Clinical Trial: Parental Coping With Challenging Behavior in Mucopolysaccharidosis Type I-III

Study Status: Not yet recruiting
Recruit Status: Not yet recruiting
Study Type: Observational

Official Title: Behavioral Challenges in Children With Mucopolysaccharidosis Type I-III and Parental Coping Strategies

Brief Summary: The study quantitates behavioral challenges in mucopolysaccharidosis type I-III and parental coping strategies

Detailed Summary:

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.


Sponsor: University Hospital Heidelberg

Current Primary Outcome: Coping strategies for challenging behavior and for family burden in mucopolysaccharidosis type I-III [ Time Frame: 10 minutes ]

assessed by visual analogue scale


Original Primary Outcome: Same as current

Current Secondary Outcome:

  • Quantity of behavioral abnormalities in children with mucopolysaccharidosis type I-III [ Time Frame: 10 minutes ]
    assessed by visual analogue scale
  • Intensity of behavioral abnormalities in children with mucopolysaccharidosis type I-III [ Time Frame: 10 minutes ]
    assessed by visual analogue scale
  • Psychosocial burden in families with mucopolysaccharidosis type I-III [ Time Frame: 10 minutes ]
    assessed by visual analogue scale
  • Psychosocial burden in families with mucopolysaccharidosis type I-III [ Time Frame: 10 minutes ]
    assessed by Likert scale


Original Secondary Outcome: Same as current

Information By: University Hospital Heidelberg

Dates:
Date Received: April 24, 2017
Date Started: June 2017
Date Completion: October 2017
Last Updated: May 18, 2017
Last Verified: May 2017