QOL-48. Neuropsychological intervention for pediatric brain tumor patients and survivors: a pre-study with a focus on patient involvement
Research output: Contribution to journal › Research article › Contributed › peer-review
Contributors
Abstract
BACKGROUND: Neuropsychological (i.e. cognitive, emotional and social) sequelae after pediatric brain tumors (PBT) can severely impair dailylife 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.
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.
Details
| Original language | English |
|---|---|
| Number of pages | 1 |
| Journal | Neuro-oncology |
| Volume | 26 |
| Issue number | Supplement_4 |
| Publication status | Published - Jun 2024 |
| Peer-reviewed | Yes |
| Externally published | Yes |