The challenge of serving a unique population
Michael Palumbo, MD, PhD, Petr Kavan, MD, PhD, David Roberge, MD, Thierry Muanza, MD, Sabrina R. Perri, PhD, and Gerald Batist, MD
Progress in pediatric oncology has been among the most dramatic stories in modern medicine. In contrast, survival rates for adolescents and young adults (AYA) with cancer plateaued in the late 1970s. Reasons for this are not fully understood and may include differences in the biology of the cancers, poor understanding of host and tumour physiology, poor enrollment into adult and pediatric clinical trials, and lack of AYA-specific clinical trials. Further, AYA patients suffer from frequent loss to followup, delayed diagnosis and poor treatment compliance. To address these issues, in 2003 McGill University created an AYA oncology program with a corresponding patient registry. After five years in existence the program has achieved increased enrollment into clinical trials (including AYA-specific trials), along with reduced loss to followup. The program has also facilitated tumour banking and the implementation of psychosocial and rehabilitation services crucial to this population. We describe ongoing challenges that will likely affect attempts to establish similar programs elsewhere, and propose possible solutions to these challenges: lack of awareness of the unique therapeutic, psychosocial and rehabilitation needs of this population, the paucity of available clinical trials and the reluctance of some clinicians to refer patients to the program. As we learned with pediatric oncology, improved outcomes in the AYA population will require centralization of AYA oncology programs, along with interprovincial and international cooperation.
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