National lockdown and the threat of COVID-19 over the past 9 months have certainly painted a different picture for us all. The goal of Childhood Cancer Network SA is to collaborate for the benefit of children with cancer and their families. This came to fruition during this trying time as stakeholders continued to play their vital roles, despite navigating multiple constraints: a lack of information, limited access to medication and no communication from government, to name a few.
Challenges We Faced
Possibly the greatest difficulty was to effectively manage the needs of the patients with cancer. Their increased susceptibility to infection because of their immunosuppressed status, due to both the disease and their treatment, was a formidable concern. Across our organisations, it was clear that the focus was to ensure that all patients on treatment received their treatment, and were admitted if necessary.
Currently, patients with COVID-19 are prioritised. This may have had major negative impacts on delayed cancer diagnosis, investigations, and cancer treatment including chemotherapy, surgery and radiation. Professor Janet Poole, Principal Paediatrician of Paediatric Haematology/Oncology at CMJAH, said that follow-up patients had to be triaged. “Patients not receiving active treatments were given appointments later in the year, in the hope that we would not miss anything,” she said.
The reality was that all this was hampered by constantly changing policies and procedures within the hospital environment, coupled with staff that were under a lot of stress. In addition, the initial support of the social workers, volunteers, and activities normally done, was lost. Parents and caregivers were restricted to one person attending clinic and rooming in, and this caused much distress to the families and staff alike. The ‘child-friendly’ environment was lost.
Working Together to Keep Hope Alive
Fortunately, CHOC’s psychosocial team were soon able to be actively involved in the wards. They continued to deliver nurturing care and support to the children, teens and their families. The medical teams relied strongly on their professional assistance, as did members of the Childhood Cancer Network. The Rainbows and Smiles Foundation and other members of the Childhood Cancer Network delivered food parcels and donations to the hospital entrances and CHOC social workers distributed them on their behalf.
Lifting the COVID-19 Stigma to Prevent Delays in Diagnosis
Another large concern was for families who were reluctant to take their children to the doctor due to the COVID-19 risk. A delay in diagnoses could result in more advanced cancer that is harder to treat. Efforts were put in place to create awareness around breaking down barriers and lifting the stigma that can quickly emerge during a time of crisis. This included talking honestly and encouraging safety protocols, spreading the facts, showing empathy and kindness and challenging myths.
Prof. Poole clarified some of these myths:
- She reiterated that children are far less likely than adults to be infected by COVID-19,
- that the risk of severe COVID-19 disease in children with cancer across the world remains low.
- that there is also evidence to suggest that children do not spread COVID-19 in the same way as adults, and
- that child to child transmission is rare.
Receiving Treatment and Staying Informed
Professor Gita Naidu, Head of Paediatric Oncology at the Chris Hani Baragwanath Academic Hospital at the University of the Witwatersrand, mentioned that research articles say that children with cancer may display an increased vulnerability to poorer outcomes with COVID-19, while receiving therapy.
While still positive, her message to patients with childhood cancer and their families is to stay informed of the facts. She quoted the following from research that calls for careful consideration if undergoing therapy :
- Research shows that oncology surgery should not be postponed if there is rapid progress, impairment of organ function or any life-threatening situation. 
- Due to the current shortage of blood products and ICU beds, these must be factored in to the risk-benefit assessment for surgery.
- There is no data available regarding delaying chemotherapy in asymptomatic patients infected with COVID-19.
- For aggressive cancer, the risk-benefit assessment must be considered and treatment must proceed if the benefit outweighs the risk.
- Maintenance chemotherapy should be changed to oral chemotherapy and telephonic consultations between doctors and patients should be used to monitor patients. Weekly chemotherapy doses could be omitted and dose reductions could be considered .
- Paediatric Oncology patients require radiation therapy, and this again is protocol based. Delays may adversely affect long-term outcomes.
Coming Together During Times of Crisis
Financially, very few organisations have been able to escape the negative impact of the pandemic. As challenging as the last few months have been, CCNSA has been spurred on to work together as a collective group, to ensure that every child with cancer or a life-threatening blood disorder receives the best support: access to treatment, essential medicine and palliative care.
CHOC is part of the Childhood Cancer Network in SA. We came together as a collective group in 2016 to work together for the benefit of the children with cancer and their families, not to duplicate services, but rather to address gaps. Although everyone has different roles, our hearts are all in the same place – to fulfil the purpose of supporting children and teens with cancer and life-threatening blood disorders, and their families.
CHOC would like to thank Prof. Janet Poole, Prof. Gita Naidu, Bonita Suckling (Rainbows and Smiles Foundation) and Adri Ludick for their input.
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