Intervention Effectiveness on the Neurocognitive Functioning of Children and Adolescents With Neurofibromatosis Type 1 (OPTIMAL-SSI)
Neurocognitive Deficit, Mental Health Impairment, Neurofibromatosis 1
About this trial
This is an interventional health services research trial for Neurocognitive Deficit focused on measuring Neurofibromatosis, Neurocognitive, Intervention
Eligibility Criteria
Inclusion Criteria:
- Patients are eligible if they are English-speaking children and adolescents between the ages of 6 to 16 years diagnosed with NF who are currently followed by the Pediatric NF Clinic at VCU. Patients are eligible if they currently have a diagnosis of ADHD or do not have a diagnosis of ADHD.
- At least one parent/caregiver must be actively involved in the patient's care and able to complete study-related questionnaires at baseline, 3-, and 6-months; and the exit interview at 7-months. Parents are eligible if they if they are English-speaking adults 18+ years old and self-identify as the parent or guardian of the patient.
Exclusion Criteria:
- Presence of serious, chronic comorbid condition (asthma and ADHD are not exclusionary criteria), presence of serious cognitive/learning impairment (e.g., down syndrome, moderate to severe intellectual disability or developmental disability), temporary foster care or residential care placement with no known plans to remain with foster parent for at least one year, presence of serious ongoing psychiatric disorder that prevents patient or family member from accurately completing questionnaires, and/or family anticipates moving in the next 12 months.
- No subject will be excluded on the basis of gender or ethnicity.
Sites / Locations
- Children's Hospital of Richmond at Virginia Commonwealth University
Arms of the Study
Arm 1
Arm 2
Experimental
No Intervention
Intervention
Control
Parents in the intervention arm will receive one single-session intervention one month after completion of baseline measures. They will also complete a feasibility exit interview one month after completion of their data collection period (i.e., at 7 months).
Families in the control arm will complete measures at the exact same timepoints as those in the intervention arm but will not receive the single session intervention and will not complete the feasibility exit interview. They will receive the same information as the intervention arm via an education manual at the completion of their data collection period.