Childhood Cancer Awareness Month: Advocating for Long-Term Care for Childhood Cancer Survivors

Most childhood cancer survivors will develop at least one health problem or complication (late effects) months or years after the previous cancer or the treatment thereof. Since this could potentially have a negative impact on their ability to live a fulfilling life, they need long-term follow-up care after they have completed their treatment.

This is according to a new study at Stellenbosch University (SU).

“Considering that 60–75% of all childhood cancer survivors will suffer from late effects, we need more information on long-term follow-up care for survivors in South Africa, as well as a structured national programme to improve the early identification of these late effects and to intervene immediately,” says Dr Anel van Zyl, a paediatric oncologist in the Department of Paediatrics and Child Health at SU. Paediatric oncologists diagnose and treat cancer in children.

Van Zyl, who recently obtained her doctorate in Paediatrics at SU, adds that some of the barriers to long-term follow-up care for childhood cancer survivors in South Africa include a lack of formal training in and knowledge of such care among healthcare workers, as well as inadequate communication about potential late effects with survivors.

She wanted to highlight the importance of holistic long-term follow-up care after treatment and to develop a national programme that could help facilitate sustainable and equitable care for all survivors.

Van Zyl surveyed South African paediatric oncologists and haematologists (specialist doctors who diagnose and treat blood and bone marrow disorders) to document their long-term follow-up care practices. She used a quality-of-life and a psychological distress questionnaire to record the psychological complications of survivors of childhood cancer who participated in her research. Medical complications were identified by physical examination and directed special investigations. She also examined the patterns of healthcare engagement of survivors.

High prevalence

Van Zyl says almost all paediatric oncologists and haematologists in South Africa regarded long-term follow-up care and a national programme as important. Only two-thirds receive formal training about this topic and half discussed late effects at diagnosis with parents and children.

“Only half of the paediatric oncologists used long-term follow-up care guidelines with most adjusting them due to service constraints. Survivors were mostly followed at the paediatric oncology centres, while others were followed in a shared care model (care divided between the cancer centre and healthcare partners at secondary or primary healthcare institutions or general practitioners). Such a model is most suitable for the local context.

“Many survivors of childhood cancer in the study (91%) developed mostly mild or moderate long-term and late effects, significantly associated with cancer diagnosis, the intensity of chemotherapy, and radiotherapy. Some of these effects had a significant impact on survivors’ lives and required intervention.

“This prevalence of late effects is quite high and since the survivors are still fairly young, we are expecting it to increase as they become older. Being female and older, as well as the number and severity of late effects had a negative impact on their ability to live a fulfilling life. Survivors in my study had higher levels of psychological distress compared to that documented in the literature.”

Van Zyl says this information will help to monitor these survivors with a high risk to develop distress more closely and refer them for a formal psychological evaluation when indicated.

Work together

She adds that it is important for all healthcare professionals (nurses, doctors, and allied healthcare professionals) to be aware of these survivors’ significant risk for late effects and the type of late effects that may occur.

“Paediatricians training to become paediatric oncologists or haematologists should receive formal education about the late effects of childhood cancer and its treatment, and how to conduct holistic long-term follow-up care. Doctors also need to be educated as they will continue follow-up for the survivors as they get older.”

Van Zyl says the national risk-based shared-care programme that she developed is based on the shared care model where survivors are cared for by primary and secondary healthcare providers or general practitioners and paediatricians, with support from the paediatric oncology unit, and guided by a detailed survivorship care plan.

“Survivors with a lower risk for late effects will need fewer follow-up visits and investigations, while those with a high risk will receive more intensive follow-up and surveillance. Specific long-term follow-up care should facilitate early identification and intervention with hopefully a better quality of life and outcomes for survivors.

“Since it is challenging to retain childhood cancer survivors in a long-term follow-up care programme, such care should be provided as close to the survivors’ homes as possible. Therefore, we need healthcare professionals working in primary and secondary healthcare facilities and general practitioners to work with paediatric oncology units to care for this group of patients.”

Van Zyl recommends that the national risk-based shared-care programme be incorporated into the national cancer plan and in the proposed National Health Insurance plan that aims to provide universal healthcare for all South Africans.

She emphasises the need for funding of such a programme and education about late effects and the benefit of long-term follow-up care already when cancer is first diagnosed.