Neurofibromatosis 1, Social Skills
Conditions
Brief summary
This is a pilot randomized control trial of the UCLA PEERS protocol delivered via Telehealth with teens with neurofibromatosis type 1 whose parents report that they have difficulty making and keeping friends.
Interventions
BEHAVIORALPEERS
Structured social skills curriculum including didactics, behavioral rehearsal, parent coaching, and parent coaching support.
Sponsors
NF Midwest
NF Northeast
University of Wisconsin, Milwaukee
Study design
Allocation
RANDOMIZED
Intervention model
CROSSOVER
Primary purpose
TREATMENT
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
12 Years to 17 Years
Healthy volunteers
Yes
Inclusion criteria
* Physician diagnosis of neurofibromatosis type 1 * Age 12-17 * Main language spoken in the home is English * Reliable internet access * Current functional impairment in peer relationships * Teen is interested and motivated to participate
Exclusion criteria
* Main language spoken in the home is not English * Cognitive or developmental difficulties that affect reading comprehension or understanding of treatment material * Significant behavioral concerns * Other comorbid medical conditions * Major surgery in past 6 months * Prior social skills group treatment within past 6 months * Prior participation in PEERS
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Social Skills Improvement System - SEL (SSIS-SEL; Gresham & Elliot, 2017) Parent | within 4 weeks of PEERS completion | Change from pre- to post-test on SSIS-SEL parent Total Standard Score (measures social functioning) |
| Test of Adolescent Social SKills (TASSK: Laugeson & Frankel, 2010) | within four weeks of PEERS completion | Change from pre- to post-test on total score (measures knowledge of the PEERS concepts) |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Social Responsiveness Scale -2 (SRS-2; Constantino, 2005) | within 4 weeks following PEERS completion | change from pre- to post-test on Total SRS-2 completed by caregivers (measure of social impairment) |
| Social Skills Improvement System - SEL (SSIS-SEL; Gresham & Elliot, 2017) Teen | within 4 weeks of PEERS completion | Change from pre- to post-test on teen self-report of social functioning |
Other
| Measure | Time frame | Description |
|---|---|---|
| Peds QL (Varni et al, 2002) Parent | within 4 weeks of PEERS completion | Change from pre- to post-test in parental ratings of QoL |
| Peds QL (Varni et al, 2002) Teen | within 4 weeks of PEERS completion | Change from pre- to post-test in teen ratings of QoL |
Countries
United States
Contacts
Primary ContactBonita P Klein-Tasman, PhD
Backup ContactDanielle Glad
Outcome results
None listed