80 Chapter 3 Table 1. Sociodemographic characteristics of participants in every step of the development process Step 1: identification of important themes (N=15) Step 2: evaluating draft version (N=13*) Step 3: usability testing (N=4) M (range) M (range) M (range) Age (years) 15.0 (12-18) 15.5 (13-18) 14.5 (13-16) % % % Gender (female) 60 61.5 50 Type of chronic disease % % % Cancer 20 23.0 100 Sickle cell disease 26.6 15.4 Cystic fibrosis 13.3 15.4 Juvenile idiopathic arthritis 13.3 15.4 Kidney disease 15.4 Chronic eczema 6.7 7.7 Asthma 7.7 Chronic pain 6.7 Crohn’s disease 6.7 Muscular diseases 6.7 * Nine adolescents also participated in Step 1 Step 1: Identification of important themes for adolescents in health care and preferences for an engagement game In total, 15 adolescents (mean age: 15.0 years, range 12-18 years, 60% female) participated in four focus groups and four interviews (Table 1). Ten major themes for adolescents regarding their illness, treatment, and hospital care were identified: visiting the hospital, participating, disease and treatment, social environment, feelings, dealing with staff, acceptation, autonomy, disclosure and chronically ill peers (Table 2). Most of the adolescents liked the idea of a patient engagement card care. A few adolescents mentioned that they would prefer an online game. Based on the identified themes, a draft version of the game was developed by design agency Studio Dam, in consultation with the research team consisting of psychologists and medical doctors, representatives of the youth panel of FNO and the patient associations (VSOP, VKN).
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