Social and psychological support for adolescents and young adults with Neurofibromatosis type 1

Social and psychological support for adolescents and young adults with NF1

Status

Recruiting

Phases

Unknown

Study type

Interventional

Source

NL-OMON

Registry ID

NL-OMON23793

Enrollment

100

Registered

2013-10-25

Start date

2013-05-01

Completion date

Unknown

Last updated

2024-02-28

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

Conditions

Neurofibromatosis type 1 social and psychological support participation and needs Neurofibromatose type 1 sociale en psychologische ondersteuning participatie en zorgvraag

Interventions

5 psychological and social support groups and a maximum of 4 individual sessions

Eligibility

Inclusion criteria

Inclusion criteria: Patient diagnosed with NF1 by a doctor via the official NIH criteria; Age: 16-30 years; A signed informed consent by the patient and if the patient is a minor, then a signed informed consent by the parents is needed as well.

Exclusion criteria

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.

Design outcomes

Primary

Measure	Time frame
Mental quality of life (SF-36, mental scale)	—

Secondary

Measure	Time frame
Physical quality of life (SF-36, physical scale); Self efficacy in coping with a chronic condition(Dutch versions of the On Your Own Feet - Self Efficacy Scale and General Self Efficacy Scale); Level of fatigue (Dutch version of the Checklist Individual Strength); 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; Specific questionnaire to measure the burden of appearance in NF1 (pilot dutch questionnaire "The burden of Visibility of NF1); Service satisfaction: some questions abbreviated from the Verona Service Satisfaction Scale	—

Measure

Time frame

Physical quality of life (SF-36, physical scale); Self efficacy in coping with a chronic condition(Dutch versions of the On Your Own Feet - Self Efficacy Scale and General Self Efficacy Scale); Level of fatigue (Dutch version of the Checklist Individual Strength); 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; Specific questionnaire to measure the burden of appearance in NF1 (pilot dutch questionnaire "The burden of Visibility of NF1); Service satisfaction: some questions abbreviated from the Verona Service Satisfaction Scale

—

Contacts

Public ContactC. Bouman

Erasmus MC Sophia Kinderziekenhuis Dr. Molewaterplein 60

c.p.bouman@erasmusmc.nl+31 107038830

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP)