Q80.0
Conditions
Interventions
Group 1: one time-point anonymous questionnaire study with parents of patients with congenital Ichthyosis
Sponsors
Kinder- und Jugendkrankenhaus Auf der Bult
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: child with diagnosis of congenital Ichthyosis
Exclusion criteria
Exclusion criteria: unsufficient knowledge of German language
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| psychometric validation of the German "Family Burden in Ichthyosis (FBI)" questionnaire; outcome parameter: factor analysis and validity and reliability tests (e. g. internal consistency and criterion validity) | — |
Secondary
| Measure | Time frame |
|---|---|
| level of psychosocial burden of parents, e. g.: PHQ-9 GAD-7 FDLQI hypotheses: positive association between FaBI-total-score and depressive symptoms (PHQ-9) positive association between FaBI-total-score and anxiety symptoms (GAD-7) positive association between FaBI-total-score and QoL-impairment (FDLQI) positive association between FaBI-total-score and disease severity positive association between FaBI-total-score and maintenance effort positive association between FaBI-total-score and relationship quality (QMI-D) positive association between FaBI-total-score and reduction of working hours reduction of working hours depends on childs age and disease severity compared to fathers a higher proportion of mothers reduces their working hours | — |
Countries
Germany
Contacts
Public ContactHeike Saßmann
Medizinische Hochschule Hannover
Outcome results
None listed