Abstract
The Canadian Partnership Against Cancer (CPAC) and the consortium of Canadian pediatric oncology centers (C17 Network) formed the Canadian Task Force on Adolescents and Young Adults with Cancer in 2008. The mission of this task force includes identifying, evaluating, and implementing strategies to improve oncology-related healthcare in Canada for AYAs with cancer. To begin to address these goals, a survey was conducted of all Canadian pediatric and adult cancer centers to document the current practices and resources available to AYAs with cancer.
Methods
A four-page questionnaire was developed regarding AYA cancer care in Canada. There were slightly different versions for pediatric and adult centers, which took into account the different patient populations. This was an English-language-only questionnaire although respondents were given the option to reply in French.
The questionnaire included items regarding referral patterns, treatment practices, challenges around diagnosis and treatment, AYA-dedicated resources and services, and the presence of collaborative initiatives between pediatric and adult centers. The authors sought to determine the nature and extent of collaboration between pediatric and adult centers located in the same geographical area, as there was a sense amongst task force members, based on their own clinical experience, that very little collaboration existed and that improving this collaboration would likely result in improved patient care. Types of collaborative initiatives that were asked about in the survey included: the presence of combined tumor boards, combined AYA clinics, cross-appointed staff, combined educational sessions, AYA fellowship-level clinical rotations, collaborative research projects, a program of transition from pediatric to adult centers, any other initiatives, or no initiatives at all.
For the questions referring to the challenges of treating AYAs with cancer, respondents were asked to rate several challenges provided when treating AYA compared to their other patients (younger patients in pediatric centers and older patients in adult centers). They were asked to rate various options as “not important at all,” “not very important,” “somewhat important,” or “very important.” These responses were then ranked using an index score.
Resources that the survey specifically asked about were the availability of AYA-specific programs, materials, space, educational sessions, and services. Questions about staff included the presence of various professionals with special expertise or interest in AYAs such as oncologists, nurses, psychosocial support staff, and patient advocates. The survey design provided specific options for resources and staff; respondents were required to indicate whether these were available at their respective center.
A pilot test of the questionnaire was conducted with four colleagues from the pediatric and adult oncology communities. The questionnaire was then sent to all Canadian centers and facilities that provide cancer care to AYAs. Questionnaires were sent to 16 pediatric centers and 48 adult centers. Eighteen of the 48 adult centers and 4 of the 16 pediatric centers were in Quebec. A list of facilities that treat cancer patients was generated from the C17 Network (representing all Canadian pediatric centers), the Canadian Association of Provincial Cancer Agencies (CAPCA, representing adult centers in all provinces except Quebec), and from “La lutte contre le cancer” (representing adult centers and programs in Quebec). No online survey option was provided, as the authors wanted a consistent method of survey response.
The survey was sent to the head of each center with a request for him or her to identify the person at their center best qualified to provide the information needed to complete the questionnaire. Furthermore, instructions in the questionnaire booklet asked that the person selected to complete the questionnaire consult with colleagues, as needed, in order to provide the most complete information possible. A postage-paid, self-addressed return envelope and a fax number provided two options for return of the completed survey. A follow-up strategy based on the guidelines of Dillman, Edwards, and Burns was followed in order to maximize the response rate.5–7 Our method consisted of a $5.00 gift certificate, a cover letter covering key points identified by Dillman, 5 repeat mailing of the questionnaire to non-respondents, and email reminders when addresses were available.
Results
Respondent demographics
We received a completed survey from all 16 pediatric centers and 25 of the 48 adult cancer centers. Of the 25 adult centers that responded, only three were from Quebec. All pediatric centers and two-thirds of adult centers were reported as being affiliated with a university. A pediatric oncologist completed the survey at each of the pediatric centers. For the adult centers, the questionnaire was completed by a range of individuals: 18 medical or radiation oncologists, four oncology nurses, and two senior administrators. One respondent did not indicate his/her position.
Formal collaborative initiatives
The results, summarized in Figure 1, show that for most types of initiatives, a greater proportion of pediatric centers had collaborative initiatives compared to adult centers. None of the collaborative initiatives outlined in the Methods section were present in more than half of either pediatric or adult centers. There were conflicting reports from geographically linked pediatric and adult centers in some instances (see Discussion). The total number of collaborative initiatives in adult centers ranged from five initiatives in one center (4%) to no initiatives in 15 centers (60%). For pediatric centers, the total number of collaborative initiatives ranged from four initiatives in two centers (13%) to none in five centers (31%).
Percentage of AYA collaborative initiatives between pediatric and adult cancer centers in Canada.
Institutional age limits at diagnosis
Of the 15 pediatric centers that were reported as having an upper age limit for accepting new patients, the upper age limit was 17 or 18 years of age (n=12) or greater than 18 years of age (21–30 years, n=3). In order to assess the flexibility of these age limits, pediatric centers were asked whether they had accepted any new patients who were above the institutional age limit within the past year. Seven of the 15 pediatric centers that had an upper age limit reported starting treatment above their center's age limit; of these, five reported facing challenges when doing so. The main challenges described for these centers included hospital rules and policies, getting other specialties to see the patient, and getting the patient seen in the emergency department.
Of the 22 adult centers who responded to the question, eight reported no lower age limit for accepting new patients. In the remaining 14 centers, the lower age limit in years was 15 (n=1), 16 (n=3), 17 (n=2), or 18 (n=8). Eleven of the 24 adult centers who responded to the question stated that they had started active treatment for a newly diagnosed patient below the age of 17 in the previous year. Five of these 11 centers reported experiencing no challenges treating these patients. Those adult centers that did report facing challenges when treating patients under the age of 17 mentioned that the main challenge was staff's lack of comfort in providing age-appropriate medical and psychosocial support. In contrast to the pediatric centers, none of the adult centers reported experiencing institutional barriers such as hospital rules and policies.
Transition from pediatric to adult care
Fourteen of the 16 pediatric centers reported retaining patients on active treatment to complete therapy even after a patient had reached the center's upper age limit. At the remaining two centers, patients were usually given the option of completing treatment at the pediatric center or being transferred to an adult center. None of the centers reported automatically transferring patients to an adult center upon reaching the age limit. At the time of cancer relapse, 9 of the 16 pediatric centers reported they usually transfer over-aged patients to an adult center, four reported they usually retain patients at their pediatric center, and three reported they usually give patients the option to receive treatment at their center or be transferred to an adult center. No pediatric center reported treating patients who have adult-type cancers at their center without consulting an adult specialist.
Challenges of treating AYAs
Pediatric centers were asked what aspects they found more challenging in the treatment of AYAs with cancer compared to treating younger patients. The following were ranked from most to least challenging: poorer treatment compliance and adherence to follow-up care; the need to consider shifting roles within families; less evidence for age-specific prognosis or treatment efficacy; and communication issues related to AYAs' cognitive and developmental stage. In contrast, adult centers described the following challenges when treating AYAs with cancer compared to older patients (from most to least challenging): communication issues related to cognitive developmental stage tied first in rank with the need to consider shifting roles within families; poorer treatment compliance and adherence to follow-up care; and less evidence for age-specific prognosis or treatment efficacy.
Professional AYA cancer expertise
Informants were asked if their center had staff with a special interest or expertise in AYA cancer (Fig. 2). This question referred to self-nominated interest, not necessarily requiring any specialized training. Oncologists with an AYA focus were available in more than 80% of pediatric and 50% of adult centers. Half of adult and pediatric centers also identified social workers who were available for this population. However, only a minority of centers, both pediatric and adult, had other healthcare personnel such as nurse specialists, psychologists, psychiatrists, and patient advocates.
Percentage of healthcare professionals with special expertise or interest in AYA cancer at Canadian pediatric and adult cancer centers.
AYA cancer resources
Both adult and pediatric centers generally lacked specific AYA cancer resources. None of the resources listed in the questionnaire were available in the majority of centers. The only programs available in more than 25% of centers were AYA-specific programs to help with school-related issues (in pediatric centers) and AYA-specific health education materials and counseling with an AYA focus for families and individuals (in adult centers). Moreover, the distribution of resources that did exist varied between pediatric and adult centers (Table 1).
Discussion
It is broadly recognized that AYA cancer patients comprise a complex and diverse group with varying levels of developmental maturity, and consequently unique and largely unmet clinical and psychosocial needs.8–10 Although specific AYA cancer programs have been developed in some countries—most notably in the United Kingdom, United States, and Australia—these have not been rigorously and systematically evaluated.11–13 This may be due to the relatively short amount of time that most have been in existence and therefore available data may be limited. Consequently, an “optimal” AYA model of care has not been defined and the evidence supporting recommendations for active therapy and supportive healthcare delivery remain primarily at the level of “expert opinion.” 14
To the authors' knowledge, this is the first study assessing the availability of AYA-focused resources and staff for this group of oncology patients at a national level. The most striking finding of this study is the lack of focused interventions at both pediatric and adult oncology centers for the care of AYAs with cancer in Canada. Moreover, the lack of collaboration between pediatric and adult oncologists, who both share this group of patients, is concerning. Combined clinics and educational sessions, which would result in “cross-pollination” of ideas, are absent in the vast majority of centers. The information obtained is novel and is meant to provide an overview of the national landscape. The lack of any previous similar studies in either Canada or abroad suggests that this oversight is both a national and an international issue.
Limitations of the Study
Typical of most papers reporting on surveys, the current study has several limitations. While the response rate from all pediatric centers in Canada and adult centers outside Quebec was very good, the response rate from adult centers in Quebec was low. Possible reasons for the low response rate in Quebec could be that the questionnaire was only available in English and/or that, unlike the other Canadian provinces, Quebec does not have a central cancer agency, so individual services or departments may have been less motivated to respond.
Another limitation was that all pediatric center responses were completed by pediatric oncologists, while responsibility for completing the adult centers' survey was distributed among a variety of disciplines. We requested the survey be completed by the person best qualified to provide the information requested and for that respondent to confer with others when completing the survey, but it is unclear to what extent this was done. Despite our attempts at verifying the face validity of the survey, the variation in professionals responding may have also contributed to differences in item interpretation.
A further limitation was that some questions were open to interpretation, which may have had some influence on the study's accuracy. For example, one adult center stated they had a combined AYA clinic with adult and pediatric oncology staff; however, the reciprocal pediatric center stated they had no combined AYA clinic initiative. This discrepancy may be due to differences in the interpretation of what constituted a “combined AYA clinic.”
In addition, differences in the structure of pediatric centers may not have been adequately captured by the survey. For example, some pediatric hospitals were stand-alone centers, whereas others are physically situated within adult hospitals.
Finally, the questionnaire on which the study was based did not include questions about research practices and resources for AYAs with cancer. Questions such as ones asking about the extent of AYA enrollment onto cancer clinical trials or whether translational research on AYA-predominant tumor types was being undertaken at specific centers would have broadened the scope of the study.
Even with the limitations described above, the reported availability of AYA-focused oncology services and resources was so low that even if this survey underestimated resource availability, the error in measurement is unlikely to be so large that it would change the overall conclusion—AYA-focused oncology services and resources in Canada is limited.
Conclusions and Future Directions in the Field of Study
This survey has identified a lack of adolescent and young adult-dedicated resources among, and collaboration between, pediatric and adult cancer centers in Canada. Due to the diversity of institutional structures and policies, staff availability, and patient volume across the country, as well as geographical and provincial differences, centers may need to adopt varying models of enhancing AYA care best suited to their individual needs and constraints. Nonetheless, closer collaboration between medical and pediatric oncologists is required to address the challenges identified regarding treatment, transition, and psychosocial supportive care. This collaboration may translate into improved clinical outcomes, improved quality of life for AYAs, and enhanced patient satisfaction with care, which will require further prospective study. A more long-term goal in service delivery could be the creation of AYA oncology as a distinct sub-specialist discipline, similar to bone marrow transplantation and neuro-oncology.
Footnotes
Acknowledgments
We would like to acknowledge the following former and current members of the Canadian Task Force on Adolescents and Young Adults with Cancer for their contributions to this study: Drs. Karen Goddard, Ronald Barr, Paul Rogers, Brent Schacter, Simon Sutcliffe, Gerald Batist, Geoff Cuvelier, Conrad Fernandez, Graeme Fraser, Eva Grunfeld, Melanie Keats, Lisa Kramer, Paul Nathan, Sheila Pritchard, and Krista Wilkins, and Annette Penney and Ashley Turner. We would also like to acknowledge Cynthia Ackland for her assistance as research coordinator, and Melissa Morrison for her editorial support.
Author Disclosure Statement
No competing financial interests exist.