Behavior Disorders, Coping Behavior, Mucopolysaccharidosis Type I, Mucopolysaccharidosis Type II, Mucopolysaccharidosis Type III
Conditions
Brief summary
The study quantitates behavioral challenges in mucopolysaccharidosis type I-III and parental coping strategies
Detailed description
This is a prospective, cross-sectional, observational study quantitatively assessing 1. challenging behavior in children with MPS, an orphan, progressive, neurodegenerative metabolic disorder, and 2. parental coping strategies for this challenging behavior. Patients registered at the German Society for Mucopolysacchardoses giving written informed consent are eligible. The study is based on questionnaires. IRB approval was obtained.
Interventions
OTHERThis is an observational study
This is an observational study
Sponsors
University Hospital Heidelberg
Study design
Observational model
CASE_ONLY
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
No minimum to 18 Years
Healthy volunteers
No
Inclusion criteria
* Diagnosis of mucopolysaccharidosis type I, II or III * Written informed consent * Patient is registered at the German Society for Mucopolysaccharidosis
Exclusion criteria
* Patient / Family does not give written informed consent.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Coping strategies for challenging behavior and for family burden in mucopolysaccharidosis type I-III | 10 minutes | assessed by visual analogue scale |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Quantity of behavioral abnormalities in children with mucopolysaccharidosis type I-III | 10 minutes | assessed by visual analogue scale |
| Intensity of behavioral abnormalities in children with mucopolysaccharidosis type I-III | 10 minutes | assessed by visual analogue scale |
| Psychosocial burden in families with mucopolysaccharidosis type I-III | 10 minutes | assessed by visual analogue scale |
Countries
Germany
Outcome results
None listed