Long-term follow-up of survivors of childhood cancer is patchy and in some cases held together with the goodwill of clinicians who volunteer their time.
The findings, from interviews with medical and nursing leads at 11 long-term follow-up clinics across Australia and New Zealand, suggest some survivors are missing out on the support they need to manage the sequelae of cancer and its treatment.
Associate Professor Richard Cohn, head of clinical oncology and long-term follow-up at Sydney Children’s Hospital, said the need for secure funding for such programs was increasing given the expanding group of survivors.
As well as being important for individual patients, long-term follow-up was important to inform future therapies.
“Long-term follow-up allows us to educate survivors on age-appropriate issues such as fertility or an increased risk of breast cancer in patients with Hodgkin disease who were treated with radiation to the chest wall.”
“It also provides the knowledge to be able to change therapies that are the greatest offenders in terms of late effects, which is cost effective for the whole health system.”
Associate Professor Cohn told the limbic Sydney Children’s Hospital was fortunate in being able to follow survivors without transitioning them to adult services.
“This allow us to learn about late effects over 10, 20 or even 30 years.”
Most clinics (6 of 11) reported discharging low risk survivors to primary care given the lack of appropriate adult services.
However ‘this requires that they are sufficiently informed to navigate the health care system, understand their need for surveillance and that their GP understands the needs of this unique population’, the study said.
Associate Professor Cohn said a survivor survey had found 34% do not have a regular GP, raising further concerns about adequate patient education and surveillance into the future.
He said lifestyle modifications such as a healthy diet, regular exercise, not smoking and sun safe behaviour could help reduce the risk of some late effects.
However high risk survivors were also likely to need the support of a large, multidisciplinary team including social workers, endocrinologists and cardiologists.
The study found clinicians were supportive of a nationwide structure including a national or bi-national database to support collaborative research and service provision.
He said the research was providing the evidence to help ANZCHOG and COSA advocate for better survivorship care.