The disease related intervention improves the psychosocial quality of life and self-efficacy of young adults with NF1.
ID
Bron
Verkorte titel
Aandoening
Neurofibromatosis type 1
social and psychological support
participation and needs
Neurofibromatose type 1
sociale en psychologische ondersteuning
participatie en zorgvraag
Ondersteuning
Onderzoeksproduct en/of interventie
Uitkomstmaten
Primaire uitkomstmaten
Mental quality of life (SF-36, mental scale)
Achtergrond van het onderzoek
From 2013 to 2014 we conduct a study in the Sophia Children's Hospital in Rotterdam for young people with NF1 (age 16-30 years).
The aim of the study is twofold: chart the need for care and advice, quality of life, self efficacy, psychopathology and participation in society and measure the effectivity of a short, disease related intervention designed to improve psychosocial quality of life.
SPOT-NF1 is a randomized controlled study: participants are randomly assigned to the treatment group or the control group, controlling for current psychological therapy.
Treatment consists of five two-hour group sessions, and if needed individual sessions with social worker or psychologist and digital support by a Facebook site.
Doel van het onderzoek
The disease related intervention improves the psychosocial quality of life and self-efficacy of young adults with NF1.
Onderzoeksopzet
The questionnaires will be filled in at the intake (T0) and six months later, at T=6.
Onderzoeksproduct en/of interventie
5 psychological and social support groups and a maximum of 4 individual sessions
Publiek
Dr. Molewaterplein 60
C. Bouman
Rotterdam 3015 GJ
The Netherlands
+31 107038830
c.p.bouman@erasmusmc.nl
Wetenschappelijk
Dr. Molewaterplein 60
C. Bouman
Rotterdam 3015 GJ
The Netherlands
+31 107038830
c.p.bouman@erasmusmc.nl
Belangrijkste voorwaarden om deel te mogen nemen (Inclusiecriteria)
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.
Belangrijkste redenen om niet deel te kunnen nemen (Exclusiecriteria)
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.
Opzet
Deelname
Opgevolgd door onderstaande (mogelijk meer actuele) registratie
Geen registraties gevonden.
Andere (mogelijk minder actuele) registraties in dit register
Geen registraties gevonden.
In overige registers
| Register | ID |
|---|---|
| NTR-new | NL4088 |
| NTR-old | NTR4226 |
| CCMO | NL41659.078.12 |
| ISRCTN | ISRCTN wordt niet meer aangevraagd. |