by Dr. Ronald Barr
There is growing recognition that adolescents and young adults (AYA) with cancer are a distinct population with respect to their development and psychosocial needs, the spectrum and biology of their malignant diseases, and their forced fit within the currently dichotomized (adult and pediatric) health care system. These realities provide challenges for optimal health care delivery as well as opportunities in the realms of education and research1,2.
In the UK, stimulated by the Teenage Cancer Trust (TCT), the National Institute for Health and Clinical Excellence (NICE) has described a strategy for “Improving Outcomes for Children and Young People with Cancer”3 that provides recommendations on service provision based on the best available evidence. It is aimed at both health care administrators and providers of clinical service. Likewise, in Australia the federal government invested $15 million in 2007 to develop a network of multi-disciplinary Youth Cancer Services across the country4.
To address these challenges in Canada, a National Task Force (NTF) on Cancer in Adolescents and Young Adults (AYA) was established in 2008, following a proposal on behalf of C17 – the consortium of all hematology-oncology programs in children’s hospitals in Canada – to the Canadian Partnership Against Cancer (CPAC). In its second mandate CPAC renewed its funding of the NTF that is co-chaired by Drs. Ronald Barr (Hamilton), Paul Rogers (Vancouver) and Brent Schacter (Winnipeg) and headquartered at McMaster University in Hamilton.
The NTF has held two international workshops in Toronto. The first, in March 2010, produced a composite proceedings, published as a supplement to Cancer5, and a series of recommendations that were published in the first issue of a new journal devoted to AYA oncology6, paralleling the Progress Review Group in the United States convened uniquely by the National Cancer Institute and the (then) Lance Armstrong Foundation7. The second workshop, held in March 2012, developed a Framework for Action to advance the field of AYA oncology in Canada.
Although the overall survival rate at 5 years for 15 – 29 year olds with cancer in Canada (excluding Quebec) is 83%8, as it is in Ontario9, cancer remains the most common cause of disease-related death in this age group in whom more than 2000 cases of cancer occur annually 8,10. There are numerous reasons cited for lack of further progress; those that are modifiable include delay in the recognition/ reporting of symptoms, limited compliance of AYA with therapeutic regimens, locus of care and low accrual to clinical trials9.
As the working groups of the NTF examined elements of the cancer experience for AYA – such as psychosocial needs (including measurement of distress), and long-term follow-up, so it was recognized that changes to the currently sub-optimal delivery of care to this population would have to be effected at the provincial/ territorial level. This has led to the establishment of Regional Action Partnerships (RAPs). To date six RAPs have been established – British Columbia/ Yukon; Alberta/ North-West Territories; Manitoba/ Nunavut; Ontario; Quebec; Atlantic Provinces. The Ontario RAP has four main partners, all of whom have representation on the steering committee:
- Cancer Care Ontario (CCO)
- Canadian Cancer Society, Ontario Division
- Pediatric Oncology Group of Ontario (POGO)
- Ontario Institute for Cancer Research
In addition, there is representation from medical oncology, radiation oncology, nursing, social work, survivors and advocates.
Among the six goals and six strategic priorities in the Ontario Cancer Plan III, the majority is applicable to AYA with malignant disease and aligns closely with the objectives of the Ontario RAP (Table 2). CCO has made important contributions to AYA oncology, including a disease classification system designed specifically for this age group11. Not only has this been adopted for the provision of annual Canadian Cancer Statistics8, but it has been accepted for use in the SEER program in the USA. Another example of collaboration between the adult (CCO) and pediatric (POGO) cancer communities in Ontario is in the development of a framework of quality indicators for the childhood cancer system12,13 modeled on the Cancer Quality Index for adults. This framework will allow the construction of a “balanced scorecard” and is being offered to C17 for use nationally.
The first working groups established by the NTF and the Ontario RAP are focused on oncofertility, consistent with the priority assigned to this topic by the NTF in collaboration with Assisted Human Reproduction Canada, an agency of the Federal Government. Moreover, preservation of fertility is a high priority for young people with cancer. 14 Members of these working groups undertook national surveys15,16 of the availability and utilization of fertility preservation services in Canada. Fewer than 80 facilities were identified and only 29 actually provided fertility preservation (the remainder engaged in counselling only). Despite the existence of clear guidelines by the American Society of Clinical Oncology17, updated in 201318, the number of referrals by oncologists to fertility preservation services was disappointingly low. There are numerous reasons suggested for this deficit, some of which are listed in Table 1. Yet a wide range of fertility preservation options is available in Canada (Table 2). In addition, members of these working groups have contributed to the imminent adoption of recommended practice guidelines in oncofertility by the Canadian Fertility and Andrology Society and to a series of position papers on this subject in Current Oncology19-22.
Even among cancer survivors who did not undertake formal fertility preservation, successful parenthood may occur. The low rate of utilization of cryopreserved semen (about 15%) reflects, in part, the recovery of spermatogenesis in some men after treatment for cancer23 and successful pregnancies may occur in young female survivors despite apparently diminished ovarian reserve24. Nevertheless, there is a clear need to “up our game” by ensuring that all young people with cancer are offered a consultation with a specialist in fertility preservation. Appropriate metrics must be adopted to measure the success of interventions designed to improve the rates of referral. These should include the numbers of procedures undertaken – sperm cryopreservation, oocyte retrieval with IVF/ egg freezing etc.
Achieving greater access to fertility preservation for young people with cancer will require a multi-pronged approach. This will include incorporation of oncofertility in curricula of training programs for oncologists and allied health professionals in oncology. Not least, there needs to be a concerted effort to address the high costs of fertility preservation by a consortium of stakeholders – cancer survivors and their advocates, philanthropic organizations, relevant members of the insurance industry, provincial cancer agencies and ministries of health.
The high survival rates and potential years of life saved in AYA with cancer should be matched by optimization of the quality of life in survivorship, of which fertility and parenthood are important elements.
- Bleyer WA, Barr RD (eds). Cancer in Adolescents and Young Adults. Heidelberg, Springer 2007.
- Bleyer A, Barr RD, Ellis C, Hayes-Lattin B, Anderson B. The distinctive biology of cancer in adolescents and young adults. Nature Rev Cancer 2008; 8: 288-298.
- Guidance on Cancer Services. Improving Outcomes in Children and Young People with Cancer. National Institute for Health and Clinical Excellence. London, 205.
- Osborn M, Little C, Bowering S, Orme L. Youth cancer services in Australia: Development and implementation. J Adolesc Young Adult Oncol 2013; 2: 118-124.
- Barr R, Rogers P, Schacter B (eds). Adolescents and young adults with cancer. Towards better outcomes in Canada. Cancer 2011; 117: 2239-2354.
- Fernandez C, Fraser GAM, Freeman C et al. Principles and recommendations for the provision of health care in Canada to adolescent and young adults – aged cancer patients and survivors. J Adolesc Young Adult Oncol 2011; 1: 53-59.
- Adolescent and Young Adult Oncology Progress Review Group. Closing the gap: research and care imperatives for adolescents and young adults with cancer (NIH Publication No. 06 – 0607). Bethesda MD: Department of Health and Human Services, National Institutes of Health, National Cancer Institute, and the LIVESTRONG Young Adult Alliance; 2006.
- Canadian Cancer Society’s Steering Committee: Canadian Cancer Statistics 2009. Toronto: Canadian Cancer Society 2009.
- Furlong W, Rae C, Greenberg ML, Barr RD. Surveillance and survival among adolescents and young adults with cancer in Ontario, Canada. Int J Cancer 2012; 131: 2660-2667.
- De P, Ellison LF, Barr RD et al. Canadian adolescents and young adults with cancer: opportunity to improve co-ordination and level of care. CMAJ 2011; 183: E187 – E194.
- Barr RD, Holowaty EI, Birch JM. Classification schemes for tumors diagnosed in adolescents and young adults. Cancer 2006; 106: 1425-1430.
- Bradley NME, Robinson PD, Greenberg ML et al. Measuring the quality of a childhood cancer care delivery system: Quality indicator development. Value Health 2013: 16: 647-654.
- Bradley NME, Robinson PD, Greenberg ML et al. Measuring the quality of a childhood cancer care delivery system: Assessing stakeholder agreement. Value Health 2013; 16: 639-646.
- Loscalzo MJ, Clark KL. The psychosocial context of cancer-related infertility. Cancer Treat Res 2007; 138: 180-190.
- Yee S, Buckett W, Campbell S, Yanofsky RA, Barr RD. A national study of the provision of oncofertility services to female patients in Canada. J Obstet Gynecol Can 2012, 34: 849-858.
- Yee S, Buckett W, Campbell S, Yanofsky RA, Barr RD. A national study of the provision of oncology sperm banking services among Canadian fertility clinics. Eur J Cancer Care 2013; 22: 440-449
- Lee SJ, Schover LR, Partridge AH et al. American Society of Clinical Oncology recommendations on fertility preservation in cancer patients. J Clin Oncol 2006; 24: 2917- 2931.
- Loren AW, Mangu PB, Beck LN et al. Fertility preservation for patients with cancer: American Society of Clinical Oncology clinical practice guideline updates. J Clin Oncol 2013; 31: 2500-2511.
- Ronn R, Holzer HEG. Oncofertility in Canada: the impact of cancer on fertility. Curr Oncol 2013; 20: e 345-e 348.
- Ronn R, Holzer HEG. Oncofertility in Canada: an overview of Canadian practice and suggested action plan. Curr Oncol 2013; 20: e 465-e 474.
- Ronn R, Holzer HEG. Gonadal protection and fertility sparing strategies. Curr Oncol 2013; 20: e602-e607.
- Ronn R, Holzer HEG. Oncofertility in Canada: Cryopreservation and alternative options for future parenthood. Curr Oncol – in press.
- Dohle GR. Male infertility in cancer patients: Review of the literature. Int J Urol 2010; 17: 327-331.
- Dillon KE, Sammel MD, Ginsberg JP, Lechtenberg L, Prewitt M, Gracia CR. Pregnancy after cancer: Results from a prospective cohort study of cancer survivors. Pediatr Blood Cancer 2013; 60: 2001-2006.
Barriers to Success
- Lack of knowledge and comfort among health care professionals
- Sexual immaturity of patients
- Insufficient educational material available
- Restricted opening hours of fertility preservation clinics
- Adolescent unfriendly facilities
- Costs of collection, processing and storage
Table 2 – download PDF
Ronald D. Barr is a pediatric cancer specialist known locally, nationally and internationally for his work in the field of pediatric oncology, as co-author and author of seven books and more than 250 scientific articles. He received his medical degree from the University of Glasgow and is a fellow of the Royal College of Physicians and Surgeons of Glasgow, the Royal College of Physicians (UK), the American College of Physicians, the Royal College of Physicians and Surgeons of Canada, the Royal College of Paediatrics and Child Health, and the Royal College of Pathologists (Hematology).
Following his training in internal medicine and hematology Dr. Barr joined the Faculty of Medicine at the University of Nairobi as part of an arrangement with the UK government to establish the first medical school in Kenya. He then joined the faculty of the University of Aberdeen before moving to the National Cancer Institute in Bethesda, MD as a visiting scientist.
Since 1977 he has been at McMaster University, now as a professor of pediatrics, pathology and medicine in the Michael G. DeGroote School of Medicine, and was for 30 years chief of hematology-oncology at McMaster Children’s Hospital.
Dr. Barr¹s main professional interests are international health, particularly relating to cancer in childhood; late effects of cancer treatment, especially on bone health and body composition; and measurement of health-status and health-related quality of life (as a co-developer of the Health Utilities Index).
Dr. Barr is one of the editors of the first definitive document on the incidence, survival and mortality of 15 to 29 year-olds with malignant disease. Funded by the National Cancer Institute (NCI) in the United States, this monograph was a co-operative venture between the Children’s Oncology Group (all 17 pediatric oncology centres in Canada and more than 200 American institutions) and the SEER (Survival Epidemiology and End Results) program. Dr. Barr also co-edited, with Dr. Archie Bleyer, the first textbook on Cancer in Adolescents and Young Adults, published in 2007.
Dr. Barr is a member of the NCI and Lance Armstrong Foundation’s Progress Review Group whose purpose is identifying and prioritizing the scientific, medical and psychosocial barriers facing adolescent and young adult (AYA) cancer patients, while developing strategies to overcome these obstacles. He is also co-chair of the Canadian national task force on AYA oncology.