The study quantitates behavioral challenges in mucopolysaccharidosis type I-III and parental coping strategies
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.
Study Type
OBSERVATIONAL
Enrollment
34
This is an observational study
University of Heidelberg
Heidelberg, Germany
Coping strategies for challenging behavior and for family burden in mucopolysaccharidosis type I-III
assessed by visual analogue scale
Time frame: 10 minutes
Quantity of behavioral abnormalities in children with mucopolysaccharidosis type I-III
assessed by visual analogue scale
Time frame: 10 minutes
Intensity of behavioral abnormalities in children with mucopolysaccharidosis type I-III
assessed by visual analogue scale
Time frame: 10 minutes
Psychosocial burden in families with mucopolysaccharidosis type I-III
assessed by visual analogue scale
Time frame: 10 minutes
Psychosocial burden in families with mucopolysaccharidosis type I-III
assessed by Likert scale
Time frame: 10 minutes
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.