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More than 80% of children who have been recently diagnosed with cancer will survive for five years or more. A majority of these survivors are at risk for developing one or more long-term sequelae of their therapy. Thus, they all require specialized medical care that is focused on their specific risks.
A survey of informants from all 17 paediatric cancer programs in Canada was conducted to determine the care offered to survivors of childhood cancer, both during their paediatric and adolescent years, as well as after they transition to adulthood.
Sixteen informants representing all 17 centres responded to the survey by telephone or e-mail. Twelve of the 17 centres (71%) had a formal program or clinic dedicated to the care of survivors during their paediatric and adolescent years, while the remaining centres cared for survivors in their acute care oncology clinics. However, only six of 17 centres (35%) had access to a formal program for survivors once they reach adulthood. Fifteen of the 17 centres (88%) adhered to published long-term follow-up guidelines, and 13 of 17 centres (76%) provided a treatment summary and/or a survivorship care plan to each survivor before their transfer out of paediatric care.
Despite the centralization of paediatric oncology care within 17 specialist centres and the availability of universal health care, many Canadian survivors of childhood cancer do not have access to clinics specializing in long-term risk-based survivor care, and this access further decreases once they reach adulthood.
Plus de 80 % des enfants qui ont récemment reçu un diagnostic de cancer survivront au moins cinq ans. La majorité de ces survivants risquent d’acquérir au moins une séquelle à long terme de leur thérapie. Ils ont donc tous besoin de soins médicaux spécialisés axés sur les risques qui leur sont propres.
On a mené une enquête auprès des répondants des 17 centres d’oncologie pédiatrique du Canada pour déterminer les soins offerts aux survivants du cancer infantile, tant pendant leur enfance que leur adolescence, ainsi qu’après leur transition à l’âge adulte.
Seize répondants, représentant les 17 centres, ont répondu à l’enquête par téléphone ou par courriel. Douze de ces centres (71 %) disposaient d’un programme officiel ou d’une clinique voués aux soins des survivants pendant l’enfance ou l’adolescence, tandis que les autres s’occupaient des survivants dans le cadre de leur clinique d’oncologie. Cependant, seulement six des 17 centres (35 %) avaient accès à un programme officiel destiné aux survivants après qu’ils aient atteint l’âge adulte. Quinze des 17 centres (88 %) respectaient des lignes directrices de suivi à long terme, tandis que 13 (76 %) fournissaient un sommaire de traitement ou un plan de soins de survie à chaque survivant avant leur transfert hors des soins pédiatriques.
Malgré la centralisation des soins d’oncologie pédiatrique dans les 17 centres de spécialité et l’accessibilité aux soins de santé universels, de nombreux survivants canadiens au cancer infantile n’ont pas accès à des cliniques spécialisées dans les soins des risques à long terme des survivants, et cet accès diminue encore plus à l’âge adulte.
Survival of children recently diagnosed with cancer now exceeds 80% in Canada (1) and other industrialized countries. Consequently, the population of childhood cancer survivors has grown considerably over the past several decades, such that there are almost 300,000 survivors alive in the United States alone (2). As a result of their disease and its therapy, almost three-quarters of survivors will develop one or more chronic health conditions; in more than 40%, these sequelae will be severe or life-threatening (3). In response to this growing population and their considerable long-term risks, the Institute of Medicine of the National Academies (USA) has published a series of recommendations “to improve the health care and quality of life of survivors of childhood cancer” (2). These include the delivery of comprehensive, multidisciplinary follow-up care for all survivors, optimization of access to appropriate resources and care delivery systems, and the need for evidence-based clinical practice guidelines for the continuing care of these patients. However, in the United States, access to appropriate long-term care has been hindered by a paucity of programs focused on survivors (4), limitations in access to appropriate health insurance (5) and deficits in survivors’ knowledge about their long-term risks (6). This is often compounded by limitations in knowledge about specific risks among the primary care providers who care for many childhood cancer survivors. Once they reach adulthood, most survivors no longer receive regular care at a cancer centre, and only a minority receive care that is focused on the specific risks arising from their previous cancer treatment (7).
In Canada, most children with cancer are treated in one of 17 paediatric cancer programs. Access to care at a limited number of specialized institutions and the availability of universal health insurance for all Canadian residents might be expected to result in appropriate long-term care for all childhood cancer survivors. To examine the care offered to survivors of childhood cancer in Canada, both during their paediatric and adolescent years as well as after they transition to adulthood, a telephone survey was conducted to determine the services available for childhood cancer survivors in the 17 paediatric cancer centres. The present study was part of an environmental scan coordinated by the Survivorship Working Group of the Canadian Partnership Against Cancer, and was endorsed by the Canadian Council of Pediatric Hematology/Oncology Directors, which includes representatives from all 17 childhood cancer centres.
A telephone survey of informants from the 17 Canadian paediatric cancer centres was conducted between January and February 2008. The informants were all paediatric oncologists who were considered to have detailed knowledge of the cancer survivor services available at each of their centres. One informant represented two institutions. Respondents who were not available by telephone were sent copies of the survey questions by e-mail and requested to respond in writing. The survey consisted of open-ended questions regarding each institution’s resources for the care of survivors of childhood cancer during their paediatric and adolescent years. Questions addressed issues such as staffing, funding sources, criteria for entrance/discharge to survivor clinics, and the use of published treatment guidelines and treatment summaries. Additional questions addressed the availability of resources for the transition and care of adult survivors of childhood cancer. Responses to the survey by e-mail or telephone were considered to be indicative of the respondents’ consent to participate. Ethical approval for the study was received from the Research Ethics Board at the BC Cancer Agency (Vancouver, British Columbia).
Responses were obtained from 16 informants representing all 17 Canadian centres. Twelve were interviewed by telephone and the remaining four responded by e-mail. Twelve of the 17 centres (71%) had a formal program or clinic dedicated to the care of survivors during their paediatric and adolescent years. The remaining five centres continued to provide follow-up to survivors in their acute care oncology clinics, but did not have a program or clinic specifically for survivors. Of the 12 formal survivor clinics, nine (75%) accepted survivors once they were two or more years from the completion of their cancer treatment. Criteria for program entry in the remaining three clinics ranged from six months to five years from the end of treatment. Two centres offered transition programs for children who had completed therapy within the past two years, but were not yet eligible for entry into their survivor program.
Most programs were staffed by a combination of paediatric oncologists and nurses. Only two programs had a nurse practitioner. A minority of the programs employed other allied health professionals (eg, social worker, clinical psychologist, neuropsychologist, dietitian, etc). Elsewhere, these professionals were consulted on an as-needed basis. Only one of the 12 programs housed their clinic in a separate building from the location of the acute care oncology clinic. Two further programs ran their survivor clinics on a different time or day from the acute oncology clinics, avoiding overlap among survivors and children currently receiving cancer treatment.
Fifteen of the 17 centres (88%) adhered to formal long-term follow-up guidelines. Twelve programs used the Children’s Oncology Group (COG, USA) “Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers” (8), although some programs had modified these guidelines (eg, some screening tests were performed less frequently to reduce the burden on survivors). All respondents reported incorporating counselling about preventative health care and self-management into the clinic visits (eg, maintaining a healthy weight, nutrition, physical activity, smoking, breast self-examination, sun-screen use, fertility and sexual issues).
Thirteen of the 17 (76%) centres provided a treatment summary and/or a survivorship care plan to each survivor before their transfer out of paediatric care. However, only six of 17 centres (35%) had access to a formal program for the long-term care of survivors once they reach adulthood. Five of these programs are in the province of Ontario where the Ministry of Health and Long-term Care provides funding for adult long-term follow-up programs in the five major metropolitan centres. Among those centres without access to a formal adult program, policies for adult survivors vary. In most cases, the timing of discharge from the clinic is flexible, depending on how complicated the survivor’s course has been and/or whether he or she has a family physician. Some clinics discharge survivors at 18 years of age or five years after admission to the clinic. However, some paediatric oncologists continue to follow adult survivors for cancer-related concerns while a family physician manages their preventative care. Other clinics keep survivors of all ages in the paediatric program because of the absence of resources for adults. Only one centre instituted a formal transition program to minimize the loss to follow-up of survivors once they reach adulthood. The transition program consisted of a 45 min orientation to the adult clinic, a 1 h talk by clinic staff and a dinner with the survivor clinic team. This resulted in a decrease in patients lost to follow-up, although the effectiveness of this transition program has not been formally evaluated.
Respondents identified numerous challenges to the provision of appropriate survivor care. Many emphasized the need for formal transition and adult survivor programs. All but one informant were interested in a pan-Canadian partnership that would promote communication, collaboration and the exchange of information and resources between centres. There is enthusiasm for the development of a national database of paediatric survivors, which would increase consistency in practice and make access to data easier should survivors move location within the country.
Our survey of all of Canada’s paediatric cancer treatment centres revealed that although all 17 centres recognized the importance of lifelong care for survivors of childhood cancer, only 12 had a formal paediatric survivor program and only six transferred patients to a formal adult survivor program. Despite the availability of universal health care and the concentration of all paediatric cancer treatment in 17 dedicated centres, Canada does not appear to offer access to survivor care that is superior to that of the United States. A questionnaire completed by 182 COG member institutions in the United States and Canada in 1997 revealed that 53% of programs had a paediatric survivor clinic at their institution and 44% had a mechanism for following adult survivors (4). More recent estimates of survivor resources are not available. The inadequacy of services for adult survivors is particularly concerning because the risk of late effects rises as survivors age (3). Respondents identified the absence of dedicated funding and infrastructure for adult late effects programs to be a major barrier to adult care. Only the Province of Ontario has a plan to provide seamless survivor care through the continuum from childhood to adulthood. The Ontario Ministry of Health and Long-Term Care has provided dedicated funding for five survivor programs in the major metropolitan centres in Ontario. It remains to be established whether adult survivors will seek care in dedicated long-term follow-up programs. A study (7) of 8522 survivors of childhood cancer (559 of whom were treated in Toronto, Ontario, with the remaining survivors receiving treatment in the United States) revealed that Canadian survivors were no more likely than American survivors who had health insurance to report receiving any medical care or medical care that focused specifically on their previous malignancy. Furthermore, the Canadian members of the cohort were less likely than their American counterparts to receive a recommended echocardiogram to detect treatment-related cardiac disease, and no more likely to receive a mammogram to detect breast cancer arising from previous radiation therapy to the chest in females.
Encouragingly, most Canadian programs in our survey reported that care of survivors is conducted according to established guidelines, most commonly those from the COG. However, one-quarter of the programs do not provide patients with a summary of their previous treatment and a survivorship care plan. This is concerning because a major barrier to survivors receiving appropriate care focused on their cancer-related risks is an absence of survivor knowledge about the treatments that they have received and the risks that arise from those therapies (9). Furthermore, because many survivors will be followed by general practitioners after discharge from their paediatric hospital, this lack of treatment information and a plan of follow-up can compromise their care because most general practitioners have limited knowledge about the specific risks faced by childhood cancer survivors (6).
The strengths of the current study include its complete capture of data from all 17 centres that treat children with cancer in Canada. It is limited by the absence of a structured process to assess the performance of cancer survivor programs – a challenge that has been noted in other studies of survivor resources (10). Additionally, we relied on the perceptions of individual respondents to describe their centres’ programs in detail. Although the respondents were selected on the basis of their intimate involvement with survivor care, we cannot verify the objectivity or accuracy of each response. Finally, we were not able to assess the importance of barriers to survivors’ attendance at long-term follow-up clinics. Potential barriers include socioeconomic factors (eg, employment, education and income), distance from the cancer centre and the degree of morbidity from the previous cancer and its therapy. Barriers to health care utilization among survivors is the focus of research by the North American Childhood Cancer Survivor Study (7), as well as by researchers in British Columbia and Ontario who are using health registry data to explore these issues.
All 17 Canadian paediatric oncology programs recognize the importance of ongoing care for childhood cancer survivors and the need for this care to be driven by established guidelines. However, limitations in resources, including funding, have constrained the ability of some programs to provide continuing care for survivors once they enter adulthood. These barriers need to be addressed at the national level. There is a real opportunity for Canadian paediatric oncology programs to collaborate on the creation of a national network of childhood cancer survivor programs. This could be coordinated through the existing network created by the Canadian Council of Pediatric Hematology/Oncology Directors and encouraged by the federally funded Canadian Partnership Against Cancer.
Funding for data collection and analysis of the survey were received from the Canadian Partnership Against Cancer and the BC Cancer Agency. The authors thank the 16 paediatric oncologists from Canada’s paediatric oncology programs who graciously responded to the survey, and also the members of the Survivorship Working Group of the Canadian Partnership Against Cancer for their help in creating and administering this survey.