Peer-reviewed article
QOL-32. THE PROMOTE STUDY: HEALTH-RELATED QUALITY OF LIFE COMMUNICATION NEEDS OF CHILDREN, ADOLESCENTS, AND THEIR FAMILIES ATTENDING OUTPATIENT CONSULTATIONS AFTER TREATMENT FOR A BRAIN TUMOUR
Stubley S, Freeman A, Liossi C, Darlington A, Grootenhuis M et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study explored the communication needs of children and adolescents who have completed treatment for brain tumours and their families during follow-up outpatient care in England. Children and parents reported challenges including fatigue, cognitive changes, school difficulties, and emotional distress, alongside barriers to discussing these issues such as short-term memory loss and emotional suppression. Families expressed need for better information about recovery and rehabilitation, and support with anxiety and emotional health. The researchers suggest that systematic documentation and digital records could help improve how these needs are identified and addressed in clinical care.
Key points
- Childhood brain tumour survivors face health-related quality of life issues including fatigue, physical changes, cognitive difficulties, school challenges, and social isolation
- Parents experience significant impact on the wider family and changes in their supportive role
- Communication barriers include short-term memory loss, shyness, and emotional regulation difficulties
- Families identified need for greater knowledge about cognitive changes and more support with anxiety and emotional health during recovery
- A systematic digital record system was proposed to monitor and document these communication needs to improve service planning
Limitations
This is a qualitative study of 18 families in the English NHS, so findings may not generalise to other healthcare settings or countries with different service models. The study identifies needs and barriers but does not test whether addressing these communication needs actually improves outcomes for survivors.
Abstract
Abstract BACKGROUND Childhood brain tumours and their treatment can reduce health-related quality of life (HRQoL) and cause anxiety and depression, withdrawal, and social isolation. Improved communication within outpatient consultations may allow early identification and treatment of these issues. We explored family communication needs in survivors of childhood brain tumours receiving six-monthly follow-up outpatient review within the English NHS. METHODS Semi-structured interviews were conducted with 18 families whose child aged 8–17 years had finished treatment for a brain tumour within the preceding five years. Thematic analysis used the Framework Method. RESULTS Adjusting to change and finding a “new normal” was the overarching theme to emerge. HRQoL issues included fatigue, coping with physical changes, challenges at school, isolation, and adjusting to changes in abilities. Survivors described a need for greater knowledge about and more support with changes in cognitive functioning. Parents spoke about the impact on the wider family and their changed role in supporting the child’s HRQoL. Communication barriers included short-term memory loss, shyness, and the need to suppress or regulate emotions evoked by these issues. Communication needs included more information regarding recovery and rehabilitation and/or help managing anxiety or emotional health. CONCLUSION The above communication needs and barriers should be addressed. Having a digital record to document and monitor this information systematically could improve service planning and provide patients and their families with the resources to reach their full potential and experience a better HRQoL.