Support App prototype: a web-app aimed to support the quality of life (QoL) of HDGECs and their partners in Europe. Prospective end-users, i.e., HDGECs, their partners, and healthcare providers (HCPs), from different countries were involved throughout the development process. Through interviews, we captured people's experiences with the disease, quality of life (QoL), and eHealth. We translated their stories into design directions that were further co-designed and subsequently evaluated with the user groups. Results: The resulting prototype centralizes clear and reliable information on the disease, HD-related news and events, as well as direct contact possibilities with HCPs via an online walk-in hour or by scheduling an appointment. The app's prototype was positively received and rated as (very) appealing, pleasant, easy to use and helpful by both HDGECs and partners. Discussion: By involving end-users in every step, we developed a healthcare app that meets relevant needs of individuals affected by HD and therefore may lead to high adoption and retention rates. As a result, the app provides low-threshold access to reliable information and specialized care for HD in Europe. A description of the Huntington Support App as well as implications for further development of the app's prototype are provided.

Authors 12

1. Pearl J. C. van Lonkhuizen corresponding Aachen Department of Public Health and Primary Care National eHealth Living Lab

   Leiden University Medical Center

   Affiliation as printed

   Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands

   Huntington Center Topaz Overduin, Katwijk, Netherlands

   National eHealth Living Lab, Leiden University Medical Center, Leiden, Netherlands

2. Anne‐Wil Heemskerk Aachen Department of Public Health and Primary Care

   Leiden University Medical Center

   Affiliation as printed

   Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands

   Huntington Center Topaz Overduin, Katwijk, Netherlands

3. Eline M. Meijer Aachen Department of Public Health and Primary Care National eHealth Living Lab

   Leiden University Medical Center

   Affiliation as printed

   Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands

   National eHealth Living Lab, Leiden University Medical Center, Leiden, Netherlands

4. Erik van Duijn Aachen Department of Public Health and Primary Care

   Leiden University Medical Center

   Affiliation as printed

   Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands

   Huntington Center Topaz Overduin, Katwijk, Netherlands

5. Susanne Tamara de Bot Aachen Department of Neurology, Leiden University Medical Center (LUMC)

   Leiden University Medical Center

   Affiliation as printed

   Department of Neurology, Leiden University Medical Center, Leiden, Netherlands

6. Jiří Klempíř

   Charles University · General University Hospital in Prague

   Affiliation as printed

   Department of Neurology and Center of Clinical Neuroscience, First Faculty of Medicine, Charles University and General University Hospital in Prague, Prague, Czechia

7. G. Bernhard Landwehrmeyer

   University Hospital Ulm

   Affiliation as printed

   Department of Neurology, University Hospital Ulm, Ulm, Germany

8. Alžbeta Mühlbäck

   University Hospital Ulm

   Affiliation as printed

   Department of Neurology, University Hospital Ulm, Ulm, Germany

   Isar-Amper-Klinikum, Huntington-Zentrum-Süd, Klinik Taufkirchen, Munich, Germany

9. Jennifer C. Hoblyn

   Trinity College Dublin

   Affiliation as printed

   St. John of God Hospital, Trinity College Dublin, Dublin, Ireland

10. Ferdinando Squitieri

    Casa Sollievo della Sofferenza

    Affiliation as printed

    Centro Malattie Neurologiche Rare (CMNR), Italian League for Research on Huntington (LIRH) Foundation, Rome, Italy

    Huntington and Rare Diseases Unit, Fondazione IRCCS Casa Sollievo della Sofferenza Research Hospital, San Giovanni Rotondo, Italy

11. Niels Henrik Chavannes Aachen Department of Public Health and Primary Care National eHealth Living Lab

    Leiden University Medical Center

    Affiliation as printed

    Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands

    National eHealth Living Lab, Leiden University Medical Center, Leiden, Netherlands

12. Niko Vegt Aachen Department of Public Health and Primary Care National eHealth Living Lab

    Leiden University Medical Center · Delft University of Technology

    Affiliation as printed

    Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands

    Faculty of Industrial Design Engineering, Delft University of Technology, Delft, Netherlands

    National eHealth Living Lab, Leiden University Medical Center, Leiden, Netherlands