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User-Centric eHealth Tool to Address the Psychosocial Effects of Sickle Cell Disease

Issom, David-Zacharie
Hartvigsen, Gunnar
Bonacina, Stefano
Koch, Sabine
Published in Studies in Health Technology and Informatics. 2016, vol. 225, p. 627-628
Abstract Sickle cell disease (SCD) is the most prevalent blood inherited disorder in the world. Patients suffer from several chronic issues, comorbidities and high-mortality rates. Despite its prevalence, the disease remains largely ignored. A literature review was conducted and a questionnaire was sent to patients in order to understand the potential of e-health tools to support people with SCD. Additionally, focus groups have been conducted to detail respondents' answers. The results showed that patients felt isolated and misunderstood. They also highlighted patients' wishes for a social network able to make them feel less scattered. Using participatory-design techniques, we designed a prototype of user-centric interface for an online self-supportive SCD patient community. The mock-ups include chatrooms, forums and videoconferences capabilities. They illustrate how SCD patients' social networking and caregivers-patient relationship needs could be met. Future work will focus on the implementation and evaluation of the system.
PMID: 27332283
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Article (Published version) (150 Kb) - public document Free access
Research group Interfaces Homme-machine en milieu clinique (610)
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ISSOM, David-Zacharie et al. User-Centric eHealth Tool to Address the Psychosocial Effects of Sickle Cell Disease. In: Studies in Health Technology and Informatics, 2016, vol. 225, p. 627-628. doi: 10.3233/978-1-61499-658-3-627 https://archive-ouverte.unige.ch/unige:88674

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Deposited on : 2016-11-03

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