Children’s brain tumour study highlights lessons from Covid pandemic

While the results show the experience was extremely challenging for parents and clinicians, they also give valuable insights into the positive changes needed to make it less so in the event of a similar disruption to services in the future.

The study, just published in the British Medical Journal Open (opens in a new tab), is important because paediatric brain tumours are the second most common childhood cancers, with around 500 children and young people diagnosed each year in the UK.

Delays in diagnosis can make treatment more complex and increase the likelihood of death or disability. However, diagnosis is often difficult, as symptoms and signs can be non-specific - often picked up in optometry, primary care, nurseries and schools, all of which were also disrupted during the pandemic.

The study was led by Cambridge University Hospitals NHS Foundation Trust and Lancaster University, in collaboration with The University of Manchester, Manchester University NHS Foundation Trust and Nottingham University Hospitals NHS Trust.

The principal investigators were Mr Ibrahim Jalloh, an Addenbrooke’s consultant and Professor Rachel Isba, from Lancaster Medical School and Alder Hey Children’s Hospital. Mr Jalloh is an adult and paediatric neurosurgeon specialising in tumours of the brain and spinal cord, hydrocephalus, spina bifida, Chiari malformation, and paediatric brain injury. Professor Isba is a consultant in Paediatric Public Health Medicine and Professor of Children and Young People’s Health.

The study, funded by Action Medical Research for Children (opens in a new tab), involved interviewing parents and caregivers, children and young people, clinical staff and charities throughout the UK between January 2022 and June 2023, enabling them to reflect back on their treatment journeys.

Five major themes emerged from the work – challenges getting into the healthcare system; managing as a family during restrictions; complexities of building a supportive healthcare team; difficulties accessing practical and emotional support in hospital and ongoing difficulties experienced in the community.

For many families getting into the system was described as a prolonged journey from initial awareness to diagnosis. Public health messages emphasising the importance of protecting the healthcare system sometimes led to a reluctance to seek help. Seeing a GP face-to-face was more difficult and ‘red flags’ could be missed by community services which were severely disrupted, especially in the early part of the pandemic.

Infection control restrictions, which only allowed one primary caregiver to attend hospital with their child, posed significant challenges for families, including siblings and grandparents. Caregivers commented that coming to terms with the diagnosis, managing treatment, collaborating with healthcare teams, and supporting each other required ‘togetherness’, which was often not possible.

Establishing relationships and communicating with healthcare teams was made more challenging because of mask wearing and maintaining social distancing. Comprehending and retaining complex and emotional information without wider support was difficult.

Healthcare workers experienced significant challenges, including managing uncertainty and confusion, dealing with an increased workload, a sense of guilt and anxiety about assuming unfamiliar roles, and the social isolation inherent in their roles during the pandemic.

Investigations or treatments were frequently postponed as key people or resources were not available. Clinical services and charities that were deemed ‘non-essential’ became less visible, impacting on relationships that would usually be built with families in hospital.

Caregivers felt they had to ‘stay strong’ for their child but were often traumatised by their own experiences. Restrictions prevented many caregivers from accessing the support they felt they needed from family, friends, and peers, in person or remotely.

Caregivers were grateful for the compassionate actions of healthcare staff, with many highlighting the significance of the sense of camaraderie built during a difficult and isolating phase of their journey. For children, many of whom found treatment traumatic, the relationships established during treatment and a supportive and calm environment played a pivotal role.

Returning home after treatment was an important landmark for families. However, during the pandemic, many caregivers experienced an enduring sense of isolation and continued to lack appropriate guidance.

Mr Jalloh said:

Professor Isba added:

Throughout the three centres the team spoke to 20 caregivers and 10 children ranging from four months to 13 years and interviewed 16 stakeholders working within paediatric neuro-oncology. They included six specialist nurses, six consultants (neurosurgeons, oncologists), one allied health professional, and three representatives from brain tumour charities.