title: User-Centric eHealth Tool to Address the Psychosocial Effects of Sickle Cell Disease.
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.
authors.affiliation: Health Informatics Centre (LIME), Karolinska Institutet, Stockholm, Sweden.
authors.forename: David-Zacharie
authors.initials: DZ
authors.lastname: Issom
authors.affiliation: Norwegian Centre for Integrated Care and Telemedicine, University Hospital of North Norway, Tromsø, Norway.
authors.forename: Gunnar
authors.initials: G
authors.lastname: Hartvigsen
authors.affiliation: Health Informatics Centre (LIME), Karolinska Institutet, Stockholm, Sweden.
authors.forename: Stefano
authors.initials: S
authors.lastname: Bonacina
authors.affiliation: Health Informatics Centre (LIME), Karolinska Institutet, Stockholm, Sweden.
authors.forename: Sabine
authors.initials: S
authors.lastname: Koch
authors.affiliation: Division of Medical Information Sciences, Geneva University Hospitals, Switzerland.
authors.forename: Christian
authors.initials: C
authors.lastname: Lovis
mesh_terms: D000755:Anemia, Sickle Cell / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy*; D063731:Mobile Applications; D018802:Patient-Centered Care / Q000458:organization & administration; D011584:Psychology; D012648:Self Care / Q000379:methods*; D061108:Social Media / Q000458:organization & administration*; D060756:Social Networking; D017216:Telemedicine / Q000458:organization & administration*; D014584:User-Computer Interface