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FaBI: Family burden in Ichthyosis. Translation and psychometric validation of the Family Burden in Ichthyosis (FBI) - questionnaire for parents

FaBI: Family burden in Ichthyosis. Translation and psychometric validation of the Family Burden in Ichthyosis (FBI) - questionnaire for parents - FaBI

Status
Active, not recruiting
Phases
Unknown
Study type
Observational
Source
DRKS
Registry ID
DRKS00031444
Enrollment
125
Registered
2024-02-21
Start date
2024-05-02
Completion date
Unknown
Last updated
2025-04-07

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Q80.0

Interventions

Group 1: one time-point anonymous questionnaire study with parents of patients with congenital Ichthyosis

Sponsors

Kinder- und Jugendkrankenhaus Auf der Bult
Lead Sponsor

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

MeasureTime 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

MeasureTime 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

sassmann.heike@mh-hannover.de+495115324433

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 4, 2026