A Survivor's Journey: Preliminary efficacy of an online problem-solving therapy for survivors of pediatric brain tumor.

BACKGROUND: Although pediatric brain tumor survivors are at high risk for a variety of psychosocial and neurocognitive late effects, there are few evidence-based interventions to address their needs. The purpose of this study was to test the efficacy of an online problem-solving intervention on improving the quality of life and executive dysfunction among adolescent and young adult brain tumor survivors. PROCEDURE: A Survivor's Journey was adapted from a similar intervention for survivors of traumatic brain injuries, and involved self-guided web modules providing training in problem-solving as a tool for coping with everyday challenges, as well as weekly teleconferences with a trained therapist. Survivors (n = 19) between the ages of 13 and 25, and their caregivers, completed standardized measures of their emotional and behavioral functioning, executive functioning, and quality of life before and after the 12- to 16-week intervention. RESULTS: Participation in the intervention led to significant improvements in self-reported overall (Mpre  = 62.03, SDpre  = 17.67, Mpost  = 71.97, SDpost  = 16.75; d = 0.58, P = 0.01) and physical quality of life (Mpre  = 63.13, SDpre  = 21.88, Mpost  = 75.00, SDpost  = 21.33; d = 0.55, P < 0.01) as well as parent-reported emotional quality of life (Mpre  = 65.00, SDpre  = 28.72, Mpost  = 76.15, SDpost  = 23.47; d = 0.43, P = 0.03). Greater improvement was noted in those who were diagnosed before the age of seven and those with average or above average estimated IQs. Current age did not moderate outcomes. CONCLUSIONS: Online problem-solving therapy may be efficacious in improving pediatric brain tumor survivors' quality of life; however, further research with a comparison group is needed. Online interventions such as Survivor's Journey may decrease barriers to evidence-based psychosocial care for brain tumor survivors.

Development of a Web-Based Psychosocial Intervention for Adolescent and Young Adult Survivors of Pediatric Brain Tumor.

PURPOSE: To develop A Survivor's Journey, a web-based psychosocial intervention for adolescent and young adult (AYA) survivors of pediatric brain tumors (PBTs). METHODS: Stages of development included focus groups with five AYA survivors (ages 16-23 years) and six parents to identify needs and challenges, as well as surveys and interviews with clinical care providers at a survivorship clinic. RESULTS: Concerns reported by AYA survivors, parents, and providers were similar to those reported in the literature, including fatigue, memory deficits, poor mood, health concerns, and challenging peer relationships. However, concerns varied across survivors, underscoring the need for customizable interventions. Survivors and parents were interested in an intervention targeting psychosocial functioning and late effects, and reported a strong preference for web-based interventions that would reduce cost and travel burden on the family. INTERVENTION: Based on review of the literature, survivor and parent feedback, as well as provider input, a customizable intervention, A Survivor's Journey, was developed consisting of five core sessions (addressing concerns common to AYA survivors such as memory, staying positive, and problem solving) and up to seven supplemental sessions (addressing variable needs of survivors such as managing fatigue, inattention, planning/organization, communication/relationships, and self-care). CONCLUSION: Despite growing recognition of long-term challenges and late effects, there are few interventions targeting psychosocial well-being of AYA survivors. If efficacious, A Survivor's Journey will be an accessible and cost-effective intervention to improve psychosocial functioning of AYA survivors of PBT.