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Critical Issues in Transition and Survivorship …

Critical Issues in Transition and Survivorship
for Adolescents and Young Adults
With Cancers* Original Article

Published in Health & Medicine
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  • 1. Original ArticleCritical Issues in Transition and Survivorshipfor Adolescents and Young AdultsWith Cancers*Paul C. Nathan, MD, MSc1; Brandon Hayes-Lattin, MD2; Jeffrey J. Sisler, MD, MCISc3,4; and Melissa M. Hudson, MD5 The majority of children, adolescents, and young adults diagnosed with cancer will become long-term survivors with many potential years of life ahead of them. Their journey from health through diagnosis and treatment to survivorship involves multiple transitions. Transitional services that should be available throughout this journey include health- related education, health surveillance and screening, management of cancer-related complications, and psychosocial support relevant to their developmental needs. Survivors require lifelong care that focuses not only on the medical risks arising from their cancer therapy, but also the psychosocial, educational, and vocational implications of surviving cancer. Because many community health care providers lack familiarity with the health risks associated with childhood or adolescent/young adult cancer, survivors must have sufficient health knowledge to advocate for risk-based cancer- related follow-up; the provision of a treatment summary and care plan at the conclusion of their cancer therapy is an important tool for facilitating this process. The availability of resources for survivors varies by geography, health care system, and survivor characteristics. Adolescents and young adults who receive their care outside of a pediatric cancer center have particularly limited access. The limitations in cancer center resources (along with survivor preference) strongly suggest that the long-term care of survivors will need to be shared between the cancer centers and primary care providers in survivors’ communities. Cancer 2011;117(10 suppl):2335–41. V 2011 American Cancer Society. C KEYWORDS: survivorship, transition, cancer, pediatric, adolescent, young adult.The impact of the diagnosis and treatment of cancer on long-term health outcomes in children has received much attentionover the past decade.1 Until recently, less attention was focused on the burden of cancer on adolescents and young adults, whoface unique challenges from diagnosis through survivorship. In 2006, the US National Cancer Institute (NCI) published a reportfrom the Adolescent and Young Adult Oncology Progress Review Group, which highlighted the finding that unlike younger orolder cohorts, those diagnosed with cancer between ages 15 and 39 years have seen little to no improvement in cancer survivalrates for decades.2 This new focus on the adolescent/young adult population was reflected in the Canadian Cancer Society’s pub-lication, Canadian Cancer Statistics 2009, which featured ‘‘Cancer in Adolescents and Young Adults (15-29 Years)’’ as a SpecialTopic.3 The vast majority of patients diagnosed with cancer as an adolescent/young adult will become long-term survivors. From1997 to 2004, the 5-year overall survival for those diagnosed with cancer between ages 15 and 29 years in Canada was 83%.3 It is important to consider the definition of the adolescent/young adult group, as the incidence of cancer increaseswith age. In Canada, there is an average of 2075 new cancer cases per year diagnosed between ages 15 and 29 years, com-pared with only 836 cases between ages 0 and 14 years. An expansion of the definition of adolescent/young adult to thosediagnosed between ages 15 and 39 years, which matches the definition of the NCI’s Progress Review Group, wouldCorresponding author: Dr. Paul C. Nathan, The Hospital for Sick Children, Division of Hematology/Oncology, 555 University Avenue, Toronto ON M5G 1X8,Canada; Fax: (416) 813-5327; paul.nathan@sickkids.ca1 The Hospital for Sick Children, Toronto, Ontario, Canada; 2Knight Cancer Institute at Oregon Health and Science University, Portland, Oregon; 3Department ofFamily Medicine, University of Manitoba, Winnipeg, Manitoba, Canada; 4CancerCare Manitoba, Winnipeg, Manitoba, Canada; 5St. Jude Children’s ResearchHospital, Memphis, TennesseeThe articles in this supplement represent presentations and discussions at the ‘‘International Workshop on Adolescents and Young Adults with Cancer: TowardsBetter Outcomes in Canada’’ that was held in Toronto, Ontario, March 11-13, 2010.*Workshop on Adolescents and Young Adults with Cancer: Towards Better Outcomes in Canada, Supplement to Cancer.DOI: 10.1002/cncr.26042, Received: September 21, 2010; Revised: November 18, 2010; Accepted: November 19, 2010, Published online April 27, 2011 in WileyOnline Library (wileyonlinelibrary.com)Cancer May 15, 2011 2335
  • 2. Original Articledramatically increase the number of adolescent/young adult Table 1. Transition Issues That Should Be Addressed With Adolescent/Young Adult Cancer Survivorssurvivors being considered, and therefore increase therequired capacity of programs and services to attend to ado- Physical health and functionlescent/young adult patients. Unique factors are associated Growth and developmentwith a cancer diagnosis in the adolescent/young adult age Promotion of healthy lifestyle Symptom managementrange. Whereas leukemia, lymphoma, and brain tumors are Cancer-related chronic health problemsthe most common pediatric cancer diagnoses, and malignan- Sexual/reproductive healthcies of the prostate, breast, lung, and colorectum predominate Fertility preservationamong older adults, lymphomas are the most common diag- Sexualitynoses among patients aged 15 to 29 years, with thyroid cancer Contraception Sexually transmitted infections/diseasesin females and testicular cancer in males occurring with simi- Impact of cancer on fertility/reproductive outcomeslar frequency in each sex.4 Furthermore, increasing data show Sexual dysfunctionthat diseases such as acute lymphoblastic leukemia, breast Mental healthcancer, and colorectal cancer, when diagnosed among the ad- Psychological adjustment to cancer survivorshipolescent/young adult population, are biologically distinct Cognitive functioning Psychopathologyfrom those diseases in older or younger cohorts.5 In addition Emotional well-beingto biological differences, adolescents/young adults face a Goal attainmentunique range of psychosocial issues that may affect their care Health-related hindranceand transition into survivorship. These include geographic Social competencemobility, concerns about fertility preservation, and isolation Partnerships/marriage Interpersonal relationsfrom their peers. A cancer diagnosis during the adolescent/ Reintegration into normative social systemsyoung adult period often derails academic or vocational goals, Educational progress/need for resourcesand can impede the transition to independence that usually Vocational planningoccurs during the young adult years. Because the vast major- Employmentity of patients diagnosed with cancer as an adolescent/young Health behaviors Alcohol consumptionadult will go on to be long-term survivors,3 it is important for Tobacco useadolescent/young adult cancer patients to have access to pro- Illicit drug Usegrams that address their unique health and psychosocial issues Physical activity(Table 1) to optimize the quality of their survival. Dietary habits Sun protection Both children and adolescents/young adults with Risky sexual behaviorcancer face multiple transitions during their cancer jour- Adherence to treatmentney, from health to a diagnosis of a potentially life-threat- Adherence to health screening/surveillanceening illness, from diagnosis to treatment, then from Health educationtreatment to survivorship or palliation (Fig. 1). In children Diagnostic and treatment history Cancer-related health risksand adolescents treated in pediatric cancer centers, there is a Self-management of medical issuesfurther transition from pediatric to adult care, whereas Impact of health behaviors on cancer-related risksthose adolescents and young adults treated in an adult can- Health screening/surveillance recommendations Navigation of the adult health care environmentcer center often transition from cancer center-based care to Health care accesscare coordinated by a primary care physician. This paper Insurance accessexplores these transitions in children and adolescents/young adults with cancer, with a particular focus on thetransition to survivorship care. For those fortunate patients (eg, cystic fibrosis, diabetes, congenital heart disease).6-10who survive their cancer, the period of survivorship will However, adolescents/young adults with these chroniccomprise the longest portion of their cancer journey. diseases usually require some form of therapy or have symptoms of their disease at the time of transition. In con-Phases in the Transition of Adolescents/ trast, survivors of adolescent/young adult or childhoodYoung Adults With Cancer cancer are frequently asymptomatic and in good healthMuch may be learned by examining the models used in but often have limited knowledge of their prior disease orthe care and transition of other chronic childhood diseases their long-term risks resulting from their disease and2336 Cancer May 15, 2011
  • 3. Transition and Survivorship/Nathan et al Figure 1. Key steps in the multiple transitions from cancer diagnosis to long-term follow-up in an adult care setting are shown.treatment thereof.11,12 Because many cancer treatment- survivor care to a primary care practitioner, or from a pedi-related sequelae may not become clinically apparent until atric to an adult cancer center) as inconsistent. Frequently,the survivor attains maturity or with the aging process, discussions around transition do not occur until the last visiteducation of survivors and the health care providers super- to a specific clinic, allowing the survivor little time to pre-vising their care represents an important component of pare for the transition or to ensure that they have sufficientthe transition process. Educational efforts should begin knowledge about their cancer history and long-term risks toearly in the continuum of cancer care and respond to the assume responsibility for their own long-term care.information needs of children and adolescents/young At cancer diagnosis, orientation to the medical sys-adults across the cancer survivorship spectrum from diag- tem, the planned therapy, and its potential side effects arenosis to long-term follow-up.13 A systematic transition typically prioritized to enhance self-care measures and tol-plan14 should consider key milestones experienced at cancer erance to treatment. Assessment of the impact of cancerdiagnosis, initiation of therapy, completion of therapy, on academic or occupational activities and the ability ofentry into long-term follow-up care, transfer from pediatric the adolescent/young adult to live independently is im-to adult medical providers, and exit from oncology care pro- portant to facilitate adjustment during the acute phase ofviders to primary health care providers. Transitional services therapy and access to supportive psychosocial services.that should be available to children and adolescents/young Before initiation of therapy, the informed consent processadults throughout the survivorship spectrum ideally include must address potential late treatment-related toxicity,health-related education, health surveillance and screening, measures that will be undertaken to prevent or remediatemanagement of cancer-related complications, and psycho- adverse effects, as well as pertinent health surveillance andsocial support relevant to their developmental needs.14,15 health-promoting behaviors that can optimize outcomes.Survivors of childhood and adolescent/young adult cancer In particular, the consequences of cancer treatment onwho attended the Workshop on AYA With Cancer: future reproductive health should be considered in allTowards Better Outcomes in Canada identified the process newly diagnosed adolescent/young adult cancer patientsof transition (from acute care to survivor clinics, from acute/ and followed by appropriate referrals for interventions toCancer May 15, 2011 2337
  • 4. Original Articlepreserve fertility when possible.16 This topic is addressed limitations in health insurance access and employmentin another article of this Supplement. opportunities are commonly experienced by young adults, Completion of therapy represents another major which may further complicate adolescent/young adultmilestone for child and adolescent/young adult cancer survivors’ ability to obtain optimal follow-up care.24patients.17,18 This is a critical time in the cancer survivor- Therefore, in addition to health education and psychoso-ship continuum, characterized by a transition from a focus cial support, providing assistance in identifying and meet-on cancer treatment and disease surveillance to a focus on ing financial challenges is an important component ofwellness and health maintenance.13 Patients and families transition services for adolescent/young adult survivors inreport considerable anxiety, fears, and vulnerability when this phase of the cancer survivorship spectrum.14 Onetreatment ends and they are no longer actively fighting example of such a program is Ontario’s Successful Aca-cancer; frequently, parents request advice on how to con- demic and Vocational Transition Initiative (www.pogo.tinue to safeguard their child’s health. This milestone rep- ca/care/savti/). This resource, created in 2002 by the Pedi-resents an opportune time to review health risks associated atric Oncology Group of Ontario, provides educationalwith cancer treatment, lifestyle factors that influence these and vocational counseling to teenage survivors, particularlyrisks, and health surveillance pertinent to specific cancer those who may have developed learning difficulties as atreatment modalities that can facilitate timely diagnosis result of their prior cancer or its therapy (eg, survivors ofand remediation of complications. Assessment and sup- brain tumors or acute lymphoblastic leukemia treated withport of psychosocial functioning should also continue to cranial radiation therapy). Although other resources are pro-ensure access to mental health resources to promote resil- vided by cancer centers, regional cancer agencies, or peer orience after the cancer experience and the achievement of professional support groups, survivors are frequentlysocial competence expected during young adulthood.19 unaware of these programs, limiting universal access. These same interventions continue at transition intolong-term follow-up (typically somewhere from 2 to 5 Models of Adolescent/Young Adultyears after completion of therapy), at which time sus- Survivor Caretained cancer remission will eventually mandate the tran- The model chosen for delivering risk-based adolescent/sition from oncology back to primary care. In addition, young adult survivor care in any particular jurisdictionsurvivors of child or adolescent cancer must ultimately needs to be flexible; be able to respond to patient preferen-negotiate the transfer of care from a child-centered to an ces, the risk of recurrence, and late effects; and take intoadult-focused health care provider and environment, account local health system resources. Proposed modelswhere they are required to assume primary responsibility include cancer center follow-up (by the primary treatmentfor their own health and follow-up care. Transition to sur- team or in specialized long-term follow-up [LTFU] clin-vivor care or from a pediatric to an adult center often takes ics), primary care follow-up by the patient’s family physi-place at a critical time during survivors’ development into cian, or most commonly, a combination of both.15,25,26independent young adults. Many survivors view them- Risk stratification of patients based on existing and poten-selves as completely healthy or invincible and do not want tial late effects may help determine how follow-up care isto remain in a system that brings back memories of their best organized.15,25,27 In all models, however, ongoing pri-prior cancer, creates fear about future risks, or treats them mary health care, health maintenance, and treatment ofas chronically ill.20,21 Thus, programs for this population intercurrent illness are the responsibility of primary caremust ensure that these perceptions do not obstruct survi- providers. This may post a particular challenge for patientsvors’ willingness to attain regular care. diagnosed with cancer in young adulthood, whose mobility Because many community providers lack familiarity and previous good health often mean they are less likely towith the health risks associated with childhood cancer, ad- have a connection with a regular primary care provider.olescent/young adult survivors must have sufficient health Survivors at the highest risk for adverse long-termknowledge to advocate for risk-based cancer-related fol- outcomes, such as those treated for central nervous systemlow-up.22 Educating and engaging survivors in self-man- tumors or with hematopoietic cell transplantation, mayagement is difficult, as evidenced by research indicating benefit from indefinite regular follow-up at a cancerthat many survivors do not recognize their risk of serious center. Specialized and separate LTFU clinics are seen ascancer-related health problems and do not adhere to rec- having advantages over the integration of survivorshipommended cancer-related follow-up care.23 Moreover, care into on-therapy clinics, where the preventative,2338 Cancer May 15, 2011
  • 5. Transition and Survivorship/Nathan et alrehabilitative, and health-oriented nature of well follow- monitor adherence to recommended testing, collect infor-up visits may not receive sufficient attention because of mation for outcomes research, and provide support andthe urgency of caring for patients on active treatment.15,26 updated information about survivorship care.15 These dif-These LTFU clinics feature a multidisciplinary core team ferent follow-up care models have not as yet been com-of a physician, nurse or nurse practitioner, and social pared in rigorously designed studies.worker, with consultative services available as needed The close collaboration between cancer specialistsfrom other medical, rehabilitative, and behavioral consul- and primary care that is necessary for effective cancer sur-tants.15 It is important to ensure that a referral pathway is vivorship care will require new links between these distinctestablished to LTFU clinics for patients in late adoles- care systems. The UPCON (Uniting Primary Care andcence diagnosed and treated in the adult oncology system. Oncology) Network links the Manitoba provincial cancerHowever, the establishment of specialized LTFU clinics agency with 34 primary care clinics. Each partner clinicwill not be feasible in all Canadian jurisdictions because of has a lead family physician or nurse practitioner who havelack of institutional capacity, insufficient numbers of eli- been willing to assume the follow-up care of cancergible survivors, or inadequate funding. patients with no regular provider, including young Patients at the lowest risk for late effects, such as adults.32 Because many survivors do not have a primarythose treated with surgery and chemotherapy alone, as for care provider, it is important for cancer centers to find aa Wilms tumor, may be transferred to a primary care phy- family physician or nurse practitioner willing to take onsician for follow-up care after a short period of cancer cen- such patients, rather than having them rely on the use ofter follow-up. Family physicians are willing to assume the walk-in clinics or emergency departments. UPCON Net-follow-up care of their patients who are survivors of adult work clinics also have Internet-based secure access to theand pediatric cancers, but require follow-up care guide- cancer system electronic medical record and to a programlines, a cancer treatment summary, and a clear contact of ongoing continuing education about cancer care, thusperson at the cancer center to answer questions and to building confidence in the quality of care provided. Can-expedite re-referral if there are concerns.28,29 Survivorship cer agencies need to identify primary care outreach leaderscare plans are an important method for addressing the to work with local universities and medical associations tochallenge of the safe and effective transfer of care from create educational sessions that equip primary care pro-cancer center to primary care.30 These documents should viders with the knowledge needed to provide cancer survi-be created by the cancer team and shared with patients, vorship care, including the unique challenges faced byfamilies, and primary care providers at the end of treat- young adults as they cope with new challenges after can-ment. They provide a summary of cancer treatment, risk- cer. Innovative Internet portals with information forbased follow-up recommendations, and health promotion health care professionals about survivorship issues (includ-and screening advice. Examples of these comprehensive ing follow-up guidelines, such as those published by thesummaries and recommendations are presently being Children’s Oncology Group33) and a centralized phonetested in Canada in a randomized trial in adult breast can- number to the treating cancer center, such as exists incer survivors discharged to primary care. Alberta and Manitoba, should also be considered. For the majority of adolescent/young adult cancersurvivors at intermediate risk for late effects, such as those Current Canadian System for Survivors ofwho have received anthracycline-based therapy or radia- Childhood or Adolescent/Young Adult Cancertion therapy, a model that features risk-based follow-up The majority of Canadian children who develop cancercare both in the cancer center and in a primary care setting before age 15 years are treated in a pediatric cancer center,can be considered. A Dutch pilot study has demonstrated whereas about half of those aged 15 to 17 years at diagno-the feasibility and acceptability to patients and family sis are treated in such a facility.34 Twelve (71%) of Cana-practitioners of alternating cancer center and primary care da’s 17 pediatric cancer centers have a formal survivorvisits in a cohort of 121 adult survivors of childhood can- program or clinic dedicated to the care of survivors duringcers. They are following risk-based care guidelines devel- their pediatric and adolescent years. The remaining 5 cen-oped by a cancer center-based general practitioner in ters continue to provide follow-up to survivors in theironcology.31 A case management model has also been pro- acute care oncology clinics, but do not have a specializedposed that would feature periodic contact by an LTFU LTFU program or clinic.35 Once survivors reach adult-clinic nurse with the patient and primary care provider to hood, only 6 of 17 centers have access to a formal programCancer May 15, 2011 2339
  • 6. Original Articlefor adult survivors of childhood cancer, whereas the Thus, there is a need for the implementation and assess-remaining centers discharge survivors to their primary ment of adolescent/young adult survivor care strategies.care physician at some point after the completion of ther- The limitations in cancer center resources (along with sur-apy. In contrast, there are no formal survivor programs for vivor preference) strongly suggest that the long-term care ofadolescents/young adults who receive their acute cancer survivors will need to be shared between the cancer centerscare in an adult hospital. Thus, there are obvious deficien- and primary care providers in survivors’ communities.cies in the medical services currently available to survivorsof childhood, adolescent, and young adult cancer that FUNDING SOURCESvary by region. This deficiency is most apparent among Funding for the national task force on adolescents and youngadolescents/young adults treated in adult cancer centers. adults with cancer has been made possible by a financial contri- bution from Health Canada through the Canadian Partnership Against Cancer. Funding for the workshop was provided byOpportunities for Research C17; the Advisory Board of the Institute for Cancer Research at theIn parallel to the development of programs for adolescent/ Canadian Institutes for Health Research (CIHR); the Public Healthyoung adult survivor care, there is an opportunity for Agency of Canada; the Ontario Institute for Cancer Research; the Meetings, Planning and Dissemination Grants program of theresearch into barriers and facilitators of successful transi- CIHR; the Terry Fox Research Institute; LIVESTRONG, for-tion, models of transition and survivor care, and appraisal merly the Lance Armstrong Foundation; the Canadian Cancerof the health services accessed by survivors. Investigators Society Research Institute; Young Adult Cancer Canada; Hope and Cope; and the Comprehensive Cancer Centre at the Hospi-should create and evaluate methods to empower survivors tal for Sick Children, Toronto, in addition to the support pro-to seek lifelong care (eg, assessment of the impact of survivor vided by the Canadian Partnership Against Cancer to the Taskcare plans or Web-based resources for survivors), and evalua- Force on adolescents and young adults with cancer.tion should include both the content and mode of deliveryof these resources. More knowledge is needed about the cost- CONFLICT OF INTEREST DISCLOSURESeffectiveness of regular surveillance for late effects according The authors made no disclosures.to published guidelines, and the relative costs of providingsuch care in a cancer center or primary care setting. Researchthat takes advantage of the databases linked to Canada’s pub- REFERENCESlic health care system is ongoing in British Columbia,36,37 1. 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