Psychosocial Care of Adolescent and Young Adult Patients

With Cancer and Survivors

Brad Zebrack and Sine ad Isaacson
Brad Zebrack, University of Michigan
School of Social Work, Ann Arbor, MI;
and Sine ad Isaacson, Tulane University
School of Public Health and Tropical
Medicine, New Orleans, LA.
Submitted September 14, 2011;
accepted January 10, 2012; published
online ahead of print at www.jco.org on
March 12, 2012.
Authors disclosures of potential con-
icts of interest and author contribu-
tions are found at the end of this
article.
Corresponding author: Brad Zebrack,
PhD, MSW, MPH, University of Michi-
gan, 1080 S. University Room 2778,
Ann Arbor, MI 48103; e-mail:
zebrack@umich.edu.
2012 by American Society of Clinical
Oncology
0732-183X/12/3011-1221/$20.00
DOI: 10.1200/JCO.2011.39.5467
A B S T R A C T
The delivery of quality care for adolescent and young adult (AYA) patients with cancer and
survivors requires an understanding of the unique qualities of this groupthe shared norms,
attitudes, and beliefs that determine their behavior as well as the unique stresses they face on a
day-to-day basis. All AYAs have typical concerns about being comfortable with who they are and
who they want to become (identity development, including sexual identity), their bodies (body
image), initiating intimate and emotional relationships, separating from parents, and making
independent decisions about future goals such as career, higher education, and/or family
(autonomy). Yet efforts of AYA patients with cancer and survivors to mature are often confounded
by restrictions and limitations placed on themby their disease and treatment. This article promotes
understanding of psychosocial challenges faced by AYAs when diagnosed with and treated for
cancer. It reviews evidence-based psychosocial support interventions for AYAs with cancer and
other life-threatening or chronic diseases, particularly the positive effects of peer support,
technology-based interventions, and skill-based interventions. The article concludes with recom-
mendations for clinical care that are intended to promote the ability of AYAs to cope with cancer.
J Clin Oncol 30:1221-1226. 2012 by American Society of Clinical Oncology
INTRODUCTION
Parent (confronting teenage child): Why did you
do that?
Teenage child (shrugs shoulders): I dunno.
Parent: What do you mean you dont know?
Teenage child: I dont know.
Parents of teenage children, or physicians treat-
ing adolescent andyoung adult (AYA) patients, may
have conversations like this when confronting them
about behaviors (eg, staying out too late, not adher-
ing to prescribed treatment regimens) that the
adults nd ill considered or irresponsible. The re-
sponses of the young person here typify the imma-
turecognitivecapabilitiesthat oftendrivetheactionsof
AYAs. Although rightfully trying to treat AYAs as in-
dependent andresponsible decisionmakers, mature
adults maysometimes haveexpectations of behavior
that exceed the capabilities of AYAs. Goal-oriented
behaviors, organization, planning, andimpulsecon-
trol skills may not be realized before 25 years of age,
when the frontal cortex of the brain typically be-
comes fully developed.
1
Yet AYAs are capable of
caring for themselves and making responsible
choices. A relational approach that acknowledges
their edgling autonomy while positively reinforc-
ing the importance of adhering toprescribedbehav-
iors keeps AYAs closer to adult supports than do
punitive approaches that may result in distancing
themfromauthority gures and role models.
Duringthecritical developmental transitionfrom
childhood to adulthood, AYAs have typical concerns
about being comfortable with who they are and who
theywant tobecome (identitydevelopment, including
sexual identity). They are acutely aware of their bodies
(bodyimage) andactivelyinitiatingintimateandemo-
tional relationships, separatingfromparents, andmak-
ing independent decisions about future goals such as
career, higher education, and/or family (auton-
omy).
2
When diagnosed with cancer, AYAs face ad-
ditional challenges because of the intersection of the
cancer experience with everyday aspects of their
lives. Cancer-related issues such as premature con-
frontation with mortality, changes in physical ap-
pearance, increased dependence on parents,
disruptions of social life and school/employment
because of treatment, and loss of reproductive ca-
pacity become particularly distressing.
3-6
AYA patients and survivors are challenged
to remain active and independent, cope with
treatment-related adverse effects, manage stress,
seek and understand information, manage emo-
tional responses (of self and others), seek social
support, and accept cancer and maintain a posi-
tive attitude.
7
However, AYAs with cancer rarely
have the life experience necessary to know how or
JOURNAL OF CLINICAL ONCOLOGY
R E V I E W A R T I C L E
VOLUME 30 NUMBER 11 APRI L 10 2012
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feel competent to cope effectively with these challenges. Accordingly,
psychosocial interventions that promote coping and self-efcacy (ie,
knowing what to do inthe face of stress or trauma and feeling compe-
tent to perform these actions prociently
8
) may be a key construct
when examining what AYAs need to manage the multiple and varied
ways in which cancer disrupts their lives.
The delivery of quality care for AYA patients with cancer and
survivors requires understanding the unique qualities of this group
the shared norms, attitudes, and beliefs that determine their behavior
as well as the unique stresses they face on a day-to-day basis. This
article serves to enhance understanding of psychosocial challenges
faced by AYAs when diagnosed with and treated for cancer and to
reviewpsychosocial and supportive care interventions that address
these challenges. Finally, recommendations for enhancing care
are offered.
PSYCHOSOCIAL STRESSES AND CHALLENGES OF COPING
WITH CANCER
Cancer-related stresses and attempts to cope with thembegin at diag-
nosis, progress through treatment, and ultimately continue through
transitions to off-treatment survivorship or the end of life. Through-
out this continuum of care, ve domains of stress and coping have
been identied: informational, practical, emotional, interpersonal,
and existential.
9
Information Issues
Information is one of the primary realms of need for AYA pa-
tients with cancer and survivors, particularly with regard to treatment
and late effects, diet and nutrition, mental health counseling, peer
support, fertility preservation, andage-appropriate Internet resources
for information and support.
10-12
Yet communicating information to
AYAs can be challenging in terms of how much and what type of
information each AYA needs, prefers, or can handle emotionally.
Some prefer to be shielded from direct communication about their
cancer; others may desire toassume a more prominent positioninthe
informationowandmanagement of their care.
13
Parents oftenman-
age what and how their children are told about cancer. For some
AYAs, information is distressing; for others, empowering. Asking
AYAs directlyabout howmuchinformationtheywant andtowhomit
should be communicated (to themselves, to parents), and repeating
this process throughout the continuum of care, will involve AYAs in
their own care and thus promote autonomy.
Practical Issues
As AYAs undergo diagnostic procedures and treatments, they
meet innumerable health care professionals and ancillary staff who
will be involved in their cancer care. Diagnostic tests, treatment pro-
tocols, and treatment-related adverse effects often bring discomfort,
pain, nausea, vomiting, fevers and infections, fatigue, changes in ap-
petite, and sleep disturbances. Enduring these effects often requires
major disruptions at school or work and further disrupts the social
lives and usual activities of AYAs. AYAs may experience a renewed
dependence on parents for physical care. End-of-life care presents
special difculty as physical functioning deteriorates, and pain man-
agement and palliation dominate the care regime.
Emerging research suggests that socioeconomic impacts of can-
cer on AYAs are substantial. Young adult survivors of childhood
cancer have been reported to be six times more likely than healthy
siblings to report health-related unemployment and almost twice as
likely to be unemployed but seeking work.
14
Compared with older
adult cancer survivors, AYAs may be at the greatest risk of all when it
comes to unemployment. Research indicates that two thirds of real
lifetime wage growth typically occurs in the rst 10 years of ones
career or involvement in the job market.
15
Missing out on employ-
ment opportunities because of cancer and its treatment threatens the
long-termcareer opportunities, nancial status, and lifetime earnings
of AYAs. Greater risks for unemployment among AYA patients and
survivors also means potentially greater risk for lacking health insur-
ance, which limits access to appropriate long-term follow-up care.
16
Indeed, within a large cohort of young adult cancer survivors, 20%
reported not having had a general physical examination, cancer-
related visit, or visit to a cancer center in the past 2 years.
17
Emotional Issues
Researchstudies inclusive of adults of all ages suggest that rates of
psychologic distress are signicantly greater among AYAs when com-
pared with older adults.
18,19
A life disrupted by cancer results in a
range of emotional needs, withmany AYAs grappling withissues such
as anxiety anddepression.
20
More sothanchildhoodcancer survivors,
individuals diagnosedwithcancer duringadolescence or youngadult-
hood have the cognitive capacity to understand the severity of their
illness and frequently demonstrate persistent distress and anxiety
over death, cancer recurrence, or late effects. Alterations in physi-
cal appearance, including weight changes, hair loss, amputations,
placement of catheters to facilitate treatment administration, sur-
gical scars, and alterations in skin coloration and texture not only
make AYAs feel different from peers but also may represent fright-
ening changes in the body and may adversely affect maturational
processes (eg, formation of self-esteem, identity development).
21,22
Fear that the body will never returnto its original appearance and fear
of not being recognized by others or of being mistaken for an individ-
ual of the opposite sex often lead to shame, social isolation, and
regressive behaviors.
23
Despite these deleterious effects, most AYAs actively seek to im-
prove or adjust totheir current physical, psychologic, andsocial status
and viewthemselves as involved in a process of accepting their cancer
andgettingbacktonormal. AYAs alsocontinuetobeconcernedabout
their physical health, the welfare of their immediate family, feeling cut
off from the outside world, being different from peers, reintegrating
into the school system, and returning to work. They express concerns
about the futureaccess to life and health insurance, jobs and career
options, genetic or hereditary risks of cancer passed on to offspring,
and availability of appropriate survivorship care through a skilled and
attentive medical system.
22,24,25
A special consideration related to self-image is the subject of
sexual identity. During adolescence, individuals begin to realize that
they are sexual beings, examine their sexual identity, and conceptual-
ize their reproductive capacity. It is not surprising, then, that cancer
andits associatedtreatments andadverse effects wouldhave animpact
ontheir burgeoning sexuality andsense of themselves as sexual beings
as well as raise concerns about having sex.
21,26
Interpersonal Issues
Cancer often forces AYAs to move back home with, and become
dependent on, parents and/or family members, usually after periods
Zebrack and Isaacson
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of time living independently. For AYAs who are married or in com-
mitted relationships when diagnosed, they are similarly forced into
dependence on a spouse or partner in a way they never conceived
imaginable. This untimely forced dependence is often a source of
distress. Furthermore, as AYAs with cancer try to deal with or discuss
their illness with their parents, spouses, or partners, they sometimes
discover that they have quite different coping strategies. Parents,
spouses, or partners may want or need to discuss issues with the AYA
patient that he or she does not wish to discuss, or vice versa. Some
young people with cancer desire to protect their family members.
AYAs may try to shield family members fromsome of the things they
themselves worry about, perhaps out of guilt for what their parents,
spouses, or partners are going through, or perhaps just because they
can see howupset family members are.
27,28
AYAs acknowledge family members as being the most important
source of support.
29,30
They also identify friends and other AYAs with
cancer as important supports, in that peers and other AYA cancer
survivors can acknowledge and understand them in ways that people
who have not had cancer cannot.
30,31
From the perspective of friends, a
cancer diagnosis can be a source of emotional distress or discomfort for
healthy young people, who may respond to ill friends by avoiding them.
Isolation and alienation are thus commonly reported among AYA pa-
tients, particularlyas AYAs miss out onlifeexperiences beingsharedby
their healthypeers.
32
SomeAYAs haveproblems connectingwiththeir
peers, whereas others report improvement in relationships but some-
times less satisfaction from them.
33
As a result, these young people
often form new friends, perhaps as a function of their own increased
maturity and need to let go of less mature friends.
The issue of disclosing a cancer history with others, especially an
intimate or potentially intimate partner, is particularly salient to the
AYA population.
26,34
Forming intimate emotional and sexual rela-
tionships is a highly meaningful aspect of human life that is initiated
during adolescence and young adulthood. In the process of creating
suchrelationships, individuals inevitablyreveal themselvespersonal
histories, identities, emotions, thoughts, and bodies. For AYAs, such
disclosures are complicated by the effects of cancer. For example,
disclosure of a history of cancer to friends or others with whom
potentially intimate relationships might be formed may mean risking
alienation and rejection and often further compounds negative per-
ceptions of the bodyandemergingsexuality.
34,35
Cancer-relatedinfer-
tility also challenges intimate relationships, because AYAs fear that a
partner or potential partner may reject thembecause of their inability
toprocreatebiologically.
36
For AYAs withcancer, theprocess of dating
and disclosure becomes new and uncharted territory marked by un-
certainty. Such issues may result in AYAs feeling deprived of fullling
companionship and support and ultimately feeling alone.
Existential and Spiritual Issues
In the face of a life-and-death diagnosis that is rare and totally
unexpected for people their age, AYAs experience a challenge to their
sense of the normal order of things andthe way they have assumedthe
world should work. Their faith in the continuity and predictability of
life is threatened. As a result, AYAs often raise the question: Why has
this happened to me? Answers come in the form of an accident, the
result of parental misbehavior (smoking) or genetic/hereditary mal-
formation, environmental assault (exposure to asbestos, chemical
plant residue, electricity transmission lines), a twist of fate, punish-
ment by God (for real or imagined sins committed by the patient or
parents), or a test by God of personal or spiritual capacity and
faith.
37,38
Although this uncertainty can be a source of distress, it also
can be a catalyst for personal growth, a deepened appreciation for life,
greater awareness of life purpose, development of condence and
resilience, and optimism.
37
PSYCHOSOCIAL INTERVENTIONS AND SUPPORT
Psychosocial interventions exist to reduce distress and promote indi-
viduals ability to cope with stressful conditions. Evidence-based in-
terventions for AYApopulations withcancer or other life-threatening
or chronic diseases are instructive in advancing oncology care and
addressing the unique needs of AYAs. Psychosocial intervention pro-
grams include peer support, technology-based interventions, and
skill-based interventions.
Peer Support
Peer support programs offer AYAs opportunities to build inter-
personal andproblem-solvingskills, animportant developmental task
for all AYAs. Group interactions and sharing of life experiences create
a sense of community among support group members and thus re-
duce feelings of social isolation that frequently plague AYAs.
39-41
Es-
tablishing social ties between young people at different stages in the
cancer continuum allows sharing of coping skills and information,
and sharing fears and concerns provides emotional support.
39,42
Evi-
dence demonstrates signicant improvement in psychologic well-
being
39
as well as in knowledge, condence, coping, self-efcacy, and
effective interpersonal interactions from group participation.
43
Re-
cent researchsuggests that upwardof 50%of AYAs want tomeet other
AYAs with cancer; however, substantial proportions of AYAs report
that their need to meet other AYAs with cancer is not being met.
11,12
Summer camps andadventure programs have provenpopular as
anappealingsettingfor peer interaction. Evidence suggests that camps
and programs promote successful achievement of age-appropriate
developmental tasks. For instance, an 8-day adventure trip for 17
young adult survivors of childhood cancer provided participants with
an opportunity for physical challenges and resulted in reports of im-
provement in self-condence, independence, and social contact.
44
Participants also indicated a preference for confronting the impact of
cancer in their lives through humor, religious beliefs, cognitive re-
framing, and imagination. In general, opportunities for peer involve-
ment provide AYAs with a chance to address areas of concern such as
coping with uncertainty about the future, establishing autonomy
while dealing with forced dependence on family and friends, social
exclusion, body image, sex andsexuality, andinfertility.
39,40
It is nota-
ble that patients with cancer with poor support networks, low self-
esteem, and low self-efcacy may have the most to gain from
participating in peer support programs, in that they have been re-
ported to experience signicantly greater improvement when com-
paredwithpatients withhigher levels of self-esteemandself-efcacy.
45
In an unfortunate paradox, patients with cancer with the least social
support, low levels of cancer literacy, and avoidant coping styles have
the lowest reported interest in psychosocial care despite having the
most to gain.
46
Many AYAs express having little to no interest in attending can-
cer support groups, but manyarewillingtoparticipateinactivities that
will make them feel normal. Age-appropriate and relevant models of
Psychosocial Care of Adolescent and Young Adult Patients With Cancer and Survivors
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conventional support groups are manifesting as social networking
opportunities, inwhichorganizations formedbyAYAs withcancer for
AYAs with cancer offer age-relevant opportunities for AYAs to meet,
be, andbecome whothey want tobe. Examples of support groups that
appeal toAYAsensibilities include the ImTooYoungfor This Annual
OMGStupidCancer Summit, mAsskickers bonres onthe beachand
paintball tournaments, Imerman Angels happy hours and golf tour-
naments, the Ulman Cancer Fund for Young Adults triathlons, First
Descents outdoor adventures (kayaking, rock climbing, surng), and
the Childrens BrainTumor FoundationTexas HoldemPoker Night.
These social networking events involve tens to hundreds of AYA
patients, survivors, and family members at a time.
Technology-Based Interventions
Asatechnical-andelectronics-savvygeneration, AYAsareprimedto
benet fromage-appropriateinformationandsupport deliveredthrough
modernelectronicapplications. Alargemajorityof AYAs demonstratean
expressed need and desire for information, particularly for informa-
tion that is age appropriate,
11,12
and for opportunities to interact with
others via interactive Web sites andgames.
47
Satisfying AYAneeds for
information and support via electronic means (eg, video, telephone,
Internet) has been demonstrated to be associated with increased self-
efcacy
48
and improvements in knowledge and treatment adher-
ence.
49
Furthermore, new media can facilitate AYA participation in
their owncareandmaybecomenewmodes of deliveringcost-effective
and easy-to-disseminate psychosocial support.
49,50
Emergent pilot
studies testing the effects of telephone interventions and music video
creation with AYA patients suggest high levels of participation and
satisfaction as well as improvement in symptom distress, self-efcacy
and coping, and quality of life.
50,51
Social media and Internet-based forms of information delivery
andcommunicationencourage patients toactively participate intheir
own health-related decisions and improve condence in communi-
catingwithhealthcare providers.
52,53
The vast amount of information
available on the Internet, however, and frequent encounters with
conicting information on cancer and treatment often leave AYAs
confused.
53
Furthermore, the ability of AYAs to evaluate information
anddistinguishtruly helpful andrelevant informationfrommisinfor-
mation is limited. AYAs need guidance in how to seek, sift through,
and understand the vast amount of information available to them.
Skill-Based Interventions
Problem-solving interventions and cognitive behavioral thera-
pies (CBTs) are evidence-based approaches that teach new skills (be-
haviors) or induce new ways of thinking and subsequently acting on
ones conditions or circumstances.
54
Theyare efforts topromote ones
ability to better cope with the stresses associated with disease. Few
skill-based interventions have been developed for, and tested empiri-
cally in, the AYApopulation, but the theoretic underpinnings of CBTs
may prove promising for AYA interventions. CBTs are based on the
notion that it is not events, but peoples interpretations of events, that
cause psychologic disturbance or inuence behavior. Subjective per-
ceptions and their inuence on outcomes have been demonstrated as
being better predictors of distress andwell-being thanobjective health
status measures,
55-57
and evidence suggests that the perceptions of
AYAs of howcancer has affectedtheir lives are associatedwithdistress
levels and quality-of-life outcomes.
58,59
An examination of skill-based interventions implemented and
tested in samples of AYAs with other serious or life-threatening dis-
eases may be instructive. Project ACCEPT(Adolescents Coping, Con-
necting, Empowering, and Protecting Together), a skill-based group
intervention for AYAs newly diagnosed with HIV, aimed to enhance
the ability of AYAs to accept and cope with their disease. Participants
reported feeling less socially isolated as a result of connecting with
other group participants.
60
In a skill-based intervention involving
Table 1. Resources for Adolescent and Young AdultSpecic Information and Support
Category Resource
Information National Cancer Institute: http://www.cancer.gov/cancertopics/aya
American Society of Clinical Oncology: http://www.cancer.net/patient/Coping/Age-SpecicInformation/
CancerinYoungAdults
Ulman Cancer Fund for Young Adults: http://www.ulmanfund.org/
Young Survival Coalition (for women with breast cancer): http://www.youngsurvival.org/
LiveStrong: http://www.livestrong.org/
Practical support and day-to-day living with cancer My Lifeline.org Cancer Foundation: http://mylifeline.org/
Fertility-related information and resources Oncofertility Consortium at Northwestern University: http://myoncofertility.org/
Work, employment, and legal support Cancer and Careers: http://www.cancerandcareers.org/en
Cancer Legal Resources: http://www.disabilityrightslegalcenter.org/about/cancerlegalresource.cfm
Contact your states vocational rehabilitation ofce
Financial support services SamFund for Young Adult Survivors of Cancer: http://www.thesamfund.org/
Social Security Disability Ofce: http://www.ssa.gov/disability/
Social networking and peer support Im Too Young for This Cancer Foundation: http://stupidcancer.com/
Imermans Angels (one-on-one cancer support connecting patients, survivors, and caregivers): http://
www.imermanangels.org/
mAsskickers: http://masskickers.org/
Planet Cancer: http://www.planetcancer.org/
CaringBridge: http://www.caringbridge.org/prole/mycaringbridge
Camps, retreats, and adventure programs Camp Mak-a-Dream: http://www.campdream.org/
First Descents: http://rstdescents.org/
Zebrack and Isaacson
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Copyright 2012 American Society of Clinical Oncology. All rights reserved.
parents, health care providers, and teens diagnosed with type 1 diabe-
tes, teens andfamily members were trainedtointegrate diabetes man-
agement intotheir daily routines. The programsucceededinreducing
conict between teens and their parents around treatment adher-
ence.
61
Other structured interventions involving patients and family
members have resulted in observed improvements in disease and
symptom management as well.
62-64
In an intervention to minimize
obesity risk, adolescents experienced improved self-efcacy, personal
goal attainment, competence, and autonomy as a result of participat-
ing in a series of educational lessons involving nutrition science and
motivational activities.
65
Applied to AYAs with cancer, these ndings
suggest that skill-building interventions involving family members, as
well as those that emphasize educational content, mayresult indesired
outcomes for AYAs with cancer such as treatment adherence, disease/
symptom management, and the achievement of developmental tasks
like establishing autonomy and personal responsibility.
RECOMMENDATIONS
The following recommendations are intended to promote the ability
of AYAs tocopewithcancer. Relatedresources arelistedinTable1and
easily found via Internet searches and Facebook. In addition, clinical
practice guidelines for AYAs will be available through the National
Comprehensive Cancer Network as of March 2012.
Information
Consider referral of AYAs to medical and psychosocial spe-
cialists with expertise in treatment and care of cancer in this
age group
66,67
Encourage AYA participation in the diagnostic conference
and subsequent decision making about their illness and
course of treatment
Direct AYAs to age-relevant resources for information re-
garding treatment and late effects, diet and exercise, nancial
support services (eg, health insurance, disabilities benets),
fertility preservation, mental health services, Internet re-
sources, and employment protections
Practical Support
Implement programs that promote the ability of AYAs to keep up
with schoolwork and maintain peer relationships with classmates;
having classmates who welcome and support AYAs return can fa-
cilitate positive adaptationandschool performance
Ensure the availability of educational and vocational support
programs that assist with re-entry into school or the work
force, and ensure nondiscrimination in survivor access to
advanced educational opportunities and employment
Emotional/Social Support
Identify and refer AYAs to reputable peer support programs;
inform them about the existence of age-appropriate camps,
retreats, recreational programs, and social media resources
Consider use of AYA survivors who have the temperament and
talent as peer counselors androle models for younger patients
Encourage AYAs and their families to engage in open discussion of
their reactions to the diagnosis and treatment, their concerns, and
their hopes and dreams for the future; at the same time, such con-
versations must be undertakeninways that are consistent withthe
familys cultural norms and traditions
Develop and implement intervention efforts that promote
positive adaptation and growth as well as prevent or alleviate
distress and psychiatric symptoms
Policy and Institutional Changes
Implement policies inclinics, communities, andhospitals toreduce
stigmaamongpatients, physicians, andthe general public regarding
the use of and need for psychologic or psychiatric services; the im-
pact of this stigma has beenidentiedas a major barrier tointegrat-
ing psychosocial care into routine oncology care
68
; health
professionals may unwittingly reinforce stigma through reluc-
tance to diagnose depression or by conveying unease in discuss-
ing mental health issues, and patients themselves may feel
reluctant to seek assistance with psychologic issues
Advocate for comprehensive health insurance initiatives that
ensure access to care for AYAs; young adults in the United
States between the ages of 18 to 24 years are more likely to be
uninsured than any other age group
69
AUTHORS DISCLOSURES OF POTENTIAL CONFLICTS
OF INTEREST
The author(s) indicated no potential conicts of interest.
AUTHOR CONTRIBUTIONS
Collection and assembly of data: All authors
Data analysis and interpretation: All authors
Manuscript writing: All authors
Final approval of manuscript: All authors
REFERENCES
1. Giedd JN: The teen brain: Insights from neu-
roimaging. J Adolesc Health 42:335-343, 2008
2. Arnett JJ: Emerging adulthood: A theory of
development from the late teens through the twen-
ties. Am Psychol 55:469-480, 2000
3. Shama W, Lucchetta S: Psychosocial issues
of the adolescent cancer patient and the develop-
ment of the teenage outreach program (TOP). J Psy-
chosoc Oncol 25:99-112, 2007
4. Albritton K, Bleyer WA: The management of
cancer in the older adolescent. Eur J Cancer 39:
2584-2599, 2003
5. Eiser C, Kuperberg A: Psychological support
for adolescents and young adults, in Bleyer A, Barr
RD (eds): Cancer in Adolescents and Young
Adults. Berlin, Germany, Springer-Verlag, 2007,
pp 365-374
6. Roberts CS, Turney ME, Knowles AM: Psy-
chosocial issues of adolescents with cancer. Soc
Work Health Care 27:3-18, 1998
7. Merluzzi TV, Martinez Sanchez MA: Assess-
ment of self-efcacy and coping with cancer: Devel-
opment and validation of the Cancer Behavior
Inventory. Health Psychol 16:163-170, 1997
8. Bandura A: Self Efcacy: The Exercise of
Control. New York, NY, W.H. Freeman and Com-
pany, 1997
9. Chesler M, Barbarin O: Childhood Cancer and
the Family. New York, NY, Brunner/Mazel, 1987
10. Rabin C, Simpson N, Morrow K, et al: Behav-
ioral and psychosocial program needs of young adult
cancer survivors. Qual Health Res 21:796-806, 2011
11. Zebrack BJ: Information and service needs for
young adult cancer patients. Support Care Cancer
16:1353-1360, 2008
12. Zebrack B: Information and service needs for
young adult cancer survivors. Support Care Cancer
17:349-357, 2009
13. Young B, Dixon-Woods M, Windridge KC, et al:
Managing communication with young people who have
a potentially life threatening chronic illness: Qualitative
study of patients and parents. BMJ 326:305, 2003
Psychosocial Care of Adolescent and Young Adult Patients With Cancer and Survivors
www.jco.org 2012 by American Society of Clinical Oncology 1225
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14. Kirchhoff AC, Leisenring W, Krull KR, et al:
Unemployment among adult survivors of childhood
cancer: A report from the childhood cancer survivor
study. Med Care 48:1015-1025, 2010
15. Topel RH, Ward MP: Job mobility and the
careers of young men. Q J Econ 107:439-479, 1992
16. White PH: Access to health care: Health insur-
ance considerations for young adults with special
health care needs/disabilities. Pediatrics 110:1328-
1335, 2002
17. Oefnger KC, Mertens AC, Hudson MM, et
al: Health care of young adult survivors of childhood
cancer: A report from the Childhood Cancer Survivor
Study. Ann Fam Med 2:61-70, 2004
18. Stava CJ, Lopez A, Vassilopoulou-Sellin R:
Health proles of younger and older breast cancer
survivors. Cancer 107:1752-1759, 2006
19. Mor V, Allen S, Malin M: The psychosocial
impact of cancer on older versus younger patients
and their families. Cancer 74:2118-2127, 1994
20. Zebrack BJ, Chesler MA, Penn A: Psychoso-
cial support, in Bleyer WA, Barr RD (eds): Cancer in
Adolescents and Young Adults. Berlin, Germany,
Springer-Verlag, 2007, pp 375-386
21. Evan E, Kaufman M, Cook A, et al: Sexual health
and self-esteem in adolescents and young adults with
cancer. Cancer 107:1672-1679, 2006 (suppl 7)
22. Zeltzer L: Cancer in adolescents and young
adults. Cancer 71:3463-3468, 1993
23. Die-Trill M, Stuber ML: Psycholgoical prob-
lems of curative cancer treatment, in Holland J (ed):
Psycho-Oncology. New York, NY, Oxford University
Press, 1998, pp 897-906
24. Evan E, Zeltzer LK: Psychosocial dimensions
of cancer in adolescents and young adults. Cancer
107:1663-1671, 2006
25. Keene N, Hobbie W, Ruccione K: Childhood
Cancer Survivors: A Practical Guide to Your Future
(ed 2). Sebastopol, CA, OReilly Media, 2007
26. Thaler-Demers D: Intimacy issues: Sexuality,
fertility, and relationships. Semin Oncol Nurs 17:
255-262, 2001
27. Zebrack B, Chesler M, Orbuch T, et al: Moth-
ers of survivors of childhood cancer: Their worries
and concerns. J Psychosoc Oncol 20:1-26, 2002
28. Lyman MJ: Supporting one another: The na-
ture of family work when a young adult has cancer.
J Adv Nurs 22:116-125, 1995
29. Kyngas H, Mikkonen R, Nousiainen EM, et al:
Coping with the onset of cancer: Coping strategies
and resources of young people with cancer. Eur J
Cancer Care 10:6-11, 2001
30. Zebrack BJ, Mills J, Weitzman TS: Health and
supportive care needs of young adult cancer patients
and survivors. J Cancer Surviv 1:137-145, 2007
31. Neville K: The relationships among uncer-
tainty, social support, and psychological distress in
adolescents recently diagnosed with cancer. J Pe-
diatr Onc Nurs 15:37-46, 1998
32. Newby LW, Brown RT, Pawletko TM, et al:
Social skills and psychological adjustment of child and
adolescent cancer survivors. Psychooncology 9:113-
126, 2000
33. Jo hannsdo ttir IM, Hjermstad MJ, Moum T, et
al: Social outcomes in young adult survivors of low
incidence childhood cancers. J Cancer Surviv 4:110-
118, 2010
34. Hamilton R, Zebrack B: Dating and disclosure
for cancer survivors, in Mulhall JP (ed): Cancer and
Sexual Health. New York, NY, Humana Press, 2011,
pp 751-762
35. Tindle D, Denver K, Lilley F: Identity, image,
and sexuality in young adults with cancer. Semin
Oncol 36:281-288, 2009
36. Crawshaw MA, Sloper P: Swimming against
the tide: The inuence of fertility matters on the
transition to adulthood or survivorship following ad-
olescent cancer. Eur J Cancer 19:610-620, 2010
37. Parry C: Embracing uncertainty: An explora-
tion of the experiences of childhood cancer survi-
vors. Qual Health Res 13:227-248, 2003
38. Woodgate RL, Degner LF: Nothing is carved
in stone!: Uncertainty in children with cancer and
their families. Eur J Oncol Nurs 6:191-202, 2002
39. Roberts C, Piper L, Denny J, et al: A support
group intervention to facilitate young adults adjust-
ment to cancer. Health Soc Work 22:133-141, 1997
40. Zebrack B, Oefnger K, Hou P, et al: Advocacy
skills training for young adult cancer survivors: The
Young Adult Survivors Conference (YASC) at Camp
Mak-a-Dream. Support Care Cancer 14:779-782, 2006
41. Crom DB: I think you are pretty: I dont know
why everyone cant see that: Reections from a
young adult brain tumor survivor camp. J Clin Oncol
27:3259-3261, 2009
42. Zebrack B, Bleyer A, Albritton K, et al: Assess-
ing the health care needs of adolescent and young
adult (AYA) cancer patients and survivors. Cancer
107:2915-2923, 2006
43. Adler NE, Page A: Cancer Care for the Whole
Patient: Meeting Psychosocial Health Needs. Wash-
ington, DC, National Academies Press, 2008
44. Elad P, Yagil Y, Cohen LH, et al: A jeep trip
with young adult cancer survivors: Lessons to be
learned. Support Care Cancer 11:201-206, 2003
45. Helgeson VS, Lepore SJ, Eton DT: Moderators
of the benets of psychoeducational interventions for
men with prostate cancer. Health Psychol 25:348-354,
2006
46. Merckaert I, Libert Y, Messin S, et al: Cancer
patients desire for psychological support: Prevalence
and implications for screening patients psychological
needs. Psychooncology 19:141-149, 2010
47. Schiffman JD, Csongradi E, Suzuki LK: Inter-
net use among adolescent and young adults (AYA)
with cancer. Pediatr Blood Cancer 51:410-415, 2008
48. Eiser C, Hill JJ, Vance YH: Examining the psy-
chological consequences of surviving childhood can-
cer: Systematic review as a research method in
pediatric psychology. J Pediatr Psychol 25:449-460,
2000
49. Kato P, Cole S, Bradlyn A, et al: A video game
improves behavioral outcomes in adolescents and
young adults with cancer: A randomized trial. Pedi-
atrics 122:305-317, 2008
50. Santacroce SJ, Asmus K, Kadan-Lottick N, et
al: Feasibility and preliminary outcomes from a pilot
study of coping skills training for adolescent-young
adult survivors of childhood cancer and their par-
ents. J Pediatr Oncol Nurs 27:10-20, 2009
51. Burns DS, Robb SL, Haase JE: Exploring the
feasibility of a therapeutic music video intervention
in adolescents and young adults during stem-cell
transplantation. Cancer Nurs 32:E8-E16, 2009
52. Bass SB, Ruzek SB, Gordon TF, et al: Rela-
tionship of internet health information use with
patient behavior and self-efcacy: Experiences of
newly diagnosed cancer patients who contact the
National Cancer Institutes cancer information ser-
vice. J Health Commun 11:219-236, 2006
53. Eysenbach G: The impact of the Internet on
cancer outcomes. CA Cancer J Clin 53:356-371,
2003
54. Boettcher MA, Piacentini J: Cognitive and
behavioral therapies, in Martin A, Volkmar FR (eds):
Lewiss Child and Adolescent Psychiatry: A Compre-
hensive Textbook (ed 4). Philadelphia, PA, Lippincott
Williams and Wilkins, 2007, pp 796-819
55. Fleer J, Sleijfer D, Hoekstra H, et al: Objective
and subjective predictors of cancer-related stress
symptoms in testicular cancer survivors. Patient
Educ Couns 64:142-150, 2006
56. Cordova MJ, Andrykowski MA: Responses to
cancer diagnosis and treatment: Posttraumatic
stress and posttraumatic growth. Semin Clin Neu-
ropsychiatry 8:286-296, 2003
57. Pemberger S, Jagsch R, Frey E, et al: Quality
of life in long-term childhood cancer survivors and
the relation of late effects and subjective well-being.
Support Care Cancer 13:49-56, 2005
58. Zebrack B, Landier W: The perceived impact
of cancer on quality of life for childhood cancer
survivors. Qual Life Res 20:1595-1608, 2011
59. Zebrack BJ, Stuber ML, Meeske KA, et al:
Perceived positive impact of cancer among long-
term survivors of childhood cancer: A report from
the Childhood Cancer Survivor Study. Psychooncol-
ogy [epub ahead of print on March 22, 2011]
60. Hosek SG, Lemos D, Harper GW, et al: Eval-
uating the acceptability and feasibility of Project
ACCEPT: An intervention for youth newly diagnosed
with HIV. AIDS Educ Prev 23:128-144, 2011
61. Husted GR, Thorsteinsson B, Esbensen BP,
et al: Improving glycaemic control and life skills in
adolescents with type 1 diabetes: A randomised,
controlled intervention study using the Guided Self-
Determination-Young method in triads of adoles-
cents, parents and health care providers integrated
into routine paediatric outpatient clinics. BMC Pedi-
atr 11:55, 2011
62. Murphy HR, Wadham C, Rayman G, et al:
Integrating pediatric diabetes education into routine
clinical care: The Families, Adolescents and Chil-
drens Teamwork Study (FACTS). Diabetes Care
29:1177, 2006
63. Grey M, Boland EA, Davidson M, et al: Coping
skills training for youth with diabetes mellitus has
long-lasting effects on metabolic control and quality
of life. J Pediatr 137:107-113, 2000
64. Laffel LM, Vangsness L, Connell A, et al:
Impact of ambulatory, family-focused teamwork in-
tervention on glycemic control in youth with type 1
diabetes. J Pediatr 142:409-416, 2003
65. Contento IR, Koch PA, Lee H, et al: Adoles-
cents demonstrate improvement in obesity risk be-
haviors after completion of choice, control and
change, a curriculum addressing personal agency
and autonomous motivation. J Am Diet Assoc 110:
1830-1839, 2010
66. Ferrari A, Thomas D, Franklin A, et al: Starting
an adolescent and young adult program: Some suc-
cess stories and some obstacles to overcome. J Clin
Oncol 28:4850-4857, 2010
67. Stuber M, Meeske K, Krull K, et al: Prevalence
and predictors of posttraumatic stress disorder in
adult survivors of childhood cancer. Pediatrics 125:
e1124-e1134, 2010
68. Holland JC, Kelly BJ, Weinberger MI: Why
psychosocial care is difcult to integrate into routine
cancer care: Stigma is the elephant in the room.
J Natl Compr Canc Netw 8:362-366, 2010
69. Mills RJ, Bhandari S: Health Insurance Cover-
age in the US: 2002Current Population Reports.
Washington, DC, US Census Bureau, 2003

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