Barriers and Facilitators of Transition from Pediatric to Adult Long-Term Follow-Up Care in Childhood Cancer Survivors

Abstract

Purpose:

Despite the risk for late effects in adult survivors of cancer in childhood or adolescence, many survivors fail to transition from pediatric to adult long-term follow-up (LTFU) care. The purpose of this study was to identify the barriers and facilitators of transition from pediatric to adult LTFU care.

Methods:

In this qualitative study, 38 Canadian survivors of cancer in childhood or adolescence, currently aged 15–26 years, were interviewed using semi-structured, open-ended questions. Participants belonged to one of four groups: pre-transition (n=10), successful transition (n=11), failed to transition (n=7), and transitioned to an adult center but then dropped out of adult care (n=10). A constructivist grounded theory approach was used to analyze the interview data. This approach consisted of coding transcripts line by line to develop categories and using constant comparison to examine relationships within and across codes and categories. Interviewing continued until saturation was reached.

Results:

Three interrelated themes were identified that affected the transition process: micro-level patient factors (e.g., due diligence, anxiety), meso-level support factors (e.g., family, friends), and macro-level system factors (e.g., appointments, communication, healthcare providers). Factors could act as facilitators to transition (e.g., family support), barriers to transition (e.g., difficulty booking appointments), or as both a barrier and a facilitator (e.g., anxiety).

Conclusion:

This study illustrates the interaction between multiple factors that facilitate and/or prevent transition from pediatric to adult LTFU cancer care. A number of recommendations are presented to address potential macro-level system barriers to successful transition.

Children and adolescents diagnosed with cancer have more than an 80% chance of surviving their initial disease.¹ Contemporary cancer therapies place survivors at an increased risk for developing at least one chronic health complication from their therapy and one-third develop a late effect that is severe or leads to premature death.² Despite guidelines advocating regular medical visits focused on preventing or detecting late effects, only a minority of adult survivors of childhood cancer receive regular healthcare tailored to risks arising from their cancer treatment.³

The transition from pediatric to adult long-term follow-up (LTFU) care is a critical component of the process that affects survivors' LTFU clinic attendance. Literature addressing the needs of young adult survivors of cancer during their transition to care in an adult center is limited. A few studies have assessed barriers to transition in other chronic pediatric illnesses.^4–6 These studies identified barriers from the patient, parent, and healthcare provider (HCP) perspectives, including those related to provision of healthcare information, the healthcare facility, and patients' desire to have a “normal” disease-free life.^5,6 However, survivors of cancer differ from patients with other chronic diseases, since they are often physically well prior to their transition to adult care.³ Late effects may manifest many years after transition, by which point many survivors are lost to follow-up.

In Canada, approximately 880 children under the age of 15 are diagnosed with cancer annually.⁷ The province of Ontario has established a centralized model of lifelong medical care for survivors of childhood cancer with LTFU clinics in five major metropolitan centers. The medical care that survivors receive is provided without direct cost to the patient, eliminating health insurance as a barrier.⁸ However, based on our clinical experience, many survivors do not attend their first LTFU appointment as an adult or drop out of the adult LTFU clinic. We have previously described the psychological factors that impact transition success in this population.⁹ We also sought to explore and identify other non-psychological factors that act as facilitators and/or barriers to the transition process from pediatric to adult care in these specialized LTFU clinics, presented here.

Methods

Participants

The methods for this study were described in our previous publication assessing psychological factors that impact transition.⁹ Briefly, the study was conducted at a pediatric hospital (The Hospital for Sick Children in Toronto), an adult cancer center (Princess Margaret Hospital in Toronto), and a hospital that treats both children and adults (McMaster Children's Hospital, located within the McMaster University Medical Centre in Hamilton). These centers represent the two different models of LTFU care in Ontario. In the first model, at the age of 18, survivors transition from the pediatric LTFU clinic at the Hospital for Sick Children to the adult LTFU clinic operated by different personnel across the street at Princess Margaret Hospital. There is no formal transition program, although survivors are given a treatment summary, written information about the adult LTFU program, and the importance of successful transition is discussed in detail prior to transfer. In the second model at McMaster Children's Hospital, survivors remain in the same LTFU clinic throughout their pediatric and adult years. The clinic occupies a consistent physical space, and there is some continuity of staff once survivors turn 18, with the addition of others focused exclusively on LTFU (such as an adult nurse and a radiation oncologist; Fig. 1).

FIG. 1.

Two examples of models of long-term follow-up care for survivors of childhood cancer in Ontario, Canada. Note: The healthcare team lists representative personnel, the lists are not exhaustive. LTFU, long-term follow-up care.

We conducted interviews with pediatric and adolescent cancer survivors between September 2009 and October 2011 using a constructive grounded theory approach.¹⁰ A sample was recruited that included patients who varied in terms of type of cancer, age at diagnosis, current age, and gender. Our recruiting strategy ensured representation from four transition groups: pre-transition (adolescent-aged survivors currently attending a LTFU clinic at a pediatric center), successful transition (attends LTFU for a continuous period of 3 years after either turning 18 or being transferred to an adult LTFU program), failed to transition (never attended a LTFU appointment in an adult center or after 18 years of age), or dropped out of transition (attended at least one appointment in an adult center or after 18 years of age but failed to attend LTFU for a continuous period of 3 years). We included pre-transition participants in order to understand expectations, education, and preparation related to transition. All patients were at least 2 years post-treatment, spoke English, and had no severe cognitive deficits.

Procedure

Research Ethics Board approval was obtained from each participating hospital. The treating team contacted eligible survivors by telephone to schedule an in-person or telephone interview. In-person interviews took place at locations that were accessible for participants such as their homes, hospital meeting rooms, or other locations (e.g., coffee shops). Interviews began with obtaining informed consent. All interviews were digitally recorded and transcribed verbatim. The interviews were semi-structured and questions encouraged participants to discuss their cancer diagnosis, treatment, and transition process. Probes were used to ascertain survivors' perceptions of barriers and facilitators to transitioning from pediatric to adult LTFU care (Appendix 1, available online at www.liebertpub.com/JAYAO).

Data analysis

Analysis was inductive and involved line-by-line coding, with codes and categories developed from participant interviews. Coding was performed by three members of the research team (ZRSRY, LA, and LG), who discussed discrepancies, established consensus for codes from the first 10 transcripts, and created a preliminary codebook. The codebook was revised as the interviews progressed using an iterative process. Constant comparison was used to examine relationships within and across codes and categories and to recreate themes. Interviewing continued until saturation occurred (no new codes or categories were developed) within and across the four transition groups. QSR NVivo 8 was used to manage the data.¹¹

Results

Thirty-eight interviews were conducted. Characteristics of participants and recruitment details are presented in Tables 1 and 2.

Table 1.

Participants by Model of Care, Hospital Site, and Transition Group (N=38)

	Model 1 (Survivors transition from pediatric LTFU clinic to adult LTFU clinic)		Model 2 (Survivors remain at same site)
Group	Hospital for Sick Children	Princess Margaret Hospital	McMaster Children's Hospital	Total
Pre-transition Adolescent-aged survivors currently attending a LTFU clinic at a pediatric center	7	N/A^a	3	10
Successful transition Attends LTFU for a continuous period of 3 years after either turning 18 or being transferred to an adult LTFU program (frequency may vary as directed by an oncologist)	N/A^a	6	5	11
Failed to transition Never attended a LTFU appointment in an adult center or after turning 18	4	N/A^a	3	7
Dropped out of adult LTFU care after transition Attended at least one appointment in an adult center or after age 18, but failed to attend LTFU for continuous period of 3 years (frequency may vary as directed by an oncologist)	N/A^a	7	3	10

For Model 1, participants from the successful transition and dropped out transition groups were recruited from Princess Margaret Hospital (adult hospital) and participants from the pre-transition and failed to transition groups were recruited from the Hospital for Sick Children (pediatric hospital).

LTFU, long-term follow-up; N/A, not applicable.

Table 2.

Participant Characteristics: Age, Years Post-treatment, and Cancer Type

Characteristic	N=38 (%)^a
Age at study in years, median (range)	23 (16–26)
Age at diagnosis in years
0–7	26 (68)
8–12	9 (24)
13–18	3 (8)
Number of years post-treatment
6–9	10 (26)
10–13	4 (11)
14–17	10 (26)
18–21	7 (18)
22–25	7 (18)
Cancer type
Leukemia	14 (37)
Lymphoma	6 (16)
Neuroblastoma	5 (13)
Wilms' tumor	5 (13)
Sarcoma	4 (11)
Brain tumor	4 (11)

Percentages are rounded.

In the interviews, participants were asked to describe factors related to the transition process as a facilitator, barrier, or both. Some factors were identified as a facilitator by some survivors and a barrier by others (Table 3). We adapted the terms micro-, meso-, and macro for our themes from Bronfenbrenner's Ecological Systems Theory, as it captures the interrelatedness of social factors within a particular environment.¹² While this terminology has not been used in the transition literature, we think it demonstrates the manner in which the barriers and facilitators that emerged from our data interacted to facilitate and/or prevent transition. All barriers and facilitators were classified into the following three interrelated themes: micro-level patient factors, meso-level support factors, and macro-level system factors.

Table 3.

Summary of Factors Discussed by Participants That Act as Facilitators and/or Barriers to the Transition Process

	Facilitators	Barriers
Micro-level patient factors
Personal responsibility	• Going to LTFU care to ensure they remain healthy • Due diligence (concern with health)	• Believing there is no point to attending LTFU • Not willing to take the time to attend LTFU • Hearing only good news at appointments • Believing LTFU appointments are redundant, as they receive care from a general practitioner or specialist
Symptoms	• Having symptoms or experiencing late effects	• Having no late effects • Having a low-risk cancer or treatment
Anxiety	• Having cancer worries or fears	• Having no concerns about health • Experiencing a high degree of anxiety about cancer, reoccurrence, or death
Knowledge	• Having knowledge about the importance of LTFU care	• Having knowledge that their cancer had a good prognosis for survival and minimal rates of recurrence and late effects
Helping others	• Wanting to help others by participating in research through attending LTFU	N/A
Meso-level support factors
Family (e.g., parents and partners)	• Encouraging attendance through motivation or pressure • Parental worry • Offering practical support, such as transportation to appointments • Being at appointments for moral support	N/A
Friends	• Talking about importance of LTFU care	N/A
Cancer organizations	• Spending time with other survivors • Talking about the importance of LTFU with peers	N/A
Macro-level system factors
HCP team	• Having a familiar HCP team • Having a team that cares for all the patient's needs • Building close relationships	• Impersonal relationships with new HCPs • Concerns about new providers not understanding healthcare needs • Concerns about terminating old relationships with pediatric HCPs • Experiencing rushed and impersonal care
Environment	• Having a familiar and friendly environment • Seeing other cancer survivors who are their friends at appointments	• An environment that makes the survivors think about cancer and death
Communication	• Appropriate and timely communication regarding the importance of LTFU care • Receiving reminder calls about appointments	• Lack of or incorrect information given about the nature, frequency, and/or need for LTFU appointments • Miscommunication about receiving LTFU care
Appointments	• Easy process and flexibility when booking or rescheduling appointments • Being given the next appointment at a scheduled visit • Smooth transition from appointment to appointment • Coordinated appointments, such as arranging tests and specialist appointments on the same day	• Distance to the LTFU clinic • Having difficulty booking or rescheduling appointments • Lack of coordination between multiple appointments

HCP, healthcare provider; LTFU, long-term follow-up care; N/A, not applicable.

Micro-level patient factors

Participants discussed a number of factors related to their sense of personal responsibility, which acted as either facilitators or barriers to LTFU clinic attendance as an adult. An important facilitator cited was participants' diligence in maintaining their health. All participants in the successful transition group explained that their motivation for attending LTFU was to ensure that they stay healthy and disease-free:

I would come back and do that for however long it takes, or however difficult it is…Health is certainly…my main priority so that's motivation enough—to stay healthy. (Female, successful transition)

Some participants that failed to or dropped out of transition discussed being focused on the present. This group believed that there was “no point” in attending LTFU care because they currently felt healthy. In general, participants who experienced symptoms of late effects either attended LTFU appointments or were seeing specialists regularly to manage their symptoms. Absence of symptoms combined with the perception that a physician had confirmed their minimal long-term risk deterred some participants in the failed to and dropped out of transition groups from attending appointments:

There wasn't really much of a change…from year to year and…it just didn't really seem like there was a sense of urgency…I've been fine and healthy for over 20 years. (Female, dropped out of transition)

Related to the notion of due diligence was the degree of anxiety participants experienced, as described in our previous paper that focused on psychological factors impacting transition.⁹ Anxiety ranged from a healthy concern to a constant preoccupation with the risk for cancer recurrence, developing a new cancer, or death. Some participants reported that this fear prevented them from going to appointments, while it motivated others to attend their LTFU appointments.

Fear would be [a] motivational factor…When I was in ICU there was a ton of medications going through [me] so maybe [the] combinations of [medications] could cause problems. (Female, dropped out of transition)

As we previously described, the majority of participants had knowledge about the importance of LTFU care.⁹ Nonetheless, some participants whose less-intensive treatment placed them at lower risk for late effects chose not to attend LTFU appointments despite knowing the importance of LTFU:

I would be more diligent about it if I had undergone a cancer with a higher fatality rate or a cancer that required more heavy-duty chemotherapy for sure. (Female, dropped out of transition)

Most participants across the three hospitals remembered discussing late effects with a HCP during pediatric LTFU. However, the majority of participants could not recall the details of those discussions. Similarly, most participants recalled the types of treatments they had undergone but were often unable to remember treatment details, such as the specific drugs they received. This knowledge deficit was present across the four transition groups, but was most prominent in the dropped out of transition group.

Finally, some participants reported that they were motivated to attend LTFU for altruistic reasons, as they wanted to help others by adding to physicians' knowledge of late effects by providing an opportunity for longitudinal surveillance.

Meso-level support factors

Support and encouragement from parents, partners, and friends (with or without cancer) and involvement in cancer organizations played an important role in motivating participants in all four transition groups to attend LTFU. Most participants reported the integral role their parent(s) played in pediatric LTFU clinic attendance. Some participants explained that they attended pediatric LTFU appointments regularly because they “didn't really have a choice.” Not surprisingly, parents assumed much of the responsibility for their child's LTFU attendance, including booking appointments and driving them to the hospital. However, once participants became adults, parents generally became less involved in the details (e.g., appointment booking and travel) but remained interested in their child's health (e.g., called to ask about their LTFU appointments). Many adult participants discussed remaining in LTFU care because of parental worry and interest in their health. Only one participant reported that parental pressure to attend LTFU had no impact on their decision to attend. Some participants who failed to or dropped out of transition reported that increased parental and/or partner pressure motivated them to consider attending in the future. One failed participant explained why he was contemplating returning to LTFU attendance:

My girlfriend's really riding my ass about it getting back in [to LTFU as an adult]…because she wants peace of mind. (Male, failed to transition)

Some participants also discussed practical support received from their partners that facilitated attendance:

He drives [me] down…[be]cause I'm usually nervous. (Female, successful transition)

Cancer organizations also played a role in transition. Specifically, they provided a space (e.g., camp) in which survivors could discuss their experiences, including the importance of LTFU care. Some pre-transition and successful transition participants discussed the motivation they received from being able to talk to peers (both survivors and friends) about their LTFU appointments.

Macro-level system factors

A number of healthcare system factors acted as facilitators, barriers, or as both facilitators and barriers to LTFU clinic attendance. Many participants from both models of care discussed the importance of having a familiar and consistent HCP team that provided comprehensive care. Participants at McMaster Children's Hospital remain in the care of a similar team in the same clinic, while those at the Hospital for Sick Children are transitioned to the care of a different team at Princess Margaret Hospital (Fig. 1). Participants who did not see familiar faces at appointments (including other cancer survivors) or did not have the opportunity to establish close relationships with their HCPs in the adult LTFU clinic (as noted by some participants that transitioned to Princess Margaret Hospital) were less likely to transition successfully.

Participants in the dropped out of transition group felt that their healthcare needs were not being met at LTFU clinic appointments. Some viewed appointments as redundant given that they had a family doctor and/or a specialist taking care of them. Additionally, many participants from the successful and dropped out of transition groups reported feeling that their adult LTFU appointments were rushed and impersonal compared to their pediatric LTFU clinic experience at the Hospital for Sick Children. For a few participants, the impersonal experience deterred future attendance. As one participant shared:

That comfort level is not there…At [the Hospital for Sick Children], it was comfortable because I knew that doctor and I was able to share…personal stuff with him…[but] with [Princess Margaret Hospital] every time it's new people so you…don't have that relationship. (Female, dropped out of transition)

Communication difficulties regarding the nature, frequency, and/or need for LTFU appointments were discussed by some participants. Miscommunication was a common barrier described by individuals in both models that failed to or dropped out of transition. Some participants thought they were receiving general LTFU care when in fact they were seeing a specialist for a specific late effect (e.g., endocrinologist or cardiologist).

Participants in the dropped out of transition group from both models of care mentioned that travel distance to appointments was a barrier. In addition, all of the participants that had passed the transition point (the successful, failed to, and dropped out of transition groups) generally experienced difficulty with scheduling appointments in the adult LTFU clinic at Princess Margaret Hospital. Individuals in the successful transition group were generally persistent and made repeated attempts to reschedule, whereas individuals in the dropped out of transition group tended to give up after attempting to reschedule an appointment once or twice. One participant explained that he never attended LTFU clinics because of these difficulties:

We tried contacting people to book one [an appointment] but…we couldn't get a hold of anybody…so we kind of just…let it go. (Male, failed to transition)

Many participants described the ability to easily book or reschedule appointments, receive reminder calls about upcoming appointments, and have coordinated appointments (i.e., tests and specialist appointments on the same day) as facilitators of LTFU attendance.

Discussion

To date, research in the area of pediatric transition between clinics in oncology and other chronic diseases has been primarily exploratory and descriptive in nature.¹³ Chronic disease literature indicates that the plan for transition to adult services should address the medical, psychosocial, and educational and/or vocational needs of adolescents.^5,6,14 We have described facilitators and barriers to the transition process in terms of three overarching themes: patient factors, support factors, and system factors.

Differences in the culture of care (e.g., communication style, physical setting, and role of family members and peers) between pediatric and adult clinics are reported by individuals with chronic illnesses.¹⁵ A study by Wilson et al. demonstrated that adult cancer survivors “need new forms of flexible/responsive aftercare.”¹⁶ Our study further supports these findings, as demonstrated by our participants' difficulty in booking and rescheduling appointments within the current adult care system. Administrative support (e.g., assistance with appointment scheduling) is important in ensuring LTFU clinic attendance because unlike appointments during which therapy is given, a survivor that feels well may not perceive any urgency to receive care. Consequently, these survivors may change appointments more frequently or be more likely to miss a scheduled appointment. A relationship exists between the system and patient factors demonstrating that system-level communication affects LTFU clinic attendance. Participants in Model 1 of this study reported that the effort made at the Hospital for Sick Children to ensure they came to appointments facilitated their attendance. In contrast, the relative lack of effort to maintain patient adult LTFU clinic attendance was identified as a barrier. Patient retention might be improved in Model 1 when patients are transferred to the adult LTFU clinic by using an automated telephone, email, or text system. Adolescents and young adults, in particular, are more accustomed to electronic communication through methods such text messaging or social media platforms.^17,18 Moreover, consideration should be given to establishing programs that enable patients to easily book and reschedule their appointments. Administrative support to ensure efficient organization of appointments is critical for successful transition.¹⁹

Successful transition requires early planning and preparation of individuals to develop knowledge about their disease as well as the communication, decision making, and self-management skills needed to maximize life-long functioning.²⁰ Parents must also be educated about the transition process, since their role will evolve as the survivor becomes more independent.²¹ Additionally, survivors' and their parents' knowledge about their cancer, treatments, and risk of late effects are important contributors to successful transition.^22–26 Time should be taken to explain the difference between routine LTFU appointments and specialist appointments that address a specific late effect (e.g., cardiologist or endocrinologist). Survivors should understand that even if they are seeing a specialist, they still require routine LTFU care.

Two studies conducted in the United States have investigated the barriers to risk-based LTFU care in adult survivors of childhood and adolescent cancer.^24,25 Major barriers identified in these studies included survivors' lack of knowledge about their specific risks, lack of insurance, lack of training/education for physicians about the health problems of survivors, and the limited number of adult HCPs equipped to care for survivors. Important differences between our cohort and those enrolled in these studies include the fact that Canadians have a universal healthcare system and that Ontario-area survivors have access to specialized LTFU clinics for adult-aged survivors. Elsewhere in Canada, models for survivor care are more varied. In addition to the two Ontario models evaluated in this study, other models used in Canada include the transfer of care to a community-based primary care physicians and referral to an adult oncologist.²⁷

A major facilitator of LTFU attendance in our population was an individual's sense of responsibility to maintain their health. This finding is consistent with the literature, which reports that promoting personal responsibility and self-reliance is a fundamental principle of successful transition for chronic disease patients.^22,23 Our study demonstrated that the presence of family support can affect individuals' sense of responsibility for their own health. For example, having family and friends support survivors' LTFU clinic attendance was a facilitator to those already attending LTFU and a factor that could motivate those not attending to attend future appointments. We recommend involving each survivor's support network in the pre-transition education process.

Some factors were reported as both facilitators and barriers to adult LTFU attendance. Psychological barriers to transition can include avoidance, fear, and post-traumatic stress.²² Our study demonstrated that anxiety ranged on a spectrum from concern with one's health to being consumed with fear. Some participants recognized that their fear motivated attendance while others were afraid of their cancer and therefore chose to stop attending. Interventions such as social skills training, adjustment counseling, and cognitive-behavioral interventions can be used to mitigate psychological barriers.²⁸ Survivors' level of anxiety may be an area for targeted intervention.

A strength of our study is that we examined a diverse sample of the real life experiences of survivors of childhood cancer. However, interviewing only participants who received care in one of two models of care delivery within two pediatric centers is a limitation. Other models of care for adult survivors of childhood cancer may reduce some of the barriers to care noted in the hospital-based clinics in our study. For example, a shared-care model in which pediatric oncologists and family physicians provided joint care for survivors was found to be feasible and satisfactory to both survivors and their caregivers in the Netherlands.²⁹ Another potential limitation of our study is selection bias, as only interested survivors participated. It is possible that survivors lost to LTFU who were not willing to participate might have had additional barriers that prevented them from attending. Finally, interviews were only conducted with survivors. Research that also includes parents and healthcare providers could increase our understanding of facilitators and barriers to transition.

Conclusions

Our study has identified a number of knowledge gaps. First, more research is needed on methods of fostering independence and promoting self-management skills in adolescents, which became evident through our analysis of the relationship between patient factors (due diligence and personal responsibility for health), support factors (motivating attendance), and system factors (communication and education). Second, a greater understanding is needed about the impact of patients' knowledge deficits on the transition process. Finally, during the interview process, at least five individuals sought out information from the interviewer about how to return to LTFU care. Research on programs that target young adults who have failed to transition to adult LTFU or who have dropped out of LTFU after transitioning may help identify methods to reengage those lost to transition.

Our study makes a number of recommendations to address challenges within the macro-level system factors and illustrates ways in which different factors interact to facilitate and/or prevent transition. Ultimately, understanding the relationship between the system and social support vis-à-vis the patient is critical for designing effective transition programs. The recommendations from our study will help to improve LTFU care for childhood cancer survivors transitioning from pediatric to adult LTFU care.

Footnotes

Acknowledgments

The authors wish to thank the participants who gave their time to be interviewed for this project. This study received grants from the Canadian Institutes of Health Research's Institute of Cancer Research and from the Innovation Fund of the Hamilton Academic Health Sciences Organization Alternate Funding Plan, under the auspices of the Ontario Ministry of Health and Long-Term Care and the Ontario Medical Association. Anne Klassen is funded by a Canadian Institutes of Health Research Mid-Career Award.

Author Disclosure Statement

No competing financial interests exist.

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