QOL-48. NEUROPSYCHOLOGICAL INTERVENTION FOR PEDIATRIC BRAIN TUMOR PATIENTS AND SURVIVORS - A PRE-STUDY WITH A FOCUS ON PATIENT INVOLVEMENT

Abstract

Abstract BACKGROUND Neuropsychological (i.e. cognitive, emotional and social) sequelae after pediatric brain tumors (PBT) can severely impair daily-life participation and consequently quality of life. Long-term access to appropriate interventions is therefore essential. Previous studies on effectiveness have recommended multi-component interventions tailored to the specific neuropsychological impairments and unique needs of the survivors. Hence, before conducting a new intervention study, we carried out a participative pre-study, in order to incorporate experienced needs of the group into a future concept. METHODS Known efficacy factors for neurocognitive interventions for PBT patients/survivors were analyzed in a systematic literature search (PubMed, PsychINFO and SCOPUS, 2000 -2024). In addition, a 3-part workshop (in total 4.5 days) was held with PBT survivors and carers (N=20) and Health-Care-Professionals (N=5). The “junior research academy” was designed to participatively run through the research process from the initial idea (how to improve interventions) to the study design. RESULTS After title and abstract screening only 27 studies remained for detailed analysis, with computerized/online cognitive training (mainly working memory), being the most frequently studied intervention, followed by exercise training. Single studies on the effect of medication, parent training, practice/strategy training and behavioral therapy, group training on social skills and neurofeedback were identified. Improvements in different domains have been shown, but recruitment often remains very difficult, as does the transfer to everyday life. Interestingly, the “junior research academy” developed in a slightly different direction: the winning projects (“family guide” or “everyday compass”) were primarily aimed at (1) providing quick and unbureaucratic information and support, (2) giving orientation in daily life, (3) helping to find appropriate interventions, and (4) providing emotional and organizational support. CONCLUSIONS A core group of the participating survivors and health-care-professionals will now finalize the development of an intervention with elements of both pillars and subsequently run a controlled trial.