Rosemary Harrup, Antoinette Anazodo, Katherine Thompson, Marianne Phillips, Michael Osborn, Victoria White, Michael Coory, Rachel Conyers, Gemma Skaczkowski, Helen Bibby, Wayne Nicholls, Ross Pinkerton, Lisa Orme, Skaczkowski, G, White, V, Thompson, K, Bibby, H, Coory, M, Pinkerton, R, Nicholls, W, Orme, LM, Conyers, R, Phillips, MB, Osborn, M, Harrup, R, and Anazodo, A
Purpose A cancer diagnosis and treatment may have significant implications for a young patient's future fertility. Documentation of fertility-related discussions and actions is crucial to providing the best follow-up care, which may occur for many years post-treatment. This study examined the rate of medical record documentation of fertility-related discussions and fertility preservation (FP) procedures for adolescents and young adults (AYAs) with cancer in Australia. Methods A retrospective review of medical records for 941 patients in all six Australian states. Patients were identified through population-based cancer registries (four states) and hospital admission lists (two states). Trained data collectors extracted information from medical records using a comprehensive data collection survey. Records were reviewed for AYA patients (aged 15–24 years at diagnosis), diagnosed with acute myeloid leukaemia, acute lymphoblastic leukaemia, central nervous system (CNS) tumours, soft tissue sarcomas (STS), primary bone cancer or Ewing's family tumours between 2007 and 2012. Results 47.2% of patients had a documented fertility discussion and 35.9% had a documented FP procedure. Fertility-related documentation was less likely for female patients, those with a CNS or STS diagnosis and those receiving high-risk treatments. In multivariable models, adult hospitals with an AYA focus were more likely to document fertility discussions (odds ratio[OR] = 1.60; 95%CI = 1.08–2.37) and FP procedures (OR = 1.74; 95%CI = 1.17–2.57) than adult hospitals with no AYA services. Conclusions These data provide the first national, population-based estimates of fertility documentation for AYA cancer patients in Australia. Documentation of fertility-related discussions was poor, with higher rates observed in hospitals with greater experience of treating AYA patients.