• Something wrong with this record ?

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

PJC. van Lonkhuizen, AW. Heemskerk, E. Meijer, E. van Duijn, ST. de Bot, J. Klempir, GB. Landwehrmeyer, A. Mühlbäck, J. Hoblyn, F. Squitieri, NH. Chavannes, NJH. Vegt, HEALTHE-RND consortium

. 2024 ; 15 (-) : 1399126. [pub] 20240701

Status not-indexed Language English Country Switzerland

Document type Journal Article

Persistent link   https://www.medvik.cz/link/bmc24018304

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.

References provided by Crossref.org

000      
00000naa a2200000 a 4500
001      
bmc24018304
003      
CZ-PrNML
005      
20241016081922.0
007      
ta
008      
241008e20240701sz f 000 0|eng||
009      
AR
024    7_
$a 10.3389/fneur.2024.1399126 $2 doi
035    __
$a (PubMed)39011363
040    __
$a ABA008 $b cze $d ABA008 $e AACR2
041    0_
$a eng
044    __
$a sz
100    1_
$a van Lonkhuizen, Pearl J C $u Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands $u National eHealth Living Lab, Leiden University Medical Center, Leiden, Netherlands $u Huntington Center Topaz Overduin, Katwijk, Netherlands
245    10
$a Development of the Huntington Support App (HD-eHelp study): a human-centered and co-design approach / $c PJC. van Lonkhuizen, AW. Heemskerk, E. Meijer, E. van Duijn, ST. de Bot, J. Klempir, GB. Landwehrmeyer, A. Mühlbäck, J. Hoblyn, F. Squitieri, NH. Chavannes, NJH. Vegt, HEALTHE-RND consortium
520    9_
$a 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.
590    __
$a NEINDEXOVÁNO
655    _2
$a časopisecké články $7 D016428
700    1_
$a Heemskerk, Anne-Wil $u Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands $u Huntington Center Topaz Overduin, Katwijk, Netherlands
700    1_
$a Meijer, Eline $u Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands $u National eHealth Living Lab, Leiden University Medical Center, Leiden, Netherlands
700    1_
$a van Duijn, Erik $u Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands $u Huntington Center Topaz Overduin, Katwijk, Netherlands
700    1_
$a de Bot, Susanne T $u Department of Neurology, Leiden University Medical Center, Leiden, Netherlands
700    1_
$a Klempir, Jiri $u Department of Neurology and Center of Clinical Neuroscience, First Faculty of Medicine, Charles University and General University Hospital in Prague, Prague, Czechia
700    1_
$a Landwehrmeyer, G Bernhard $u Department of Neurology, University Hospital Ulm, Ulm, Germany
700    1_
$a Mühlbäck, Alzbeta $u Department of Neurology, University Hospital Ulm, Ulm, Germany $u Isar-Amper-Klinikum, Huntington-Zentrum-Süd, Klinik Taufkirchen, Munich, Germany
700    1_
$a Hoblyn, Jennifer $u St. John of God Hospital, Trinity College Dublin, Dublin, Ireland
700    1_
$a Squitieri, Ferdinando $u Huntington and Rare Diseases Unit, Fondazione IRCCS Casa Sollievo della Sofferenza Research Hospital, San Giovanni Rotondo, Italy $u Centro Malattie Neurologiche Rare (CMNR), Italian League for Research on Huntington (LIRH) Foundation, Rome, Italy
700    1_
$a Chavannes, Niels H $u Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands $u National eHealth Living Lab, Leiden University Medical Center, Leiden, Netherlands
700    1_
$a Vegt, Niko J H $u Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands $u National eHealth Living Lab, Leiden University Medical Center, Leiden, Netherlands $u Faculty of Industrial Design Engineering, Delft University of Technology, Delft, Netherlands
710    2_
$a HEALTHE-RND consortium
773    0_
$w MED00174552 $t Frontiers in neurology $x 1664-2295 $g Roč. 15 (20240701), s. 1399126
856    41
$u https://pubmed.ncbi.nlm.nih.gov/39011363 $y Pubmed
910    __
$a ABA008 $b sig $c sign $y - $z 0
990    __
$a 20241008 $b ABA008
991    __
$a 20241016081917 $b ABA008
999    __
$a ok $b bmc $g 2196517 $s 1230255
BAS    __
$a 3
BAS    __
$a PreBMC-PubMed-not-MEDLINE
BMC    __
$a 2024 $b 15 $c - $d 1399126 $e 20240701 $i 1664-2295 $m Frontiers in neurology $n Front Neurol $x MED00174552
LZP    __
$a Pubmed-20241008

Find record

Citation metrics

Archiving options