Oral Presentation FCIC Survivorship Conference 2013

Morbidity and mortality in a hospital-based cohort of adult survivors of childhood cancer (#8)

Richard J Cohn 1 2 3 4 , Lesley Ashton 1 4 , Carmon E Wilson 1 4 , Karen Johnston 2 3 , Kristin Neville 1 2 , Claire E Wakefield 1 2 3
  1. School of Women's and Children's Health, University of New South Wales, Kensington, New South Wales, Australia
  2. Centre for Children's Cancer and Blood Disorders (CCCBD), Sydney Children's Hospital, Randwick, New South Wales, Australia
  3. New South Wales Cancer Survivor Centre, University of New South Wales, Kensington, New South Wales, Australia
  4. Children's Cancer Institute Australia, Lowy Cancer Research Centre, Kensington, New South Wales, Australia

Backgound: Establishing representative cohorts of individuals treated for childhood cancer is vital to enable characterisation of the long-term effects of cancer therapies, which often only become evident many years after treatment, with growth, and the normal aging process.

Method: Of 1198 patients resident in NSW who were treated at Sydney Children’s Hospital between 1972 and 1999, and followed for at least 5 years, 1156 were shown to be alive by cross-match with the National Death Index. 70.1% were successfully traced by linkage to public data-bases or their attendance at a Long-term Follow-up Clinic. Further data was obtained from medical records, the NSW Cancer Registry, patient self-report and prospective studies.

Results: Standardised mortality and incidence ratios were 7.46 and 4.98 times higher among survivors relative to the NSW population. Causes of death included primary cancer recurrence (55%), second cancers (12%), and treatment-related complications (17%). Sixty-two percent of survivors reported at least 1 chronic late effect and 27% reported ≥3.
Studies on the survivors have guided follow-up and have prompted changes to care of new patients. Avoidance of mantle irradiation for Hodgkin’s Lymphoma has translated into significantly fewer second malignancies. Long-term morbidities in stage 4 neuroblastoma patients conditioned for autograft with TBI have resulted in protocols without TBI. Knowing that 10/12 females treated with 24Gy cranial radiation failed to lactate after delivery, assists in counselling new mothers. 11% pubertal and 11% adult survivors studied had Impaired Glucose Tolerance /Diabetes Mellitus (vs 0 and 4.9% controls, p<0.001), highlighting the importance of follow-up and lifestyle education. Documentation of persisting psychological distress in survivors, parents and siblings many years after treatment, supports intervention in all family members to prevent ongoing psychological morbidity.

Conclusions: Adult survivors of childhood cancer experience life-threatening and life-altering late effects. Knowledge of late-effects informs risk-based follow-up and modification of new treatment protocols.