As treatments develop and survivorship increases so do the co-morbidities and impacts of chronic diseases associated with acquired brain injury and treatment. At the time of acute treatment, the focus is on cure, to survive. Treatment is often lengthy and incredibly challenging alongside rehabilitation for acquired brain injury, often punctuated but acute events. By the time treatment is completed, many families are emotionally and physically spent and the fight for education and access to special education or educational healthcare plans becomes an insurmountable task. 

Brain tumour in children and young people is associated with negative impacts on communication and cognition, these are thought to be multifactorial. Subsequently, educational difficulties in brain tumour survivors are common. This impact can also be seen in their social functioning and eventual employment rates, both of which are below that of non-cancer patients. Poverty and financial reliance on parents of childhood brain tumour was found in over 60% of the cases described by Howard et al (2014) study into quality-of-life outcomes for brain tumour survivors.

It is well documented that deprivation or being in a position of relative disadvantage is associated with poorer physical health and mental health (Public Health England, 2023). Making this client group fall within some of the most vulnerable groups of our society. Education provides opportunity, develops skills that helps people to make decisions in life, increasing chances of employment avoid living in poverty. For children with a brain injury, additional education and support plans are often required to create packages of care that meet the individual's needs to give children and young people the best chance to reach their potential. This requires high level nursing skill and knowledge and the long-standing commitment of a service to support this, but in our current healthcare climate, this is under resourced.

verse Childhood Event (ACE) are defined as events such as child abuse; severe prolonged distress or physical or emotional neglect; and various household challenges that occur from birth to the age of 17 (Zarnello et al, 2023). It is believed that exposure to traumatic events in childhood has a significant lasting impact on brain development, the immune system, hormonal stress responses and gene expression. This research has informed a great number of safeguarding and health promotion strategies across the UK as ACE and significant distress in childhood have been associated with negative physical and mental health outcomes, poor social outcomes, and early mortality.

Studies tell us that ACE has also been linked to greater risk of some of the higher causes of death in adulthood including heart disease and cancer. ACEs are also associated with numerous psychological issues in early adulthood, higher instance rate of depression, anxiety, suicidal ideation and attempts. The association between ACE and later-life dementia risk was recently described and a study that found more than one adverse childhood event was associated with worse psychomotor speed and verbal fluency in later life. Despite our extensive knowledge around the psychological distress of a brain tumour diagnosis in childhood, why is it not defined as an ACE with investment into how we can prevent its far-reaching impacts?

Neuro-oncology nurses are seeking greater investment and collaboration with our colleagues in special education to support children and young people to remain in education. They deserve our investment now to protect their long-term health in adulthood. Successful treatment can no longer be measured on survival alone, lets help children and young people to live well.

For more information, see: Childhood brain tumours

References

Howard, F., Hasan, H., Bobinski, A., Nurcome, W., Olson, R., Parkinson, M., Goddard, K. (2014) Parents perceptions of life challenges experience by long-term paediatric brain tumour survivors: work and finances, daily and social functioning, and legal difficulties. Journal of Cancer Survivorship. 8, pp. 372-383

Department of Health (2023) Mental health: environmental factors

Zarnello, L (2023) Implementing trauma-informed care across the lifespan to acknowledge childhood adverse event prevalence: best clinical practices. The Nurse Practitioner. 48 (2), pp. 14-21.