This pilot study investigated the feasibility and preliminary efficacy of an Internet Support Group (ISG) for parents of children with NF1. Eligible parents were recruited by email and completed baseline questionnaires assessing social support, self-efficacy, depression, and anxiety. The ISG involved eight weekly 90-min chat sessions and a discussion forum open 24 h/day for 8 weeks. Follow-up measures were completed immediately post-intervention and 3 months later. Parents from 33 families (29 mothers, 4 fathers) completed baseline measures. Over half of parents (52 %) rated their child's disease severity as mild, 33 % moderate, and 15 % severe. Among 21 parents who completed post-intervention measures, ratings of perceived emotional (p = .0008) and informational (p = .0003) support increased. There were no significant changes in self-efficacy, depression, or anxiety (ps > .05). The mean satisfaction rating was moderately high (7.6/10; range 4-10). Some parents commented that the chat sessions were at inconvenient times, which may have limited participation. Preliminary evidence in this small sample of parents suggests that ISGs may be a feasible and potentially efficacious method of providing support to parents of children with NF1. Having multiple weekly chat sessions held at various days and times may improve accessibility and participation. Clinicians are encouraged to help parents access online support resources.

The Checklist for Autism Spectrum Disorder (CASD) completed by a psychologist (following standardized procedures integrating parent interview data, teacher report, and clinical observations) was compared with the CASD completed independently by mothers and teachers in 168 children with ASD and 40 with ADHD (1-12 years). The 30 CASD autism symptoms are scored as present or absent. Using mother scores 36% of children with ASD scored below the autism diagnostic cutoff, and 75% scored below the cutoff based on teacher scores. Many symptoms deemed present by the psychologist were not reported on the mother and teacher CASD. Mother-teacher correlations indicated little correspondence. Mother and teacher CASD scores should never be used alone. Diagnostic instruments must be administered following standardized procedures.

Demographics contributed little to the presence of DMDD symptoms in all groups, whereas oppositional defiant disorder (ODD) explained most of the variance. Almost all children with DMDD symptoms had ODD suggesting that DMDD may not be distinct from ODD.

Parents of children with neurofibromatosis type 1 (NF1), a rare genetic condition, are at risk for emotional distress. While they may benefit from support groups, they may find it difficult to access support. We conducted an 8-week Internet support group (ISG) with 33 parents (29 mothers, 4 fathers) of children with NF1. Transcripts were evaluated using inductive thematic analysis to determine parental needs and concerns; a process and content theme were identified, with each containing codes and subcodes. In terms of process, parents utilized the ISG to seek out information, share information and experiences, and provide and receive emotional support. Common content codes included medical concerns, psychosocial/cognitive development, and accessing NF1 community resources. These concerns highlight the importance of providing parents with reliable information about their child's condition, providing multidisciplinary support to the children with NF1 and their families, and encouraging involvement in the NF1 community.