E25 Q96 Q97 Q98 Q99 Q50-Q56
Conditions
Interventions
Group 1: Children and adolescents with a difference of sex development (diagnoses: turner syndrome, klinefelter syndrome, CAH, MRKH, DSD) and their parents take part in a structured, modular 2-day tra
Sponsors
Charité Universitätsmedizin Berlin
Eligibility
Sex/Gender
All
Age
6 Years to No maximum
Inclusion criteria
Inclusion criteria: Patients with Turner Syndrome, Klinefelter Syndrome, XX-/XY-DSD or Congenital adrenal hyperplasia (CAH); diagnosis confirmation by chromosome analysis, genetic test result, laboratory examination or clinical examination; children between 6-13 years; adolescents/young adults between 14-24 years; Parents/caregivers of concerned children/teenagers or young adults; professionals who conducted the training; peers who participated in the training as peer counselors or who have participated in the development of the training program; the informed consent of concerned persons (6 years and older) and parents/caregivers, professionals and peers is available.
Exclusion criteria
Exclusion criteria: no informed consent of participants ( patients, parents/caregivers, professionals, peers); participation in other studies dealing with training on DSD diagnosis, children between the ages of 6 and 7 without the cognitive development to participate in the educational programme
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Quality of life by questionnaire (KINDL, WHO-5, Cantrill ladder) at time t0 (before training), t2 (3 months after training), t3 (6 months after training) | — |
Secondary
| Measure | Time frame |
|---|---|
| diagnosis relevant knowledge/ health knowledge, coping, disease burden, shame at times t0, t2, t3 by means of self-constructed questions, adapted CODI, BIS; satisfaction with training program directly after the training on t1 (adapted ZUF-8) | — |
Countries
Germany
Contacts
Public ContactAnne Eyck
Charité-Universitätsmedizin BerlinSPZ interdisziplinär – Bereich Endokrinologie
Outcome results
None listed