Accepted Manuscript Emerging Issues Among Adolescent and Young Adult Cancer Survivors Pandora Patterson , PhD, Fiona E.J. McDonald , PhD, Brad Zebrack , PhD, Sharon Medlow , PhD PII:

S0749-2081(14)00092-8

DOI:

10.1016/j.soncn.2014.11.006

Reference:

YSONU 50676

To appear in:

Seminars in Oncology Nursing

Please cite this article as: Patterson P, McDonald FEJ, Zebrack B, Medlow S, Emerging Issues Among Adolescent and Young Adult Cancer Survivors, Seminars in Oncology Nursing (2015), doi: 10.1016/ j.soncn.2014.11.006. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

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Emerging Issues Among Adolescent and Young Adult Cancer Survivors

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Pandora Patterson, PhDa, b a CanTeen Australia, L11, 130 Elizabeth St.,Sydney, New South Wales, 2000, Australia GPO Box 3821, Sydney, New South Wales, 2001, Australia b Cancer Nursing Research Unit, The University of Sydney, Sydney, New South Wales, 2006, Australia [email protected] (612) 9007 0215

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Fiona E. J. McDonald, PhDa CanTeen Australia, L11, 130 Elizabeth St.,Sydney, New South Wales, 2000, Australia GPO Box 3821, Sydney, New South Wales, 2001, Australia [email protected] (612) 9007 0215

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Brad Zebrack, PhDc University of Michigan School of Social Work, 1080 S. University, Ann Arbor, Michigan, 48109-1106, USA, [email protected] (734) 615-5940

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Sharon Medlow, PhDa a CanTeen Australia, L11, 130 Elizabeth St.,Sydney, New South Wales, 2000, Australia GPO Box 3821, Sydney, New South Wales, 2001, Australia [email protected]

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Corresponding Author: Brad Zebrack, University of Michigan School of Social Work, 1080 S. University, Ann Arbor, MI, 48109-1106, USA, [email protected], (734) 615-5940

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ABSTRACT

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Objectives. To review the characteristics of cancer in the adolescence and young adult age group; the medical, psychosocial and behavioral late effects; survivorship care planning and transition; current research priorities; and practice implications. Data source: Published articles, research studies and position statements.

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Conclusion. Survivors of adolescents and young adults (AYA) cancer are confronted with the dual demands of managing their transition to an independent adult concurrently with their transition from cancer patient to survivor, with an associated reduction in support from medical services. AYA survivors also face complex medical, psychosocial and behavioral late effects, including fertility and mental health issues.

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Implications for Nursing Practice. An understanding of the impact of a cancer diagnosis on this age group including their ability to reintegrate into ‘normal’ life and potential long term consequences is necessary to provide the best support. This care and support can be enhanced through multidisciplinary teams who work together to address the medical and psychosocial needs of AYAs diagnosed with cancer.

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Keywords: Psychosocial, adolescent, young adult, survivor

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Adolescence and young adulthood are exciting yet challenging stages of life involving rapid physical, emotional, cognitive, and social maturation. While generally a period of peak health, approximately one million new cases of cancer occur worldwide among 15 to 39 year olds.1

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After suicide, poisoning, and accidental death by injury, cancer is the leading cause of death for adolescents and young adults (AYAs).2,3 While most AYAs survive cancer, many experience significant life disruptions during treatment as well as for months or years after cessation of

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therapies. Emerging research and clinical care guidelines suggest that the medical and

psychosocial needs of AYAs are distinct from those of younger children and older adults.4,5

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In this article, we define and distinguish the unique characteristics and needs of AYAs in treatment and survivorship, offer recommendations for clinical care, and conclude with an overview of research priorities for this unique age-defined population. AYA Defined

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Who are they?

Adolescent and young adult oncology is increasingly being recognized as a sub-specialty distinguishable from pediatric and adult oncology in terms of incidence,1,3,6 tumor types,7

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psychosocial characteristics and health service needs.8,9 The age parameters are variously defined as extending from 15 years of age up to age 24,10 29,11 or 39-40 years.12 These variations have

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implications for clinical care and the interpretation of AYA cancer research, particularly with regard to prevalence statistics and the diversity of tumor types across the AYA age-spectrum.13 For example, among 15 to 19 year olds, 82% of cancer cases are non-epithelial cancers (e.g. central nervous system tumors, Hodgkin and non-Hodgkin lymphoma, leukemia, melanoma of the skin, testicular cancer), while among 45 to 49 year olds, 81% of cancer cases are epithelial cancers (e.g. cervical, breast, thyroid, ovarian tumours) .14 Cross-over from a predominance of

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non-epithelial to epithelial cancers occurs at approximately 30 years, but varies between the sexes, with females exhibiting a greater proportion of epithelial cancers approximately fifteen years earlier than males.14 Differing upper age limits between

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countries for AYAs therefore impacts which cancers are identified as being most

prevalent. 15 Recent global estimations indicate that new diagnoses of cancer occur at

almost double the incidence rate among 30-39 year olds as compared to 15 to 29 year

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olds.1

Evidence is growing that AYA cancers have unique biological characteristics differentiating

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them from cancers of the ‘same’ type occurring in other age cohorts.6,16-19 For example, acute lymphoblastic leukemia (ALL) and acute myelogenous leukemia (AML) diagnosed in AYAs exhibit “… either normal cytogenetics, yet-to-be-characterised (unknown) abnormalities, or other karyotypes that are rare in younger and older persons.”17, p.5 Emerging findings about the

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biological differences between AYA cancers and those of other age groups have implications for AYA cancer research and therapeutic interventions. Also critical for the characterization of AYAs with cancer is recognition of the life stage at

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which diagnosis occurs; a period of significant psychosocial development and maturation with regard to increasing autonomy and independence, identity development, greater responsibility for

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finances, peer relationships, emotional and sexual intimacy, education, careers, and selfsustaining employment.5,9,20 The cognitive and emotional capacities to express and explain themselves, make independent decisions, and comply with health recommendations are yet to be fully developed at this life stage.5 Coping with these typical developmental challenges complicate, and are complicated by, a cancer diagnosis and treatment in ways that differ from the experiences of younger children and older adults.4,8

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Distinguishing AYAs with cancer and AYA survivors of childhood cancer Young people diagnosed with cancer as AYAs are distinguishable from young adult survivors of childhood cancer but are often combined in a single population group in clinical

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trials and observational studies, thus confounding analyses.21,22 Nonetheless, in a study of second primary malignancies, 57% occurred in survivors of AYA cancer, while 43% occurred in

survivors of childhood cancers.23 Additionally, AYA survivors of brain tumors have different

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concerns from AYA survivors of childhood brain tumors, including cognitive decline (versus failure to acquire cognitive skills) and a greater need to protect parents from worry.24

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Medical, Psychosocial, and Behavioral Late effects

AYA survivors face a range of long-term medical and psychosocial late effects attributable to cancer type, treatment, and the effects of interrupted developmental processes upon cognitive and social outcomes. Well known medical late effects include: a heightened risk

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for younger patients (0 to 39 years compared with patients 40 years and above) of developing second primary malignancies after treatment;21,25 treatment-related cardiotoxicity requiring longterm follow-up and risk modification;21,25 the ongoing consequences of amputation;25 greater risk

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of potentially life-threatening chronic medical conditions (compared to siblings and the general population with no cancer history);21,26 a heightened risk of non-cancer mortality, especially

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from circulatory and respiratory diseases;27 and, increased rates of diminished fertility (estimated as being in excess of 80% of both female and male cancer patients).28-31 Infertility is an example of a medical problem that also presents as a psychosocial concern with complex management challenges for AYAs, many of whom have not started families or are too young to have put serious thought into future parenthood.32 While it is regularly emphasised that appropriate referrals to fertility specialists should be considered a standard component of

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any AYA cancer treatment plan,29,30,33 evidence suggests that discussions about fertility are hampered by a number of factors including health care professionals’ gaps in knowledge, their discomfort around financial costs for patients, and the urgency for treatment to commence.34-37

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Young patients’ feelings of embarrassment about discussing sex in front of their parents28 or discussing sperm storage with health care workers36,38 can also act as obstacles.

Inadequate discussion of fertility issues with AYAs undergoing cancer treatment results in

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uncertain knowledge about the likelihood of fertility having been compromised,39 significant concern about future prospects for becoming a parent,29 and distress about the possibility of

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passing on a greater risk of health problems to children, even when such concerns are unfounded.31,39 These concerns can impact upon AYAs’ need to feel ‘normal,’20,32 and re-emerge years beyond the cessation of therapy when AYAs begin to consider family planning.32,40 Survivors of both childhood and AYA cancer carry the added burden of concern about reactions

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of intimate partners to their infertility or diminished fertility, and must negotiate when and how to initiate discussions about this possibility.32

AYA cancer patients and survivors are at heightened risk of a range of clinically relevant

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psychological late effects41 compared with matched controls who have no history of cancer42 or sibling comparison groups.43 This is particularly the case for posttraumatic stress in both males

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and females, and depression and anxiety in females.42 Interestingly, levels of AYA psychological distress do not appear to correlate with the severity of the cancer diagnosis, but are distributed equally among AYAs with a diagnoses of low, medium or high rates of survival.44 Changes in cognitive ability have been observed that impact upon AYAs’ capacity to return to their pre-diagnosis activities and regain a sense of normalcy. AYA survivors of brain tumors report subjective concerns about cognitive decline and memory dysfunction,24 while survivors of

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AYA cancer more generally report a number of cognitive, emotional and practical barriers to returning to school, education or work.45-48 Perceived barriers to employment are reflected in large-scale surveillance statistics in the United States where 24% of AYA cancer survivors

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reported being out of work or unable to work, compared with 14% of respondents with no cancer history.26

Findings from research on whether AYA cancer survivors are more or less likely than age-

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matched peers to engage in health-risk behaviors are mixed, with a recent review indicating that survivors’ rates of smoking and alcohol use are lower than the general population.49 By contrast,

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a recent large-scale survey comparing AYA cancer survivors with the general population in the United States showed that more survivors were current smokers (26% vs 18%), obese (31% vs 27%), and had engaged in no leisure time physical activity in the previous month (31% vs 24%), when compared with respondents with no cancer history. No differences were observed between

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the two groups with regard to binge drinking or poor nutrition.26 Survivors of childhood and adolescent cancer have also demonstrated poor compliance with recommended guidelines for revaccination, despite their added vulnerability to communicable diseases.50 Also of concern is

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sexual behavior with regard to risks for pregnancy complications, unintended pregnancies, and sexually transmitted infections.51

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Survivorship Care Planning and Transitions In consideration of the medical late effects of cancer and its treatment as outlined, one of the key tasks for preparing AYA cancer patients transitioning into off-treatment survivorship is the promotion of lifelong surveillance and harm-minimizing behaviors. This can be achieved through the development and provision of educational and lifestyle interventions for survivors,52 and through training for health care providers who might otherwise be unfamiliar with the

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sequelae of cancer diagnosed in youth.4,53 Considering that most general practitioners may only encounter an AYA with cancer once in a professional lifetime,10 it becomes clear that greater advocacy is required to boost awareness of AYA cancer, and survivors must be empowered to

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understand their own treatment histories.54,55 The primary cancer treatment team plays a critical role in providing education and a survivorship treatment plan to adult health care providers,

potential problems to monitor into the future.4,56

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including details of the patient’s diagnostic and treatment history, current health status, and

One of the most challenging aspects of transition into survivorship is the cessation of

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intensive support as AYAs move into general or primary care settings, take greater responsibility for decision making and initiate ongoing health care.48 AYAs and their families can feel abandoned and unprepared for the post-treatment phase which typically involves institutional transition and larger gaps in time between contact with medical staff.48,56 With limited access to

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cancer specialists post-treatment, AYA survivors may be left alone with no-one to allay their concerns about receiving follow-up care from physicians who may not be familiar with biomedical and psychosocial needs of cancer survivors.48

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Returning to or creating a ‘normal’ life post-treatment can represent an immense challenge for AYA survivors, many of whom have forgone normal education and work during treatment,57 and

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some of whom are unable to return to their previous occupations or study due to physical or cognitive changes (e.g. amputation or acquired attentional deficits).45,57 Financial concerns for AYAs and their families rank high both in terms of meeting the cost of treatment and uncertainty about future prospects for gainful employment.48,57,58 Interruptions in social relationships during treatment can leave AYA cancer survivors feeling marginalized and may create problems when returning to school and reintegrating with peers.4,57

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Implications for Health Care Providers/Nursing Practice Providing health care to AYAs with cancer requires multidisciplinary teams that bring together medical, psychosocial and nursing expertise. From initial diagnosis to long-term follow-

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up, AYAs have medical, psychosocial and information needs that evolve as treatment progresses and they become increasingly responsible for their own health care and other life decisions. Providing age-appropriate health care to AYAs with cancer involves the dual aspects of

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identifying and understanding the young people’s level of cognitive, emotional and biological maturity, alongside the equally important recognition of the interruption that treatment imposes

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upon young people’s physical and psychosocial growth and development.9,20,59 Health care professionals play a critical role in guiding and supporting AYAs and their families as they adjust to the perplexing array of in-patient and out-patient services, the complexities of treatment plans, and arrangements for post-treatment care, either in survivorship or at end of life.48,60

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All staff who come into contact with AYAs and their families will potentially be regarded as sources of information about everything from the cancer, to prospects for survival and recovery, impacts of cancer upon fertility, late effects, changes in physical appearance, diet and nutrition,

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psychosocial concerns, and re-integration into ‘normal’ life.24,45,61 Providing sufficient and accurate information to AYAs with cancer can be difficult as they may not voice their concerns,

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preferring to have information and advice offered to them.62 Additionally, staff may feel underinformed about the topics that arise34,35,37 and young people can be sensitive to the way in which information is presented to them,9,38,62 requiring superior staff communication skills. Some of these difficulties may be lessened through ongoing training for health care providers about AYA treatment and support needs,62 through increased use of AYA-specific screening and assessment tools,33,63 and clinical guidelines64,65 that help attune staff to best practices.

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Priorities for AYA Cancer Research In the past decade, the existing practice of applying knowledge extrapolated from pediatric and adult cancer research to AYAs with cancer has been challenged from a

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number of angles.66,67 Viable alternatives for AYA-specific cancer research and

healthcare delivery have been advocated internationally through the development of

position statements and research priorities10,55,68-70 and specialized youth cancer services

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have been implemented in various locations.10,71 This increased awareness of the specific

and survivorship research that include:

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needs of AYAs with cancer has helped to identify international priorities of AYA cancer

• AYAs’ unique medical, psychosocial and healthcare delivery needs; • the lack of survival improvement for AYAs compared with older and younger patients; • delays in initial diagnosis and subsequent referral;

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• extremely low rates of AYA clinical trial participation;

• the development of tools for studying the AYA cancer population; • gaps in knowledge about AYA cancer late effects, their surveillance and treatment;

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• the need for AYA cancer advocacy to promote awareness of signs and symptoms among health care providers and the general community;

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• short-comings in medical transitions across the continuum of an AYA cancer diagnosis; • access to targeted psychosocial support at all stages of diagnosis; and • the extent to which AYA specific services ‘add-value’ and are financially viable compared to more traditional modes of health care delivery.

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Conclusion Medical management of AYA cancer patients and survivors involves a number of principles of care that balance the young people’s need for expert medical treatment and their

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ongoing pursuit of the developmental milestones that characterize emerging adulthood.20,72,73 The relative importance of these two objectives can be better understood by including the voices of young people themselves.58,61,73 The kinds of decisions (medical versus social) for which

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AYAs with cancer are deemed to be responsible varies with age and stage of treatment or

survivorship.5,74 There is potential to develop or improve AYA health programs that address the

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following: improvement of screening practices;75 practices to promote treatment adherence;76,77 policy around confidential health care, where AYAs are given the opportunity to communicate with doctors independently of parents;72 routine psychosocial assessment, facilitating health care workers’ understanding of the needs of individual patients and monitoring cognitive deficits and

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high-risk behaviors;43,63 flexibility in health care delivery, in recognition of the inappropriateness of treating AYAs in facilities designed for either young children or geriatrics;20,78 facilitating social interaction with other young people (both healthy peers and survivors);5,20 and

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developmentally appropriate information resources about disease, survivorship, late effects,

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education, vocation and finances.20,61,78

References 1. 2. 3. 4.

Barr RD. Adolescents, young adults, and cancer—the international challenge. Cancer. 2011;117(S10):2245-2249. Bleyer A, Barr R. Cancer in Young Adults 20 to 39 Years of Age: Overview. Semin Oncol. 2009;36(3):194-206. Australian Institute of Health & Welfare. Cancer in Adolescents and Young Adults in Australia. Cancer series no. 62. Cat. no. CAN 59. Canberra: AIHW; 2011. Wilkins KL, D’Agostino N, Penney AM, Barr RD, Nathan PC. Supporting adolescents and young adults with cancer through transitions: Position statement trom the Canadian

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10.

11. 12. 13. 14.

15.

16. 17. 18. 19. 20.

21.

22.

RI PT

SC

9.

M AN U

8.

TE D

7.

EP

6.

AC C

5.

Task Force on Adolescents and Young Adults With Cancer. J Pediat Hematol/Oncol. 2013;36(7):545-551. Zebrack B, Isaacson S. Psychosocial care of adolescent and young adult patients with cancer and survivors. J Clin Oncol. 2012;30(11):1221-1226. Bleyer A, O'Leary M, Barr R, Ries L, eds. Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age, Including SEER Incidence and Survival: 19752000. Bethesda, MD: National Cancer Institute, NIH Pub. No. 06-5767; 2006. Bleyer WA. Cancer in older adolescents and young adults: epidemiology, diagnosis, treatment, survival, and importance of clinical trials. Med Pediat Oncol. 2002;38(1):1-10. Epelman CL. The adolescent and young adult with cancer: state of the art -- psychosocial aspects. Curr Oncol Rep. 2013;15(4):325-331. Patterson P, Millar B, Desille N, McDonald FEJ. The unmet needs of emerging adults with a cancer diagnosis: A qualitative study. Cancer Nurs. 2012;35(3):E32-E40. Fern L, Whelan J. National Cancer Research Institute Teenage and Young Adult Clinical Studies Group: The United Kingdom approach to research. International perspectives on AYAO, Part 4. Journal of Adolescent and Young Adult Oncology. 2013;2(4):161-166. Rainusso N, Wang LL, Yustein JT. The adolescent and young adult with cancer: state of the art -- bone tumors. Current Oncology Reports. 2013;15(4):296-307. Livestrong & NCI AYAO Progress Review Group. Closing the Gap: A Strategic Plan: U.S Department of Health and Human Services; 2006. What should the age range be for AYA oncology? Journal of Adolescent and Young Adult Oncology. 2011;1(1):3-10. Wu X, Groves FD, McLaughlin CC, Jemal A, Martin J, Chen VW. Cancer incidence patterns among adolescents and young adults in the United States. Cancer Causes & Control. 2005;16(3):309-320. Howlader N, Noone AM, Krapcho M, et al. SEER Cancer Statistics Review, 1975-2008. 2011; http://seer.cancer.gov/csr/1975_2008/, based on November 2010 SEER data submission, posted to the SEER web site, 2011. Murphy MFG, Bithell JF, Stiller CA, Kendall GM, O'Neill KA. Childhood and adult cancers: contrasts and commonalities. Maturitas. 2013;76(1):95-98. Bleyer A. Adolescent and young adult (AYA) cancers: distinct biology, different therapy? Cancer Forum. 2009;33(1):4-10. Bleyer A, Barr R, Hayes-Lattin B, Thomas D, Ellis C, Anderson B. The distinctive biology of cancer in adolescents and young adults. Nat. Rev. Cancer. 2008;8(4):288-298. Bernstein ML. Targeted therapy in pediatric and adolescent oncology. Cancer. 2011;117(S10):2268-2274. D'Agostino NM, Penney A, Zebrack B. Providing developmentally appropriate psychosocial care to adolescent and young adult cancer survivors. Cancer. 2011;117(S10):2329-2334. Mulrooney DA, Dover DC, Li S, et al. Twenty years of follow-up among survivors of childhood and young adult acute myeloid leukemia: A report from the childhood cancer survivor study. Cancer. 2008;112(9):2071-2079. de Sa BCS, Rezze GG, Scramim AP, Landman G, Neves RI. Cutaneous melanoma in childhood and adolescence: retrospective study of 32 patients. Melanoma Research. 2004;14(6):487-492.

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28.

29.

30.

31.

32.

33. 34.

35. 36.

37.

38.

RI PT

SC

27.

M AN U

26.

TE D

25.

EP

24.

Hammal DM, Bell CL, Craft AW, Parker L. Second primary tumors in children and young adults in the North of England (1968-99). Pediatric Blood & Cancer. 2005;45(2):155-161. D'Agostino NM, Edelstein K. Psychosocial challenges and resource needs of young adult cancer survivors: Implications for program development. Journal of Psychosocial Oncology. 2013;31(6):585-600. Soliman H, Agresta Sv. Current issues in adolescent and young adult survivorship. Cancer Control. 2008;15(1):55-62. Tai E, Buchanan N, Townsend J, Fairley T, Moore A, Richardson LC. Health status of adolescent and young adult cancer survivors. Cancer. 2012;118(19):4884-4891. Prasad PK, Signorello LB, Friedman DL, Boice JD, Jr., Pukkala E. Long-term noncancer mortality in pediatric and young adult cancer survivors in Finland. Pediatric Blood & Cancer. 2012;58(3):421-427. Knapp CA, Quinn GP, Murphy D. Assessing the reproductive concerns of children and adolescents with cancer: Challenges and potential solutions. Journal of Adolescent and Young Adult Oncology. 2011;1(1):31-35. Daneshmand S, Djaladat H, Porter CR, Nichols C. Evaluation and preservation of fertility in patients with testicular cancer. Journal of Adolescent and Young Adult Oncology. 2011;1(1):25-29. Stern CJ, Toledo MG, Gook DA, Seymour JF. Fertility preservation in female oncology patients. Australian and New Zealand Journal of Obstetrics and Gynaecology. 2006;46(1):15-23. Metzger ML, Meacham LR, Patterson B, et al. Female reproductive health after childhood, adolescent, and young adult cancers: guidelines for the assessment and management of female reproductive complications. Journal of Clinical Oncology. 2013;31(9):1239-1247. Crawshaw MA, Sloper P. 'Swimming against the tide' - the influence of fertility matters on the transition to adulthood or survivorship following adolescent cancer. European Journal of Cancer Care. 2010;19(5):610-620. CanTeen. Adolescent and Young Adult Oncology Psychosocial Care Manual. Australia: CanTeen; 2011. King L, Quinn GP, Vadaparampil ST, et al. Oncology social workers' perceptions of barriers to discussing fertility preservation with cancer patients. Social Work in Health Care. 2008;47(4):479-501. Nagel K, Neal M. Discussions regarding sperm banking with adolescent and young adult males who have cancer. Journal of Pediatric Oncology Nursing. 2008;25(2):102-106. Ogle SK, Hobbie WL, Carlson CA, Meadows AT, Reilly MM, Ginsberg JP. Sperm banking for adolescents with cancer. Journal of Pediatric Oncology Nursing. 2008;25(2):97-101. Thompson K, Dyson G, Holland L, Joubert L. An exploratory study of oncology specialists' understanding of the preferences of young people living with cancer. Social Work in Health Care. 2013;52(2-3):166-190. Chapple A, Salinas M, Ziebland S, McPherson A, Macfarlane A. Fertility issues: The perceptions and experiences of young men recently diagnosed and treated for cancer. Journal of Adolescent Health. 2007;40(1):69-75.

AC C

23.

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44.

45.

46. 47.

48.

49. 50.

51.

52. 53.

54.

55.

RI PT

SC

43.

M AN U

42.

TE D

41.

EP

40.

Zebrack BJ, Casillas J, Nohr L, Adams H, Zeltzer LK. Fertility issues for young adult survivors of childhood cancer. Psychooncology. 2004;13(10):689-699. Carpentier MY, Fortenberry J. Romantic and sexual relationships, body image, and fertility in adolescent and young adult testicular cancer survivors: A review of the literature. Journal of Adolescent Health. 2010;47(2):115-125. Sansom-Daly UM, Wakefield CE, Bryant RA, et al. Online group-based cognitivebehavioural therapy for adolescents and young adults after cancer treatment: a multicenter randomised controlled trial of Recapture Life-AYA. BMC Cancer. 2012;12:339. Seitz DCM, Besier T, Debatin K-M, et al. Posttraumatic stress, depression and anxiety among adult long-term survivors of cancer in adolescence. European Journal of Cancer. 2010;46(9):1596-1606. Yeo MS-M, Sawyer SM. Psychosocial assessment for adolescents and young adults with cancer. Cancer Forum. 2009;33(1):18-22. Kwak M, Zebrack BJ, Meeske KA, et al. Trajectories of psychological distress in adolescent and young adult patients with cancer: A 1-year longitudinal study. Journal of Clinical Oncology. 2013;31(17):2160-2166. McLoone JK, Wakefield CE, Butow P, Fleming C, Cohn RJ. Returning to school after adolescent cancer: A qualitative examination of australian survivors' and their families' perspectives. Journal of Adolescent and Young Adult Oncology. 2011;1(2):87-94. Millar B, Patterson P, Desille N. Emerging adulthood and cancer: How unmet needs vary with time-since-treatment. Palliative & Supportive Care. 2010;8(2):151-158. Parsons HM, Harlan LC, Lynch CF, et al. Impact of cancer on work and education among adolescent and young adult cancer survivors. Journal of Clinical Oncology. 2012;30(19):2393-2400. Thompson K, Palmer S, Dyson G. Adolescents & young adults: Issues in transition from active therapy into follow-up care. European Journal of Oncology Nursing. 2009;13(3):207-212. Rabin C. Review of health behaviors and their correlates among young adult cancer survivors. Journal of Behavioral Medicine. 2011;34(1):41-52. Crawford NW, Heath JA, Ashley D, Downie P, Buttery JP. Survivors of childhood cancer: an Australian audit of vaccination status after treatment. Pediatr. Blood Cancer. Jan 2010;54(1):128-133. Murphy D, Klosky JL, Termuhlen A, Sawczyn KK, Quinn GP. The need for reproductive and sexual health discussions with adolescent and young adult cancer patients. Contraception. 2013;88(2):215-220. Hudson MM, Patte C. Education and health promotion in adolescent and young adult cancer survivors. Pediatric Blood & Cancer. 2008;50(5):1105-1108. Nathan PC, Hayes-Lattin B, Sisler JJ, Hudson MM. Critical issues in transition and survivorship for adolescents and young adults with cancers. Cancer. 2011;117(10 Suppl):2335-2341. McGoldrick D, Gordon P, Whiteson M, Adams H, Rogers P, Sutcliffe S. Awareness and advocacy for adolescents and young adults with cancer. Cancer. 2011;117(S10):23112315. McGoldrick D, Neal C, Whiteson M. Advocacy and adolescent/young adult cancer survivors. Pediatr. Blood Cancer. 2008;50(5 Suppl):1109-1111.

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57.

Freyer DR, Kibrick-Lazear R. In sickness and in health: transition of cancer-related care for older adolescents and young adults. Cancer. 2006;107(7 Suppl):1702-1709. Wakefield CE, McLoone J, Butow P, Lenthen K, Cohn RJ. Support after the completion of cancer treatment: perspectives of Australian adolescents and their families. European Journal of Cancer Care. 2013;22(4):530-539. Zebrack B, Bleyer A, Albritton K, Medearis S, Tang J. Assessing the health care needs of adolescent and young adult cancer patients and survivors. Cancer. 2006;107(12):29152923. Zebrack BJ. Psychological, social, and behavioral issues for young adults with cancer. Cancer. 2011;117(S10):2289-2294. Wein S, Pery S, Zer A. Role of palliative care in adolescent and young adult oncology. Journal of Clinical Oncology. 2010;28(32):4819-4824. Zebrack B. Information and service needs for young adult cancer survivors. Supportive Care in Cancer. 2009;17(4):349-357. Palmer S, Mitchell A, Thompson K, Sexton M. Unmet needs among adolescent cancer patients: a pilot study. Palliative & Supportive Care. 2007;5(2):127-134. Palmer S, Patterson P, Thompson K. A national approach to improving adolescent and young adult (AYA) oncology psychosocial care: The development of AYA-specific psychosocial assessment and care tools. Palliative & Supportive Care. 2013;FirstView:16. Clinical Oncological Society of Australia. Psychosocial management of AYAs diagnosed with cancer: Guidance for health professionals. http://wiki.cancer.org.au/australia/COSA:Psychosocial_management_of_AYA_cancer_p atients. Accessed 28 July 2014. CanTeen Australia. Supporting adolescent and young adult siblings of cancer patients: the family context. Research to Practice Paper. Sydney: CanTeen Australia: https://www.canteen.org.au/health-professionals/research-and-evaluation/best-practiceprojects/research-to-practice-paper-issue-1/ Accessed 28 July 2014; 2011. Thomas DM, Seymour JF, O'Brien T, Sawyer SM, Ashley DM. Adolescent and young adult cancer: a revolution in evolution? Internal Medicine Journal. 2006;36(5):302-307. Tonorezos ES, Oeffinger KC. Research challenges in adolescent and young adult cancer survivor research. Cancer. 2011;117(S10):2295-2300. Adolescent and Young Adult Oncology Progress Review Group. Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer: U.S Department of Health and Human Services; 2006. CanTeen. Determining Research Priorities for Adolescent and Young Adult Cancer in Australia. Australia: CanTeen; 2014. Medlow S, Patterson P. Determining research priorities for adolescent and young adult cancer in Australia. submitted. Osborn M, Little C, Bowering S, Orme L. Youth Cancer Services in Australia: Development and implementation. International perspectives on AYAO, Part 3. Journal of Adolescent and Young Adult Oncology. 2013;2(3):118-124. Yeo MS-M, Sawyer S. Chronic illness in young people. In: Kang M, Skinner S, Sanci L, Sawyer S, eds. Youth Health and Adolescent Medicine. Melbourne: IP Communications; 2013.

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Zebrack BJ, Mills J, Weitzman TS. Health and supportive care needs of young adult cancer patients and survivors. Journal of Cancer Survivorship. 2007;1(2):137-145. Wakefield CE, McLoone JK, Fleming CAK, et al. Adolescent cancer and health-related decision-making: An Australian multi-perspective family analysis of appointment attendance and involvement in medical and lifestyle choices. Journal of Adolescent and Young Adult Oncology. 2011;1(4):173-180. Bryant H. Screening for cancer in children, adolescents, and young adults. Cancer. 2011;117(S10):2275-2280. Butow P, Palmer S, Pai A, Goodenough B, Luckett T, King M. Review of adherencerelated issues in adolescents and young adults with cancer. Journal of Clinical Oncology. 2010;28(32):4800-4809. Kondryn HJ, Edmondson CL, Hill J, Eden TOB. Treatment non-adherence in teenage and young adult patients with cancer. The lancet oncology. 2011;12(1):100-108. Cancer Australia, CanTeen. National Service Delivery Framework for Adolescents and Young Adults with Cancer. Canberra: Cancer Australia and CanTeen; 2008.

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