Social and psychological support for adolescents and young adults with Neurofibromatosis type 1
Recruiting
- Conditions
- eurofibromatosis type 1social and psychological supportparticipation and needsNeurofibromatose type 1sociale en psychologische ondersteuningparticipatie en zorgvraag
- Registration Number
- NL-OMON23793
- Lead Sponsor
- Erasmus Medical Center - Sophia Kinderziekenhuis
- Brief Summary
/A
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Recruiting
- Sex
- Not specified
- Target Recruitment
- 100
Inclusion Criteria
Patient diagnosed with NF1 by a doctor via the official NIH criteria;
Age: 16-30 years;
Exclusion Criteria
Young adolescents without official diagnosis of Neurofibromatosis type 1;
Participants who do'nt have enough knowledge about the Dutch language to fill in the questionnaires.
Study & Design
- Study Type
- Interventional
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Mental quality of life (SF-36, mental scale)
- Secondary Outcome Measures
Name Time Method Physical quality of life (SF-36, physical scale);<br>Self efficacy in coping with a chronic condition(Dutch versions of the On Your Own Feet - Self Efficacy Scale and General Self Efficacy Scale);<br>Level of fatigue (Dutch version of the Checklist Individual Strength);<br>Participation in daily life (Dutch questionnaire: Impact op Participatie en Autonomie, several subscales will be used (roughly translated): pastime and recreation, social contacts and relationships, paid work or volunteer work, education and courses;<br>Specific questionnaire to measure the burden of appearance in NF1 (pilot dutch questionnaire The burden of Visibility of NF1);<br>Service satisfaction: some questions abbreviated from the Verona Service Satisfaction Scale