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

1. Original Article
Critical Issues in Transition and Survivorship
for Adolescents and Young Adults
With 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 attention
over the past decade.1 Until recently, less attention was focused on the burden of cancer on adolescents and young adults, who
face unique challenges from diagnosis through survivorship. In 2006, the US National Cancer Institute (NCI) published a report
from the Adolescent and Young Adult Oncology Progress Review Group, which highlighted the finding that unlike younger or
older cohorts, those diagnosed with cancer between ages 15 and 39 years have seen little to no improvement in cancer survival
rates 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 Special
Topic.3 The vast majority of patients diagnosed with cancer as an adolescent/young adult will become long-term survivors. From
1997 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 increases
with 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 those
diagnosed between ages 15 and 39 years, which matches the definition of the NCI’s Progress Review Group, would
Corresponding 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.ca
1
The Hospital for Sick Children, Toronto, Ontario, Canada; 2Knight Cancer Institute at Oregon Health and Science University, Portland, Oregon; 3Department of
Family Medicine, University of Manitoba, Winnipeg, Manitoba, Canada; 4CancerCare Manitoba, Winnipeg, Manitoba, Canada; 5St. Jude Children’s Research
Hospital, Memphis, Tennessee
The articles in this supplement represent presentations and discussions at the ‘‘International Workshop on Adolescents and Young Adults with Cancer: Towards
Better 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 Wiley
Online Library (wileyonlinelibrary.com)
Cancer May 15, 2011 2335

2. Original Article
dramatically increase the number of adolescent/young adult Table 1. Transition Issues That Should Be Addressed With
Adolescent/Young Adult Cancer Survivors
survivors being considered, and therefore increase the
required capacity of programs and services to attend to ado- Physical health and function
lescent/young adult patients. Unique factors are associated Growth and development
with a cancer diagnosis in the adolescent/young adult age Promotion of healthy lifestyle
Symptom management
range. Whereas leukemia, lymphoma, and brain tumors are Cancer-related chronic health problems
the most common pediatric cancer diagnoses, and malignan-
Sexual/reproductive health
cies of the prostate, breast, lung, and colorectum predominate Fertility preservation
among older adults, lymphomas are the most common diag- Sexuality
noses among patients aged 15 to 29 years, with thyroid cancer Contraception
Sexually transmitted infections/diseases
in females and testicular cancer in males occurring with simi- Impact of cancer on fertility/reproductive outcomes
lar frequency in each sex.4 Furthermore, increasing data show Sexual dysfunction
that diseases such as acute lymphoblastic leukemia, breast Mental health
cancer, and colorectal cancer, when diagnosed among the ad- Psychological adjustment to cancer survivorship
olescent/young adult population, are biologically distinct Cognitive functioning
Psychopathology
from those diseases in older or younger cohorts.5 In addition
Emotional well-being
to biological differences, adolescents/young adults face a Goal attainment
unique range of psychosocial issues that may affect their care Health-related hindrance
and transition into survivorship. These include geographic Social competence
mobility, concerns about fertility preservation, and isolation Partnerships/marriage
Interpersonal relations
from their peers. A cancer diagnosis during the adolescent/
Reintegration into normative social systems
young adult period often derails academic or vocational goals, Educational progress/need for resources
and can impede the transition to independence that usually Vocational planning
occurs during the young adult years. Because the vast major- Employment
ity of patients diagnosed with cancer as an adolescent/young Health behaviors
Alcohol consumption
adult will go on to be long-term survivors,3 it is important for
Tobacco use
adolescent/young adult cancer patients to have access to pro- Illicit drug Use
grams 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 behavior
cancer face multiple transitions during their cancer jour- Adherence to treatment
ney, from health to a diagnosis of a potentially life-threat- Adherence to health screening/surveillance
ening illness, from diagnosis to treatment, then from Health education
treatment to survivorship or palliation (Fig. 1). In children Diagnostic and treatment history
Cancer-related health risks
and adolescents treated in pediatric cancer centers, there is a Self-management of medical issues
further transition from pediatric to adult care, whereas Impact of health behaviors on cancer-related risks
those adolescents and young adults treated in an adult can- Health screening/surveillance recommendations
Navigation of the adult health care environment
cer center often transition from cancer center-based care to Health care access
care coordinated by a primary care physician. This paper Insurance access
explores these transitions in children and adolescents/
young adults with cancer, with a particular focus on the
transition to survivorship care. For those fortunate patients (eg, cystic fibrosis, diabetes, congenital heart disease).6-10
who survive their cancer, the period of survivorship will However, adolescents/young adults with these chronic
comprise 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 childhood
Young Adults With Cancer cancer are frequently asymptomatic and in good health
Much may be learned by examining the models used in but often have limited knowledge of their prior disease or
the care and transition of other chronic childhood diseases their long-term risks resulting from their disease and
2336 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 visit
education 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 sufficient
the transition process. Educational efforts should begin knowledge about their cancer history and long-term risks to
early 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 are
nosis 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 cancer
diagnosis, initiation of therapy, completion of therapy, on academic or occupational activities and the ability of
entry 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 of
viders 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 process
adults 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 remediate
management of cancer-related complications, and psycho- adverse effects, as well as pertinent health surveillance and
social 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 on
who attended the Workshop on AYA With Cancer: future reproductive health should be considered in all
Towards Better Outcomes in Canada identified the process newly diagnosed adolescent/young adult cancer patients
of transition (from acute care to survivor clinics, from acute/ and followed by appropriate referrals for interventions to
Cancer May 15, 2011 2337

4. Original Article
preserve fertility when possible.16 This topic is addressed limitations in health insurance access and employment
in another article of this Supplement. opportunities are commonly experienced by young adults,
Completion of therapy represents another major which may further complicate adolescent/young adult
milestone for child and adolescent/young adult cancer survivors’ ability to obtain optimal follow-up care.24
patients.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 of
wellness and health maintenance.13 Patients and families transition services for adolescent/young adult survivors in
report considerable anxiety, fears, and vulnerability when this phase of the cancer survivorship spectrum.14 One
treatment 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 educational
with cancer treatment, lifestyle factors that influence these and vocational counseling to teenage survivors, particularly
risks, and health surveillance pertinent to specific cancer those who may have developed learning difficulties as a
treatment modalities that can facilitate timely diagnosis result of their prior cancer or its therapy (eg, survivors of
and remediation of complications. Assessment and sup- brain tumors or acute lymphoblastic leukemia treated with
port 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 or
ience after the cancer experience and the achievement of professional support groups, survivors are frequently
social competence expected during young adulthood.19 unaware of these programs, limiting universal access.
These same interventions continue at transition into
long-term follow-up (typically somewhere from 2 to 5 Models of Adolescent/Young Adult
years after completion of therapy), at which time sus- Survivor Care
tained 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 jurisdiction
survivors 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 into
adult-focused health care provider and environment, account local health system resources. Proposed models
where they are required to assume primary responsibility include cancer center follow-up (by the primary treatment
for 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.15,25,26
independent 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 is
to 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 of
as chronically ill.20,21 Thus, programs for this population intercurrent illness are the responsibility of primary care
must ensure that these perceptions do not obstruct survi- providers. This may post a particular challenge for patients
vors’ 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 to
with 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-term
knowledge to advocate for risk-based cancer-related fol- outcomes, such as those treated for central nervous system
low-up.22 Educating and engaging survivors in self-man- tumors or with hematopoietic cell transplantation, may
agement is difficult, as evidenced by research indicating benefit from indefinite regular follow-up at a cancer
that many survivors do not recognize their risk of serious center. Specialized and separate LTFU clinics are seen as
cancer-related health problems and do not adhere to rec- having advantages over the integration of survivorship
ommended 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 al
rehabilitative, 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 and
the 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 specialists
from 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 distinct
established to LTFU clinics for patients in late adoles- care systems. The UPCON (Uniting Primary Care and
cence diagnosed and treated in the adult oncology system. Oncology) Network links the Manitoba provincial cancer
However, the establishment of specialized LTFU clinics agency with 34 primary care clinics. Each partner clinic
will not be feasible in all Canadian jurisdictions because of has a lead family physician or nurse practitioner who have
lack of institutional capacity, insufficient numbers of eli- been willing to assume the follow-up care of cancer
gible 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 primary
those treated with surgery and chemotherapy alone, as for care provider, it is important for cancer centers to find a
a Wilms tumor, may be transferred to a primary care phy- family physician or nurse practitioner willing to take on
sician for follow-up care after a short period of cancer cen- such patients, rather than having them rely on the use of
ter 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 the
and pediatric cancers, but require follow-up care guide- cancer system electronic medical record and to a program
lines, a cancer treatment summary, and a clear contact of ongoing continuing education about cancer care, thus
person 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 leaders
care plans are an important method for addressing the to work with local universities and medical associations to
challenge 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 by
families, 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 for
based 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 the
summaries and recommendations are presently being Children’s Oncology Group33) and a centralized phone
tested in Canada in a randomized trial in adult breast can- number to the treating cancer center, such as exists in
cer survivors discharged to primary care. Alberta and Manitoba, should also be considered.
For the majority of adolescent/young adult cancer
survivors at intermediate risk for late effects, such as those Current Canadian System for Survivors of
who have received anthracycline-based therapy or radia- Childhood or Adolescent/Young Adult Cancer
tion therapy, a model that features risk-based follow-up The majority of Canadian children who develop cancer
care 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 survivor
visits in a cohort of 121 adult survivors of childhood can- program or clinic dedicated to the care of survivors during
cers. 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 their
oncology.31 A case management model has also been pro- acute care oncology clinics, but do not have a specialized
posed 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 program
Cancer May 15, 2011 2339

6. Original Article
for 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 of
adolescents/young adults who receive their acute cancer survivors will need to be shared between the cancer centers
care in an adult hospital. Thus, there are obvious deficien- and primary care providers in survivors’ communities.
cies in the medical services currently available to survivors
of childhood, adolescent, and young adult cancer that FUNDING SOURCES
vary by region. This deficiency is most apparent among Funding for the national task force on adolescents and young
adolescents/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 by
Opportunities for Research C17; the Advisory Board of the Institute for Cancer Research at the
In parallel to the development of programs for adolescent/ Canadian Institutes for Health Research (CIHR); the Public Health
young 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 the
research 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 Cancer
of 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 Task
care 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 delivery
of these resources. More knowledge is needed about the cost- CONFLICT OF INTEREST DISCLOSURES
effectiveness of regular surveillance for late effects according The authors made no disclosures.
to published guidelines, and the relative costs of providing
such care in a cancer center or primary care setting. Research
that takes advantage of the databases linked to Canada’s pub- REFERENCES
lic health care system is ongoing in British Columbia,36,37 1. Hewitt M, Weiner SL, Simone JV. Childhood Cancer Sur-
vivorship: Improving Care and Quality of Life. Washington,
and survivor projects using Ontario’s cancer registries are DC: National Academies Press; 2003.
underway. There is also a need for better identification of 2. Adolescent and Young Adult Oncology Progress Review
subclinical changes in survivors’ health that precede clinical Group. Closing the Gap: Research and Care Imperatives for
Adolescents and Young Adults with Cancer (NIH Publication
manifestation of late effects of therapy. Detection of subclini- No. 06-6067). Bethesda, MD: Department of Health and
cal disease by imaging or biomarker measurement will allow Human Services, National Institutes of Health, National Can-
for research into interventions designed to change the natural cer Institute, and the LiveStrong Young Adult Alliance; 2006.
3. Canadian Cancer Society’s Steering Committee. Canadian
history of these diseases. Such interventions need not be re- Cancer Statistics 2009. Available at: http://www.cancer.ca/
stricted to pharmacological approaches, but might include Canada-wide/About%20cancer/Cancer%20statistics//
strategies to promote a healthy lifestyle. media/CCS/Canada%20wide/Files%20List/English%20files%
20heading/pdf%20not%20in%20publications%20section/
Stats%202009E%20Cdn%20Cancer.ashx Accessed July 9,
Conclusions 2010.
Excellent survival rates for children and adolescents/ 4. Altekruse S, Kosary CL, Krapcho M, et al, eds. SEER Can-
young adults with cancer have led to a growing population cer Statistics Review, 1975-2007 (based on November 2009
SEER data submission, posted to the SEER web site, 2010).
of cancer survivors with many potential years of life ahead Bethesda, MD: National Cancer Institute; 2010.
of them. There is broad consensus that these survivors 5. Bleyer A, Barr R, Hayes-Lattin B, Thomas D, Ellis C,
require lifelong care that focuses not only on the medical Anderson B. The distinctive biology of cancer in adolescents
and young adults. Nat Rev Cancer. 2008;8:288-298.
risks that arise from their cancer and its therapy, but also on 6. A consensus statement on health care transitions for young
the psychosocial, educational, and vocational implications adults with special health care needs. Pediatrics. 2002;110:
of surviving cancer. The availability of resources for survi- 1304-1306.
vors varies by geography, health care system, and survivor 7. Cameron JS. The continued care of children with renal dis-
ease into adult life. Pediatr Nephrol. 2001;16:680-685.
characteristics. Survivors who receive their care outside of a 8. Knauth A, Verstappen A, Reiss J, Webb GD. Transition
pediatric cancer center have particularly limited access. and transfer from pediatric to adult care of the young adult
2340 Cancer May 15, 2011

7. Transition and Survivorship/Nathan et al
with complex congenital heart disease. Cardiol Clin. 2006; 24. White PH. Access to health care: health insurance considera-
24:619-629, vi. tions for young adults with special health care needs/disabil-
9. McDonagh JE. Transition of care from paediatric to adult ities. Pediatrics. 2002;110:1328-1335.
rheumatology. Arch Dis Child. 2007;92:802-807. 25. Oeffinger KC, McCabe MS. Models for delivering survivor-
10. Nasr SZ. Cystic fibrosis in adolescents and young adults. ship care. J Clin Oncol. 2006;24:5117-5124.
Adolesc Med. 2000;11:589-603. 26. Prasad PK, Bowles T, Friedman DL. Is there a role for a
11. Bashore L. Childhood and adolescent cancer survivors’ specialized follow-up clinic for survivors of pediatric cancer?
knowledge of their disease and effects of treatment. J Pediatr Cancer Treat Rev. 2010;36:372-376.
Oncol Nurs. 2004;21:98-102. 27. Wallace WH, Blacklay A, Eiser C, et al. Developing strat-
12. Kadan-Lottick NS, Robison LL, Gurney JG, et al. Child- egies for long term follow up of survivors of childhood can-
hood cancer survivors’ knowledge about their past diagnosis cer. BMJ. 2001;323:271-274.
and treatment: Childhood Cancer Survivor Study. JAMA. 28. Del Giudice ME, Grunfeld E, Harvey BJ, Piliotis E, Verma
2002;287:1832-1839. S. Primary care physicians’ views of routine follow-up care
13. Hudson MM. A model for care across the cancer contin- of cancer survivors. J Clin Oncol. 2009;27:3338-3345.
uum. Cancer. 2005;104:2638-2642. 29. Blaauwbroek R, Zwart N, Bouma M, Meyboom-de Jong B,
14. Freyer DR. Transition of care for young adult survivors of Kamps WA, Postma A. The willingness of general practi-
childhood and adolescent cancer: rationale and approaches. tioners to be involved in the follow-up of adult survivors of
J Clin Oncol. 2010;28:4810-4818. childhood cancer. J Cancer Surviv. 2007;1:292-297.
15. Friedman DL, Freyer DR, Levitt GA. Models of care for 30. Hewitt M, Greenfield S, Stovall E. From Cancer Patient to
survivors of childhood cancer. Pediatr Blood Cancer. 2006; Cancer Survivor: Lost in Transition. Washington, DC:
46:159-168. National Academies Press; 2005.
16. Lee SJ, Schover LR, Partridge AH, et al. American 31. Blaauwbroek R, Tuinier W, Meyboom-de Jong B, Kamps
Society of Clinical Oncology recommendations on fertility WA, Postma A. Shared care by paediatric oncologists and
preservation in cancer patients. J Clin Oncol. 2006;24:2917- family doctors for long-term follow-up of adult childhood
2931. cancer survivors: a pilot study. Lancet Oncol. 2008;9:232-238.
17. MacLean WE Jr, Foley GV, Ruccione K, Sklar C. Transi- 32. Sisler J, McCormack-Speak P. Bridging the gap between pri-
tions in the care of adolescent and young adult survivors of mary care and the cancer system: the UPCON Network of
childhood cancer. Cancer. 1996;78:1340-1344. CancerCare Manitoba. Can Fam Physician. 2009;55:273-278.
18. Nagel K, Eves M, Waterhouse L, et al. The development of 33. Children’s Oncology Group. Long-term follow-up guide-
an off-therapy needs questionnaire and protocol for survivors lines for survivors of childhood, adolescent and young
of childhood cancer. J Pediatr Oncol Nurs. 2002;19:229-233. adult cancers, Version 3.0. Arcadia, CA: Children’s Oncol-
19. Kazak AE, Derosa BW, Schwartz LA, et al. Psychological ogy Group. October 2008. Available at: http://www.
outcomes and health beliefs in adolescent and young adult survivorshipguidelines.org.
survivors of childhood cancer and controls. J Clin Oncol. 34. Barr RD, Greenberg ML. Cancer surveillance and control in
2010;28:2002-2007. adolescents—similarities and contrasts between Canada and
20. Mertens AC, Cotter KL, Foster BM, et al. Improving health the United States. Pediatr Blood Cancer. 2006;46:273-277.
care for adult survivors of childhood cancer: recommenda- 35. Ristovski-Slijepcevic S, Barr R, Bernstein M, Nathan PC. A
tions from a Delphi panel of health policy experts. Health cross-Canada survey of clinical programs for the care of sur-
Policy. 2004;69:169-178. vivors of cancer in childhood and adolescence. Pediatr Child
21. Zebrack BJ, Eshelman DA, Hudson MM, et al. Health care Health. 2009;14:375-378.
for childhood cancer survivors: insights and perspectives 36. Lorenzi M, McMillan AJ, Siegel LS, et al. Educational out-
from a Delphi panel of young adult survivors of childhood comes among survivors of childhood cancer in British Co-
cancer. Cancer. 2004;100:843-850. lumbia, Canada: report of the Childhood/Adolescent/Young
22. Landier W, Wallace WH, Hudson MM. Long-term follow- Adult Cancer Survivors (CAYACS) Program. Cancer. 2009;
up of pediatric cancer survivors: education, surveillance, and 115:2234-2245.
screening. Pediatr Blood Cancer. 2006;46:149-158. 37. MacArthur AC, Spinelli JJ, Rogers PC, Goddard KJ, Phillips
23. Nathan PC, Greenberg ML, Ness KK, et al. Medical care in N, McBride ML. Risk of a second malignant neoplasm among
long-term survivors of childhood cancer: a report from the child- 5-year survivors of cancer in childhood and adolescence in Brit-
hood cancer survivor study. J Clin Oncol. 2008;26:4401-4409. ish Columbia, Canada. Pediatr Blood Cancer. 2007;48:453-459.
Cancer May 15, 2011 2341