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‘Red flags’ missed in care of children with brain tumours during Covid pandemic, Cambridge study finds




An investigation into the impact of the Covid pandemic on the diagnosis, treatment and care of children and young people with brain tumours has found some red flags were missed due to the disruption to healthcare services.

Delays in diagnosis and challenges in securing the support needed were reported by families in the study, led by Cambridge University Hospitals NHS Foundation Trust and Lancaster University.

Addenbrooke's consultant Ibrahim Jalloh, an adult and paediatric neurosurgeon specialising in tumours of the brain and spinal cord, hydrocephalus, spina bifida, Chiari malformation, and paediatric brain injury
Addenbrooke's consultant Ibrahim Jalloh, an adult and paediatric neurosurgeon specialising in tumours of the brain and spinal cord, hydrocephalus, spina bifida, Chiari malformation, and paediatric brain injury

They found the experience was extremely challenging for parents and clinicians alike and identified a range of changes that could be made if services were similarly disrupted in future.

Paediatric brain tumours are the second most common childhood cancers, with about 500 children and young people diagnosed each year in the UK.

Delayed diagnosis can make treatment more complex and increase the likelihood of death. But diagnosing is often difficult because the symptoms and signs can be non-specific and are often picked up in optometry, primary care, nurseries and schools - all of which were disrupted during the pandemic.

Across three centres between January 2022 and June 2023, the researchers spoke to 20 caregivers and 10 children ranging from four months to 13 years and interviewed 16 people working within paediatric neuro-oncology - six specialist nurses, six consultants, one allied health professional and three representatives from brain tumour charities.

A ward during the Covid pandemic
A ward during the Covid pandemic

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

Getting into the system proved a prolonged journey for many families, with public health messages emphasising the importance of protecting the healthcare system sometimes leading to a reluctance to seek help.

Seeing a GP face-to-face proved more difficult and red flags were missed by community services, which were severely disrupted, especially in the early stages of the pandemic.

There were further challenges for families, siblings and grandparents because of infection control restrictions, which only allowed one primary caregiver to attend hospital with their children.

And the ‘togetherness’ needed to come to terms with diagnosis, manage treatment and collaborate with healthcare teams was often not possible.

Mask wearing and social distancing made establishing relationships and communicating with healthcare teams harder, while comprehending and retaining complex and emotional information without wider support proved difficult.

Healthcare workers reported major 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.

There were often postponements to investigations or treatments as key people or resources were not available.

Clinical services and charities deemed ‘non-essential’ were less visible, which impacted relationships that would usually be built with families in hospital.

Prof Rachel Isba, from Lancaster Medical School and Alder Hey Children’s Hospital, a consultant in paediatric public health medicine and professor of children and young people’s health.
Prof Rachel Isba, from Lancaster Medical School and Alder Hey Children’s Hospital, a consultant in paediatric public health medicine and professor of children and young people’s health.

Caregivers told the researchers they felt they had to ‘stay strong’ for their child but were often traumatised and found restrictions prevented them accessing the support they needed from family, friends and peers, in person or remotely.

But they were also grateful for the compassionate actions of healthcare staff, with many highlighting the camaraderie built during the period.

Many of the children found treatment traumatic, but said the relationships established amid a supportive and calm environment were pivotal.

While returning home after treatment was an important landmark for families, there was an enduring sense of isolation and lack of appropriate guidance during the pandemic.

Ibrahim Jalloh, an Addenbrooke’s consultant and one of the principal investigators, said: “Findings from this study offer practical insights from families and stakeholders to improve the healthcare system during future disruptions.”

Fellow principal investigator Prof Rachel Isba, from Lancaster Medical School and Alder Hey Children’s Hospital, added: “Overall, this study not only sheds light on the challenges faced by families during the pandemic but also provides suggestions for improving healthcare services to ensure a more comprehensive and effective response in times of crisis.”

The study, funded by Action Medical Research for Children, was run in collaboration with the University of Manchester, Manchester University NHS Foundation Trust and Nottingham University Hospitals NHS Foundation Trust.



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