ORIGINAL ARTICLE

Supporting Adolescents and Young Adults With Cancer Through Transitions: Position Statement From the Canadian Task Force on Adolescents and Young Adults With Cancer Krista L. Wilkins, PhD,* Norma D’Agostino, PhD, C Psych,w Annette M. Penney, RN, MN,z Ronald D. Barr, MB ChB, MD,y and Paul C. Nathan, MD, MSc8

Objective: This position statement from the Canadian Task Force on Adolescents and Young Adults with cancer aims to (1) conceptualize the numerous transition experiences encountered by adolescents and young adults (AYA) with cancer; and (2) provide recommendations on how to help the AYA regain a sense of control over their lives as they adjust to these transition experiences. Methods: We reviewed and synthesized a heterogeneous sample of studies and recommendations, ranging from well-designed casecontrolled investigations to opinions of respected authorities based on clinical experience, and reports of expert committees. Results: We describe the key factors that have an impact on different transitions during the cancer journey, and the need for developmentally appropriate services for AYA with cancer that consider both the system issues and individual transition issues. Our recommendations are not intended to be prescriptive, but they are broad enough to be applicable in different types of settings (eg, family doctor, cancer center, specialty service) and systems beyond health care (eg, school system, social system). Conclusions: The Task Force urges health care providers, parents, and AYA with cancer to work together in planning and implementing strategies that will enable individuals to navigate the transitions they encounter along the cancer journey successfully, and strive for meaningful participation in life situations, achieving their potential as fully functional members of society. Key Words: adolescent, young adult, transition, cancer, oncology

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n Canada, there is an average of 2252 new cases of cancer diagnosed every year among adolescents and young adults (AYA).1 A diagnosis of cancer in AYA is 2.7 times more common than such a diagnosis during the first 15 years of life, but rare relative to older ages, accounting for just 2% of invasive cancers in adults.2 Despite the small number of cancers in this age group, there are about 49,400

Received for publication October 1, 2013; accepted December 2, 2013. From the *Faculty of Nursing, University of New Brunswick, Fredericton, NB; wDepartments of Psychosocial Oncology and Palliative Care, Princess Margaret Cancer Centre; 8Department of Pediatrics, The Hospital for Sick Children and University of Toronto, Toronto; yDepartments of Pediatrics, Pathology and Medicine, McMaster University, Hamilton, ON; and zDepartment of Hematology/Oncology, IWK Health Centre, Halifax, NS, Canada. The authors declare no conflict of interest. Reprints: Krista L. Wilkins, PhD, Faculty of Nursing, University of New Brunswick, 33 Dineen Drive, Fredericton, NB, Canada E3B 5A3 (e-mail: [email protected]). Copyright r 2013 by Lippincott Williams & Wilkins

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potential years of life lost due to cancer each year, representing significant personal and societal costs.2 AYA encounter multiple transitions during their cancer journey. Transitions are described as complex processes indicative of a passage or movement from one space (eg, state, condition, circumstance, place, act) or time (eg, life phase) to another that involves some degree of self-redefinition.3–5 Every transition begins with an ending, meaning that people have to let go of familiar ways of being in the world that define who they are to reach a “new beginning.” As individuals navigate through this transitioning process they may experience disequilibrium, or sense of imbalance, that is characterized by feelings of uncertainty, confusion, or anxiety. Actively responding, adapting, and self-managing change is needed to restore a sense of balance and achieve a state of health.6 Individuals perceive a transition in their own way, assigning meaning to that transition and recognizing that some type of change is occurring (eg, in health status, role relations, expectations, or abilities). For AYA with cancer, critical transition periods include: (1) the multiple transitions that occur during cancer care (referral, diagnosis, treatment, palliative care, and long-term follow-up), (2) the transition from the pediatric to the adult health care setting, and (3) the transition to adulthood (Fig. 1). These transition periods are “both a result of and result in [emphasis added] change in lives, health, relationships, and environments.”4 The developmental trajectories of AYA with cancer can go in many directions, depending on the interaction of personal risk and protective factors with environmental barriers and supports.7 Young adulthood, in particular, is a stage of development that involves many significant, personal, and environmental changes that can be impacted severely by a cancer diagnosis.8

A CALL TO ACTION: RECOMMENDATIONS FOR IMPROVEMENT TO NAVIGATING THE TRANSITION PERIODS OF THE AYA WITH CANCER The Canadian Task Force on Adolescents and Young Adults with cancer (herein, the Task Force) was established in 2008 to redress inequities in the care provided to the AYA with cancer.8 It is the position of the Task Force that a comprehensive approach to guide and lead efforts to meet the needs of the AYA with cancer in a measurable way at all critical transition periods along the cancer journey is needed. The multiple transitions associated with active therapy, psychosocial support care, palliation and symptom management, and survivorship, along with recommendations for successful navigation of these transitions

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FIGURE 1. The cancer journey and transition points for the adolescents and young adults with cancer.

are described in Table 1. For this position statement, the term AYA with cancer represents individuals who have experienced cancer as an adolescent or young adult and those in this age group who are survivors of cancer in childhood. The age interval of 15 to 39 years is used to capture the full developmental continuum.9

Active Therapy In the context of active therapy, the transition from being a well AYA to an AYA with cancer is characterized by fragmented, poorly coordinated care and disproportionately long delays in referral, diagnosis, and treatment.1 Many of the care priorities and needs of AYA with cancer are unique, and these are not met adequately in either the pediatric, family centered model or the diseasefocused and person-centered model of adult care. There is poor accrual to appropriate clinical trials, and insufficient access to age-appropriate supportive care and psychosocial resources.8 The prediagnosis referral (from primary care physician to oncologist) may be the first target for improving the management of AYA cancer care. For AYA, the recognition of being unwell and requiring medical intervention is often their first transition to an illness experience, resulting in a heightened need for support and understanding of their health care needs. Medical intervention at this critical transition point needs to be addressed to clarify the process of referral and prevent delays in the cancer diagnosis.10 Establishing guidelines for referral that recognize and address the developmental needs of AYA in conjunction with awareness of other transition points in their life

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trajectory is necessary.10,11 Also critical to navigating the transition to active therapy is an orientation to the medical system, the planned therapy, and its potential side effects.12

Psychosocial Supportive Care Although a cancer diagnosis has a potentially devastating impact at any age, there are distinct and long-term effects in AYA with cancer resulting from a disrupted life trajectory.13 AYA are in a critical transitional period when far-reaching, life-changing decisions are made that shape their future in many ways. AYA are at risk for psychological and emotional suffering that may constitute a unique burden of grief related to the life disruptions and losses.14,15 AYA with cancer are grieving not only the effects of their cancer, its treatment and aftermath, but also the interruption of the life stages and transitions that they would be normally experiencing at this age.5 Often, they are forced to take a developmental path that deviates from the path typical of others their age.7 For AYA, identity formation can be difficult because they identify with both their social group who have not been diagnosed with cancer and their active treatment or survivor social group.14,16 This identity paradox may contribute to a sense of isolation and uncertainty that can amplify risks to physical and emotional well-being, such as smoking, alcohol and drug use/abuse, body image problems, and poor eating habits.16,17 Isolation and identity challenges can be decreased by supporting AYA to live dayto-day, impose personal limits, trust the health care team, get information, pace oneself, connect with people (with and without cancer), and live a “normal life.”16,17 r

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TABLE 1. AYA Transitions Associated With Cancer Care and Recommendations

Cancer Care and Associated Transitions Active therapy: Wellness to illness requiring treatment and hospitalization

Psychosocial supportive care: Disruptions in life trajectory and developmental milestones

Palliation and symptom management: Curative treatment to symptom management and end of life care

Survivorship: Active cancer treatment to successful completion of cancer treatment; health-oriented transition; crisis-oriented transition

Awareness and advocacy: Uninvolved, uninformed to informed health care consumer in partnership with parents and health care providers

Research and metrics: Any transition experience

Recommendations Prevent delays in the cancer diagnosis Establish guidelines for referral that recognize and address the developmental needs of AYA Orient AYA to medical system, planned therapy and its potential side effects Recognize the distinct and long-term effects in AYA with cancer resulting from a disrupted life trajectory Encourage AYA to return to school as soon as possible following diagnosis Assist the AYA to make decisions about reproductive choices (with or without medical intervention) and parenthood Introduce palliative care in the AYA’s cancer trajectory even when the focus of care is on cure Involve AYA and their parents in decisions about continuation of cancer therapy Implement multidisciplinary palliative care teams that can work in both pediatric and adult facilities Offer respite care for families caring for the AYA Prepare AYA well in advance for transfer from pediatric to adult care services Involve health care providers familiar with the transitioning process Offer transition programs Develop policies on timing of the transfer from pediatric to adult care services and support for primary care providers Establish immediate collaborative efforts between pediatric and adult oncology teams to deal with crises such as relapsed or new primary cancer Provide AYA with a treatment summary and survivor care plan before transition out of their pediatric cancer center Allow new care provider to access the treating team and their records Support parents to help AYA to take increasing responsibility for their care/knowledge of their cancer history Conduct ongoing assessments of processes and outcomes of transitioning Examine models of transition Develop and tests interventions to empower AYA with cancer Developing meaningful ways to assess and measure transition readiness, and robust indicators of the processes and outcomes of transitioning

AYA indicates adolescents and young adults.

For some, the transition to regain control and a sense of independence may never be made—into the labor market, university, romantic relationships, financial and personal independence, or parenthood.11,13–15,17 These disruptions and losses may have an impact even more far reaching than at any other age because AYA experience them in a way that older people with cancer do not. They have not yet developed skills to help them face significant uncertainty and usually have had no previous situations to which they can compare.18 Involving the AYA with cancer in the planning of transition will often enhance their sense of control and independence in their health care and foster lifelong functioning and self-determination. Friends and school are important for AYA with cancer.19,20 School is often a place of refuge where AYA can be just themselves for a while in an environment free from the issues and demands of illness. It is recommended that AYA return to school as soon as possible after diagnosis because it provides a sense of normalcy and an opportunity to engage in age-appropriate activities (eg, completing r

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academic work, engaging in social interaction). Returning to school can be difficult. AYA need to readjust to school demands and routines, and peer reactions and questions. Repressed feelings may reveal themselves as acting-out behaviors. Some AYA will withdraw or become disruptive in the classroom, fall behind in schoolwork, bring home failing grades, or get into fights with classmates. The impact of active cancer therapy on sexuality, sexual functioning, and relationships in AYA has been well documented.11,14,21,22 Changes in appearance brought about by cancer treatments may provoke insecurities about body image and attractiveness, impacting one’s identity as a sexual being.17 When morale and self-confidence are undermined, many AYA with cancer express concern about being sexually attractive, dating, and forming new relationships. Indeed, a significant aspect of the transition to adulthood or survivorship for the AYA with cancer is the experience of uncertain fertility, reproductive potential, and parenthood. For many, the uncertainties related to reproductive challenges include effects of treatment on future www.jpho-online.com |

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fertility, suitability, and effectiveness of fertility preservation techniques; effects of pregnancy on the woman and child; success rates of assisted reproductive technology; and long-term health of offspring.11,14,21 The significance of concerns about fertility often shifts between contexts and over time.21 Proactive attention of health care professionals to fertility is needed to meet AYA present and future needs, and process their feelings. Offering opportunities to be able to exercise reproductive choice (with or without medical intervention) or alternative routes to parenthood may be particularly important to AYA well-being.21

without the treatment to keep the cancer in remission.24 Research has shown that AYA have unique challenges associated with completing treatment, such as redefining what “being normal” means and regaining that sense of normalcy, reestablishing family and peer relationships, and coping with fears associated with follow-up procedures and relapse.12,14,28 The completion of treatment has been characterized by enduring feelings of uncertainty that remain unchanged across the survivorship continuum.29 One transition that is particularly salient for AYA with cancer is the transfer from pediatric to adult care services—a health care system transition.12,30 This transition usually involves the relatively healthy survivor who will require life-long systematic monitoring and potential management of chronic late effects by an adult-oriented provider.31 The unmet needs of this unique group have become increasingly evident, and include gaps in medical supervision, transfer to a new health care environment without adequate supports (eg, pediatric health care providers and parents), and lack of trust on the part of the AYA.32 Successful transitioning requires planning, resources, health care providers familiar with the transitioning process, and collaborative interactions between adult and pediatric subspecialists.32 This transition should be anticipated well in advance, with flexibility in timing. Moving from a pediatric system that is nurturing and directed to one that requires independence and self-advocacy, AYA may experience feelings of abandonment, reinforcing the need for careful planning of the transition process.32,33 Ideally, the moment of transition from the pediatric to the adult health care system should be as “normal” as possible, individualized, and a responsibility of everyone involved, including AYA with cancer, their parents, and the health care team. Not all AYA will be well prepared for this transition for various reasons. AYA with cancer are often asymptomatic at the time of transition and hence may not perceive a need for continuing formal interaction with the health care system. Indeed, many do not recognize their risk for serious cancer-related health problems and do not adhere to recommended cancer-related follow-up care.34 Some may be more dependent on their parents and the health care system in terms of knowledge and management skills. Preparation for the transitioning process should be flexible enough to ensure that each AYA with cancer is sufficiently knowledgeable of their individual treatment history and late effects risks, has the basic skills required to manage their individual health care, and is aware of the importance of life-long risk-based monitoring for survivors of cancer in childhood and adolescence. Transitioning programs in pediatric/adolescent cancer centers are now recommended.12 These programs should include clear policies on transition such as timing of the transfer, preparation and education, receptive and capable adult services, administrative support, and integration of primary care providers.23,31,32 According to Freyer and Brugieres,31 the 2 basic models for delivering long-term follow-up transitional care are institution-based (follow-up occurs within the cancer center where treatment occurred), or community-based (follow-up occurs in a primary care setting). An alternative form of institutional-based care involves follow-up affiliated with the pediatric center where the primary cancer care occurred. Regardless of the location, education, empowerment, support, and resources for the survivors and parents are fundamental to ensure the appropriate communication of treatment history and late

Palliation and Symptom Management AYA with cancer usually have some difficulty in shifting from potentially curative treatment to treatment that is life-prolonging or primarily for symptom management.23,24 This transition is associated too often with “giving up” or abandoning effective therapy. It may isolate AYA with cancer further from their new peers who are still receiving active treatment. Reluctance to acknowledge that cure is not possible, and death from the disease or its complications is inevitable, indicates that some AYA with cancer are not yet ready for the transition to palliative care. Lack of communication about illness trajectory and potential outcomes often results in a “conspiracy of silence” that precipitates further distress.23 Early introduction of palliative care in the AYA’s cancer trajectory will ensure that appropriate considerations of the life-threatening nature of the illness are discussed.23 In thinking of palliation as mitigation of symptoms and reduction of suffering, palliative care can be introduced at the cancer diagnosis, even when the initial focus is on cure.24,25 The aim is to “normalize” the involvement of the palliative care/symptom management team to help manage symptoms throughout the course of the AYA’s illness.23 If the cancer progresses or recurs, more palliative and less curative therapy can be offered, thus creating a gradual acceptance that cure is not possible. It is recognized that decisions about continuation of cancer therapy need to involve the AYA with cancer and their parents. At the time of transition to palliative care, some AYA with cancer have outgrown chronologically or in emotional maturity the pediatric setting where their curative treatment started. Adult palliative care programs are not an ideal environment for the AYA with cancer because these are usually populated by older adults or seniors.23 There is a need for specialized AYA multidisciplinary palliative care teams that can work in both pediatric and adult facilities, including hospices. “Virtual” AYA palliative care teams linked by webcams and video conferencing could be used to offer support to AYA with cancer being cared for at home.23 Respite care for families caring for the AYA at home should also be offered so families can have a break if they so choose.25

Survivorship An important milestone in the cancer trajectory is the successful completion of cancer treatment.24 Cancer survivorship reflects the transition from active treatment to ongoing surveillance/monitoring,26 although others have defined survivorship as beginning at diagnosis.27 A new “normal” life is established and the principal health care focus is on long-term follow-up with periodic evaluations, leaving AYA with cancer feeling exposed and vulnerable

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effects risks to new care providers so that they can deliver the appropriate long-term follow-up. Another profound transition during survivorship is referred to as a crisis-oriented transition.30 This transition involves AYA who are diagnosed in the pediatric setting with relapsed or a new primary cancer, and are moved quickly into the adult setting to begin or complete treatment. When cancer recurs, treatment can be more complex and intense with more uncertain results. Facing treatment and its side effects again is particularly challenging for AYA with cancer because their hope for a cure may disappear or diminish and distrust in treatment may arise, leading to profound uncertainty.35,36 With minimal time for preparation, this transition requires particular collaborative efforts by the pediatric and adult oncology teams. Collaborative efforts to bridge the gap might include joint team meetings, information exchange, or dual appointments.

Ongoing assessment of AYA’s capacity to engage in the processes of transition (ie, transition readiness) should be the standard of care for all transitioning efforts.14,38 It will also be important to assess whether the AYA with cancer are navigating the transitioning process successfully (process indicators) and have navigated the process successfully (outcome indicators) in terms of knowledge, skills/ self-efficacy, beliefs/expectations, goals, relationships, and psychosocial functioning.5,19,37 Process indicators that may be observed include development and use of coping skills to navigate the transitioning process, relationships with family members and/or friends, and changes in family routines. Consistent with current thinking on positive youth development and outcomes of transition,39 examples of meaningful individual and societal outcome indicators include quality of life, academic functioning, family and peer relationships, and outlook on life. When the transitions are successful, AYA with cancer are able to look at situations differently, know themselves better and acknowledge the importance of support from health care providers and family in this process.17



Awareness and Advocacy Because many community-based providers lack familiarity with the health risks associated with cancer in AYA, these young people and their families must develop self-advocacy skills to manage their own health care needs.12,24,34 Transforming AYA with cancer into informed health care consumers is difficult because many do not recognize their risk of serious cancer-related health problems and do not adhere to recommended cancer-related follow-up care.34 Empowering AYA and their families/ parents/partners with knowledge of their treatment history and its implications, current and potential health issues, and the need for life-long monitoring, even if asymptomatic, will promote self-efficacy.31 Education is particularly important for AYA with cancer who feel lost in transition with few ideas about how to manage follow-up care. The challenge is that the need for information may become manifest only years after completing primary cancer treatment by which time the AYA may have lost contact with their cancer care providers. Provision of a cancer treatment summary and a survivor care plan before transition out of their treating institution is essential. Such tools are intended to improve AYA knowledge of their treatment history and exposures (such as chemotherapy doses and radiation fields), document their long-term risks, and lay out a plan for surveillance for late effects. For those AYA who transition to a primary care provider (rather than remaining in the cancer system), the provision of a care plan to their primary care provider is also essential, as many primary care providers will not be familiar with the specific recommendations for follow-up care.34 It has been suggested that maintaining a relationship with the treating health care team for the first year after treatment may be helpful in facilitating this transition.14 Parents have a pivotal role in the transition process for AYA survivors of pediatric cancer. Their engagement in the transition process from pediatric family focused care to adult-focused health care for the survivor is a determining factor in the success of this transition process.27 Parental support and encouragement of AYA development of independence, self-management, and self-advocacy with respect to health care behaviors enhances transition readiness in this population.32,37 Supporting parents in this transition work and assessing parental readiness for transition are recognized as essential components for successful transition to adult-based care for AYA with cancer.37 r

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Research and Metrics The multiple transitions of the AYA with cancer provide an opportunity for research into their responses to the entire cancer trajectory. Specifically, research is needed into the barriers and facilitators of successful transition, models of transition, administration and organization of care (eg, who is responsible for appointments), and interventions to empower AYA with cancer to manage the diverse and shifting demands that they are likely to encounter with each transition.12 Developing meaningful ways to assess and measure transition readiness, and robust indicators of healthy and unhealthy transitioning processes, will be valuable areas of research. It will be important also to conduct research to examine the role of demographic, cancer-related, and other factors that predict the outcomes of transition.

CONCLUSIONS For the AYA with cancer, multiple transitions may occur simultaneously, adding to the complexity of cancer treatment at this age. Transitions are ongoing and dynamic processes. As such, the transitions that AYA with cancer encounter throughout the cancer trajectory are described as being upsetting, full of uncertainty, distressing, or disrupting. AYA with cancer will often experience disequilibrium requiring support to manage and regain a sense of balance or “new norm.” The process of transition should address not only specific health problems, but also the way these health problems affect the AYA’s wider health, social, psychological, educational, and employment needs and opportunities. A coordinated approach to support AYA with cancer and their families must be multidisciplinary and multisystem, involving the specialized teams at the pediatric hospital, adult providers including general practitioners, and educational and social services.40 It is particularly important that a sound cooperative working relationship is developed between adult and pediatric services irrespective of the setting. Parents/caregivers must also be involved in the transition, acknowledging and facilitating the gradual evolution of the AYA’s autonomy within the health care setting. www.jpho-online.com |

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This position statement is a first step toward enhancing care for AYA with cancer by providing recommendations intended to supplement existing standards for supporting the health care transitions of AYA with all chronic illnesses.41–43 Existing standards of care refer to the transition in health care from the pediatric to the adult health care setting (a system issue). What we add to existing standards is consideration of individual transition issues for the AYA with cancer, their families and health care providers related to both the disease processes and the developmental processes of becoming an adult.

17. Olsen PR, Harder I. Caring for teenagers and young adults with cancer: a grounded theory study of network-focused nursing. Eur J Oncol Nurs. 2009;15:152–159. 18. Corbeil A, Laizner AM, Hunter P, et al. The experience of uncertainty in young adults with cancer. Cancer Nurs. 2009;32:E17–E27. 19. Lopez AD. Transition Experiences of Adolescent Survivors of Childhood Cancer: A Qualitative Investigation (dissertation). Tampa, FL: University of South Florida Graduate School; 2011. Available at: http://scholarcommons.usf.edu/etd/3213. Accessed July 10, 2012. 20. McLoone JK, Wakefield CE, Butow P, et al. Returning to school after adolescent cancer: a qualitative examination of Australian survivors’ and their families’ perspectives. J Adolesc Young Adult Oncol. 2011;1:87–94. 21. Crawshaw MA, Sloper P. ‘Swimming against the tide’—the influence of fertility matters on the transition to adulthood or survivorship following adolescent cancer. Eur J Cancer Care. 2010;19:610–620. 22. Halliday LE, Boughton MA. Exploring the concept of uncertain fertility, reproduction and motherhood after cancer in young adult women. Nurs Inq. 2011;18: 135–142. 23. Pritchard S, Cuvelier G, Harlos M, et al. Palliative care in adolescents and young adults with cancer. Cancer. 2011;117: 2323–2328. 24. Woodgate RL, West C, Wilkins KL. Family-centered psychosocial care. In: Baggott CR, Kelly KP, Fochtman D, Foley GV, eds. Nursing Care of Children and Adolescents With Cancer and Blood Disorders. 4th ed. Glenview, IL: Association of Pediatric Oncology Nurses; 2011:114–164. 25. Steele R, Derman S, Cadell S, et al. Families’ transition to a Canadian paediatric hospice. Part two: results of a pilot study. Int J Palliat Nurs. 2008;14:287–295. 26. Miller K, Merry B, Miller J. Seasons of survivorship revisited. Cancer J. 2008;14:369–374. 27. Institute of Medicine & National Research Council of the National Academies. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: Institute of Medicine & National Research Council of the National Academies; 2006. 28. Duffey-Lind EC, O’Holleran E, Healey M, et al. Transitioning to survivorship: a pilot study. J Pediatr Oncol Nurs. 2006;23:335–343. 29. Decker CL, Haase JE, Bell CJ. Uncertainty in adolescent and young adults with cancer. Oncol Nurs Forum. 2007;4: 681–688. 30. Freyer DR, Kibrick-Lazear R. In sickness and in health: transition of cancer-related care for older adolescents and young adults. Cancer. 2006;107(suppl):1702–1709. 31. Freyer DR, Brugieres L. Adolescent and young adult oncology: transition of care. Pediatr Blood Cancer. 2008; 50(suppl):1116–1119. 32. Henderson TO, Friedman DL, Meadows AT. Childhood cancer survivors: transition to adult-focused risk-based care. Pediatr. 2010;126:129–136. 33. Woodgate RL. The importance of ‘being there’: perspectives of supportive relationships by adolescents. J Pediatr Oncol Nurs. 2006;23:22–134. 34. Nathan PC, Daugherty CK, Wroblewski KE, et al. Family physician preferences and knowledge gaps regarding the care of adolescent and young adult survivors of childhood cancer. J Cancer Surviv. 2013;7:275–282. 35. De Graves S, Aranda S. Living with hope and fear: the uncertainty of childhood cancer after relapse. Cancer Nurs. 2008;31:292–301. 36. Vivar CG, Canga N, Canga AD, et al. The psychosocial impact of recurrence on cancer survivors and family members: a narrative review. J Adv Nurs. 2009;65:724–736. 37. Freyer D. Transition of care for young adult survivors of childhood and adolescent cancer: rationale and approaches. J Clin Oncol. 2010;28:4810–4818.

ACKNOWLEDGMENTS The authors acknowledge the contributions of Jan Willem Gorter, MD, PhD, Department of Pediatrics, McMaster University, and David Freyer, DO, MS, Keck School of Medicine, University of Southern California for their helpful comments on this manuscript. REFERENCES 1. De P, Ellison LF, Barr RD, et al. Canadian adolescents and young adults with cancer: Opportunity to improve coordination and level of care. CMAJ. 2011;183:187–194. 2. Canadian Cancer Society’s Steering Committee. 2009 Canadian Cancer Statistics Special Topic/: Cancer in Adolescents and Young Adults (Ages 15-29 Years). Toronto, ON: Canadian Cancer Society; 2009. Available at: http://www.cancer.ca. Accessed October 1, 2012. 3. Kralik D, Visten K, van Loon A. Transition: a literature review. J Adv Nurs. 2006;55:320–329. 4. Meleis A, Sawyer L, Im E, et al. Experiencing transitions: an emerging middle range theory. Adv Nurs Sci. 2000;23: 12–28. 5. Wilkins KL, Woodgate RL. Transition: a conceptual analysis in the context of siblings of children with cancer. J Ped Nurs. 2006;21:256–265. 6. Huber M, Knottnerus JA, Green L, et al. How should we define health? BMJ. 2011;343:d4163–d4165. 7. Gorter JW, Stewart D, Woodbury-Smith M. Youth in transition: care, health and development. Child Care Health Dev. 2011;37:757–763. 8. Fernandez C, Fraser GA, Freeman C, et al. Principles and recommendations for the provision of healthcare in Canada to adolescent and young adult-aged cancer patients and survivors. J Adolesc Young Adult Oncol. 2011;1:53–59. 9. Barr R, Rogers P, Schacter B. What should the age range be for AYA oncology? J Adolesc Young Adult Oncol. 2011;1:4, (letter). 10. McGoldrick M, Carter B, Carter EA, et al. In the Expanded Family Life Cycle: Individual, Family, and Social Perspectives. 4th ed. Boston, MA: Allyn and Bacon; 2011. 11. Zebrack BJ. Psychological, social, and behavioral issues for young adults with cancer. Cancer. 2011;117:2289–2294. 12. Nathan PC, Hayes-Lattin B, Sisler J, et al. Critical issues in transition and survivorship for adolescents and young adults with cancers. Cancer. 2011;117:2335–2341. 13. Grinyer A. The biographical impact of teenage and adolescent cancer. Chronic Illn. 2007;3:265–277. 14. Thompson K, Palmer S, Dyson G. Adolescents & young adults: Issues in transition from active therapy into followup care. Eur J Oncol Nurs. 2009;13:207–212. 15. Trevino KM, Maciejewski PK, Fasciano K, et al. Grief and life disruption in young adults with advanced cancer. J Adolesc Young Adult Oncol. 2011;1:168–172. 16. Jones BL, Parker-Raley J, Barczyk A. Adolescent cancer survivors: Identify paradox and need to belong. Qual Health Res. 2011;21:1033–1040.

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38. Schwartz LA, Tuchman LK, Hobbie WL, et al. A socialecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions. Child Care Health Dev. 2011;37:883–895. 39. Gorter JW, Stewart D, Woodbury-Smith M, et al. Pathways toward positive psychosocial outcomes and mental health for youth with disabilities: a knowledge synthesis of information on developmental trajectories. Can J Comm Mental Health. In press. 40. Kraus de Camargo O. Systems of care: transition from the biopsycho-social perspective of the International Classification of Functioning, Disability and Health. Child Care Health Dev. 2011;37:792–799.

41. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110:1304–1306. 42. Canadian Paediatric Society. Transition to adult care for youth with special health care needs. Paediatr Child Health. 2007;12:1304–1306. 43. Rosen DS, Blum RW, Britto M, et al. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society of Adolescent Medicine. J Adolesc Health. 2003;33:309–311.

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Supporting adolescents and young adults with cancer through transitions: position statement from the Canadian Task Force on Adolescents and Young Adults with cancer.

This position statement from the Canadian Task Force on Adolescents and Young Adults with cancer aims to (1) conceptualize the numerous transition exp...
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