Page of

Adolescents and Young Adults with Cancer 

Adolescents and Young Adults with Cancer
Chapter:
Adolescents and Young Adults with Cancer
Source:
Psycho-Oncology (3 ed.)
Author(s):

Bradley J. Zebrack

and Sheila J. Santacroce

DOI:
10.1093/med/9780199363315.003.0089

Introduction

Cancer affects individuals in many aspects of their lives. The experience of diagnosis and treatment can adversely affect the quality of patients’ lives through physical pain, diminished energy, changes to physical appearance, altered relationships, disruptions in everyday activities, confrontation with mortality, and changes in one’s sense of self, the future, and the world.1 Individuals diagnosed with cancer during adolescence and young adulthood (AYAs) face particular challenges due to the startling onset of a life-threatening chronic disease during a time of life when cancer is atypical among their peers. When cancer is diagnosed during adolescence or young adulthood, issues such as premature confrontation with their own mortality, changes in physical appearance, increased dependence on parents, disruptions of social life and school or employment due to treatment, potential loss of reproductive capacity, and health-related concerns about the future are particularly distressing,2 can interfere with adherence to therapy,3 and have long-term repercussions.4

Developmental characteristics distinguish AYAs from younger children and older adults, most notably in the cognitive and psychosocial spheres. Thus, AYA patients merit special attention from psycho-oncologists with regard to medical treatment, psychosocial adaptation, and the achievement of best possible outcomes. In this chapter, we first define the AYA population and then discuss how their unique developmental challenges interact with their cancer experience. In light of a small yet emerging evidence base, we conclude by considering developmentally appropriate approaches to psychosocial care and support for this special population.

Defining the Population

Theories of human development provide a rationale for suggesting age ranges to distinguish varied phases of adolescence and adulthood. The late teenage years to mid-twenties represent a period of “emerging adulthood,”5 with the transition from adolescence to young adulthood occurring by age 20.1 In some instances, age 30 years serves as an upper boundary for “young adult.”1 In the United States, the National Cancer Institute (NCI) uses ages 15–39 years to define the AYA population. Canada generally uses the 15–29-year age range first reported by the NCI’s 2006 Surveillance, Epidemiology and End Results (SEER) program,6 while Australia tends to favor 15–25 years.7 In the United Kingdom, the Teenage Cancer Trust focuses on teenagers and young adults (TYAs) aged 13–24 years, though European members of EUROCARE employ the 15–24-year bracket.7 Currently, however, there exist no definitive biologic or psychological criteria for defining an AYA. Instead, the AYA population in advanced industrialized nations is most often defined by the unique developmental challenges that confront teenagers and young adults as they mature from childhood and adolescence into young adulthood.

Ayas Confront Unique Developmentally Specific Challenges

Cancer patients of all ages typically experience stressors and life disruptions in five domains: (1) interpersonal relationships, (2) dependence–independence, (3) achievement, (4) body-sexual image and integrity, and (5) existential issues.1 While universal in nature, the experience of these stressors and life disruptions will vary depending upon the time of life when cancer occurs.

Interpersonal Relationships

Cancer can heighten AYA patients’ needs for support from friends and peers.2 Yet, diagnosis of a friend’s cancer can be a source of stress for healthy young people who can become anxious and fearful about their own health and who may respond by avoiding interactions with AYA patients. When interactions do occur, the topic of cancer and its implications can be evaded or trivialized, which might disrupt AYA patients’ ability to integrate the cancer experience. Social and psychological isolation and alienation are commonly reported among AYA patients as they miss out on sharing life experiences that are common among peers as well as those unique to the cancer experience.8 Self-view and identity are shaped in part by a person’s social roles, such as student, athlete, employee, and friend, so when these roles are lost, disrupted, or delayed due to cancer, distancing and alienation between AYA patients and peers can occur.9 In adolescents with cancer, those with low levels of social support and high levels of uncertainty have been shown to have the highest levels of psychological distress.10 Cancer deprives AYAs from regular participation in activities that are normal for the age, including experimentation with substances and other risky behaviors, and may lead to overindulgence in attempts to convince themselves and others that they are “normal” or unchanged from their former selves despite their cancer diagnosis.

AYA patients can also be challenged in their sexual and intimate relationships.11,12 Some AYAs adjust to cancer-related changes in sexual desire and function without distress. Others feel increased distress, including symptoms of depression or anxiety, which in turn can further influence sexual desire and function. The AYA patient may be confused or embarrassed about sexual problems, may be unaware that they could be connected with cancer and cancer therapy, and may hesitate to raise these concerns with health professionals. A main worry for AYA patients is deciding if, when, and how to disclose their medical history in social situations, struggling with what and how much to say, particularly to those with whom long-term intimacy may be desired.12,13 Faced with varied potential reactions, AYAs can lack confidence because they doubt acceptance. Severe loss of opportunities for peer interaction can be experienced as major deprivations that multiply other illness stressors.

Dependence–Independence

Seriously ill people can become dependent, at least temporarily, on family members, friends, or acquaintances. For AYAs, this can involve recommencing dependency on parents and can be experienced as a disturbing regression to previous developmental stages. While AYA patients identify parents as their primary source of support, the relationship is tenuous. AYA and parent coping styles may be different, and may even clash. AYAs often struggle in their attempts to balance desire for independence with forced dependence on parents, wanting to “go it alone” but also recognizing the need for parents to accompany them to doctor’s appointments, to help make decisions about treatment, to assist with financial aspects of the cancer experience, or even to provide physically intimate care involving exposure of their bodies to their parents.

Achievement

Developmental milestones for AYAs include career planning, maturing perspective on parents, and establishing intimate and committed relationships. AYAs can face disruptions in realizing achievement in these areas due to numerous heathcare visits, hospitalizations, treatment toxicities, or sporadic school attendance. These disruptions lead to social functioning disruption and sometimes limit educational attainment, employment opportunities, and career options. When employed, AYAs often work at jobs that do not offer benefits, including health insurance, or they may elect to opt out of benefits because of competing expenses or a sense of invulnerability. Even when they have health insurance, AYA patients can lose coverage when they miss work for extended periods of time, leave school, or age out of eligibility for insurance under parental employment benefit plans. To be eligible for supplemental security income (SSI), social security disability insurance (SSDI), or Medicaid, AYAs must be unemployed, or if working, earn below a federally defined threshold for “substantial gainful employment.” Meeting eligibility requirements can require AYAs to return to work prematurely, or remain under- or unemployed. Neither of these means to insurance supports successful developmental achievements for AYAs. Notably, being unemployed is one of the most significant contributors to psychological distress in young adult survivors, as it is in the general population.14,15 Under the 2010 Affordable Care Act, however, AYA can now access health insurance through parental benefits until age 26, and also through Affordable Insurance Exchanges. Individuals may no longer be denied health insurance because of their medical history, and lifetime dollar limits on coverage are not allowed (http://www.whitehouse.gov/healthreform). These healthcare reforms are particularly important for AYA cancer patients and survivors, who potentially have many life years ahead of them but also have ongoing healthcare needs.

Body-Sexual Image and Integrity

Altered appearances, including skin discoloration, surgical scars, medically indicated tattoos, weight changes, hair loss, and alteration in hair quality can cause AYAs to feel different from peers and can reduce self-esteem. Fears that the body will never return to normal, of being unrecognizable to others or to oneself, or mistaken for the opposite sex can lead to shame, isolation, and regressive behaviors.16 Patients can perceive physical changes as threats to their well-being, which can generate anxiety. Self-image and life outlook are experienced as worse among AYA survivors who perceive treatment-related physical changes as moderate to severe versus those who perceive them as mild or not at all limiting.17

A related area of stress and disruption concerns sexual development and identity. During the transition from adolescence to adulthood, individuals realize that they are sexual beings, develop a sexual identity, and conceptualize reproductive capacity. Not surprisingly, cancer and its treatment can affect sexuality regardless of age, race/ethnicity, sexual orientation, gender, or socioeconomic background.18,19 Treatment effects, such as early menopause, osteoporosis, altered cognition, infertility, and fatigue, can affect AYAs’ sexual behaviors, attitudes, and identity.20 Altered body image and self-esteem, changed relationships, and other social challenges can take a toll on AYAs, for whom exploring and developing sexual and intimate relations is normative. Effects on sexuality and intimacy are experienced not only by AYAs during treatment and long-term survivorship, but also by their current and future partners.21 Addressing AYAs’ sexuality and intimacy concerns acknowledges the importance of developing a sense of self as a sexual being, and the formation of safe and healthy intimate relationships. Emergence of a favorable sexual identity depends upon acquiring accurate sexual knowledge, developing constructive interpersonal relationships, and addressing body image concerns.22

The effects of cancer and its treatment on fertility are widely reported. Yet many AYAs do not recall adequate discussion with a health professional before treatment initiation about risk of infertility or available means to decrease the risk,23 possibly because they were more concerned about immediate threats to life and function than about potential late effects many years down the road, and then only if one survived.24 For males, fertility preservation (FP) options include semen cryopreservation. For females, FP methods are more invasive and experimental and can include in vitro fertilization (IVF), ovarian tissue cryopreservation, ovarian transposition, and pharmacological protection. Options for FP vary by acuity, treatment, gender, age, and resources. Health professionals’ assessments of these factors influence the extent to which FP options are presented to patients: less than 50% of age-appropriate males bank sperm, and less than 50% receive suitable education, counseling, and resources.25 Primary barriers to FP include lack of available information and provider difficulty in communicating about fertility, as well as providers’ lack of knowledge about resources or referrals; duration of practice; specialty; lack of training to discuss FP; and lack of knowledge about national guidelines.26 Additional barriers that can interfere with taking advantage of FP include parental refusal, patient inability to produce a viable sample, time constraints related to treatment initiation and/or patient acuity, lack of adequate counseling, anxiety, perception of FP as low priority, gender, and parity.25,27 Fertility concerns are prevalent among AYA patients, can affect their treatment decisions, heighten distress, and even compromise adherence to cancer therapies and other medical recommendations.28,29 All AYA patients must be thoroughly informed about the potential effects of their treatment on fertility as well as the availability of FP options.

Existential Issues

Illness uncertainty (i.e., difficulty cognitively processing illness-related information and events) has consistently been identified as the single greatest source of psychosocial stress for people affected by potentially fatal illnesses like cancer.30 While a diagnosis can ease uncertainty about the etiology of the symptoms that led to seeking care and ultimately the cancer diagnosis, cancer remains widely associated with compromised future prospects, including death. Thus, the diagnosis as well as ongoing exposure to reminders of cancer are potentially traumatic events that can generate intense fear and helplessness,31 and can expand uncertainty into every facet of life, particularly concerning whether there will be a future and what that future will hold.32 Uncertainty can be especially intense for AYAs, who typically understand the serious nature of cancer but often lack illness experience, coping capacities, and peers who are comfortable listening to AYAs try to make sense of information and all that is happening to them. The sense of personal invulnerability and ongoing brain development that typify a substantial portion of the AYA period complicates matters.

Considerations for Psychosocial Care and Support for AYAs

Developmental theory can guide clinical interventions and research for the AYA population. Health professionals should be educated about how development can influence both AYA behavior and intervention design and delivery.33 Also guided by developmental theory, supportive care interventions for AYA should target typical AYA concerns: body image, economic and emotional independence/dependence, social involvement, identity formation, and academic and career achievement.2 Primary intervention goals are to promote constructive coping and quality of life (QOL).34 Interventions that aim to enhance social support and involvement have great potential to enhance QOL. AYA QOL has been shown to be largely a function of social support,29,35 and so improving social support can be a means to mitigate adverse psychosocial outcomes.35 While parents are often identified as a primary source of support, peers who have experienced cancer can also play important roles. Interventions that aim to enhance peer support can offer acceptance and encouragement not usually available to AYAs20 and can promote psychological adjustment for both AYA patients and those with whom they interact.2

Social Support Networks

During early phases of a cancer diagnosis and treatment, friends and family naturally rally around the patient, offering to help around the house, run errands, drive to appointments, or simply hold her hand, tell a joke, and be there. However, during treatment and recovery, AYAs have missed out on many of the life experiences being shared by their non-ill peers—sports and social events, dances, and first jobs.36 Furthermore, support typically wanes over time. Friends stop calling, family members tire, encouraging cards and letters of support stop arriving, and the intensity and frequency of interactions with healthcare providers can dwindle. Associated risks for poor QOL and distress are exacerbated as a result. Indeed, studies indicate that QOL is worse for patients one year following initial diagnosis,37,38 and that treatment completion and transition to monitoring for cancer recurrence and persistent or late onset treatment complications can be fraught with distress.39,40 This transition can be marked by fears of recurrence, fatigue, symptoms of depression and/or anxiety disorders including post-traumatic stress disorder, concerns about dietary intake and physical activity tolerance, and a sense of loss related to decreased support, including that from healthcare providers.41,42,43

Clinical programs that include psychosocial services for AYAs are emerging, but we lack a substantial body of evidence about the efficacy of these services and how to tailor services on an individual basis. For example, peer support programs offer AYAs opportunities to build interpersonal and problem-solving skills, an important developmental task for everyone in this age group. Group interactions and sharing of life experiences create a sense of community among support group members and provide AYAs with opportunities to address mutual concerns, thus reducing feelings of social isolation, depression, and anxiety that frequently plague AYAs.44,45 Participation in oncology camps, adventure programs, retreats, or other social events offers experiences that can promote the successful achievement of AYA developmental tasks. For example, wilderness adventure and advocacy skills training programs can boost self-image, raise confidence, and improve independence.44,45,46,47,48 For AYAs, making friends through peer programs is not inconsequential, as this is a critical developmental task associated with lifelong mental health and well-being. Above all, cancer patients with poor support networks, low self-esteem, and low self-efficacy may have the most to gain from participating in peer support programs, in that they have been reported to experience significantly greater improvements when compared to patients with higher levels of self-esteem and self-efficacy.49 Paradoxically, cancer patients with the least social support, lowest levels of cancer literacy, and most avoidant coping styles have the lowest reported interest in psychosocial care, despite having the most to gain.50

As a computer-, electronics-, and music-savvy generation, AYAs express needs and desires for age-appropriate Internet-based information and opportunities to interact with peers via interactive websites and games.4,51,52 Satisfying these AYA needs via computer games, videos, and music has been demonstrated to be associated with improved coping capabilities,53 resilience,54 and treatment adherence.55,56 Specifically, interventions delivered through these media can encourage young patients and survivors to actively participate in their health-related decisions and care56,57 and also can improve confidence in communications with healthcare providers,58,59 thereby promoting autonomy and independence. The major thrust of these interventions is that they represent activities intended to bolster the support that AYAs receive through existing, as well as new, social networks.

Coping and Behavioral Self-Management

Work by Merluzzi and colleagues60 suggests seven behavioral coping tasks required of cancer patients: (1) maintaining activity and independence, (2) seeking and understanding medical information, (3) managing stress, (4) self-caring for treatment-related side effects, (5) acknowledging the disruptive influence of cancer on one’s life, (6) maintaining emotional well-being, and (7) seeking support. Studies suggest that supportive care resources promote coping capabilities,61,62,63 and some link improved coping to improved QOL.61,64 These results raise the possibility that coping capabilities mediate the effects of formal and informal support resources on QOL outcomes. Promoting formal or informal support systems (in terms of size, perceived usefulness, or both) can enhance coping capabilities, which in turn may improve QOL and/or distress. Another possibility is that coping capabilities moderate the effects of support such that individuals with low coping capabilities derive greater benefits from enhanced support (e.g., someone to drive them to appointments, therapy to boost relationship with a spouse/partner) than do those who initially have more constructive or higher levels of coping. For example, among adolescents who participated in a therapeutic recreation camp, statistically significant improvements in coping capability were observed only in those with low coping capability pre-camp.65 In a study examining the effects of a psycho-educational group intervention, patients who entered the intervention with lower coping capabilities benefited more in terms of QOL than did other participants.49

Historically, empirical investigations of psychosocial adjustment in AYAs have tended to emphasize psychopathological responses (e.g., mood disorders, anxiety, depression, and post-traumatic stress symptoms).15,66,67,68 Life-threatening medical conditions, such as cancer, can negatively affect AYAs’ mental health and potential to achieve developmental tasks.36 Symptoms of post-traumatic stress (PTS) have been reported among young adult survivors of childhood cancer. For example, Hobbie and colleagues have reported that 20.5% of their childhood cancer survivor population met criteria for lifetime post-traumatic stress disorder (PTSD).66 Kwak et al. reported that 39% and 44% of AYAs aged 14–39 years at diagnosis reported moderate to severe levels of PTS at 6 and 12 months post-diagnosis, respectively.69 An emerging body of literature shows that AYAs also report positive (i.e., beneficial) consequences of their cancer experience, such as having greater empathy toward others, increased abilities to cope with life challenges, improved personal relationships, new values and priorities, clarity of future plans and career path, and health competence.70,71,72,73 Barakat and colleagues reported that nearly 85% of AYA survivors of childhood cancer reported at least one positive outcome from their cancer experience.72 Thus, interventions should be aimed at not just preventing, reducing, or eliminating psychiatric symptoms or maladjustment but also allowing for positive perspectives that can be psychologically protective.

Survivorship

Adolescence and emerging adulthood are developmental stages marked by rapid changes in cognitive and emotional growth. Likewise, the first two years following a diagnosis of cancer comprise a wide range of stages of adjustment for AYAs that are not yet well understood. Initially conceived as “seasons of survivorship,”74 a survivorship continuum of care conceptualizes phases of diagnosis, treatment, and survival (regardless of however long one may live). It is at these times when biomedical and psychosocial outcomes and associated needs vary based on myriad physiological, biological, psychological, social, and environmental conditions influencing the host-patient. For example, one could argue that the need for information about cancer and its treatment is most critical during diagnosis and initiation of treatment. In contrast, the fears and distress experienced by many adult patients as they transition from treatment to survival suggest a greater need for information and other forms of support relative to the other phases. In the case of pediatric cancer, long-term survivors have been observed to be significantly more likely to be unemployed or of lower levels of educational attainment when compared to sibling controls, thereby suggesting that vocational rehabilitation or other such social interventions that promote reintegration into school or work may be most needed during the transition from treatment to survivorship.75,76,77

Jacobs and Hobbie78 suggest that long-term follow-up care for adults who have been treated for cancer should include regular assessment and information regarding late effects, emphasizing QOL and health maintenance and promotion. AYA patients could also benefit from a QOL/health maintenance and promotion perspective. An age-appropriate environment that conveys hope and offers age-relevant information that can empower AYA patients, starting at diagnosis, to begin to manage potential late effects (e.g., access FP to manage risk of infertility) may be a means to reduce uncertainty and maximize treatment outcomes.2,79,80 Ill-timed and unsuitably detailed information might increase distress. Therefore, psychosocial assessments of AYAs should include evaluating readiness, cognitive capacities, and preferences regarding level of detail and delivery modalities.20

Conclusion

“The greatest difference in the management of AYAs is the supportive care, particularly psychosocial care, they require. These patients have special needs that are not only unique to their age group but also broader in scope and more intense than those at any other time of life” (p. 19).81 AYA patients face distinct developmental tasks that can be challenged by cancer. Psycho-oncology healthcare professionals must cultivate awareness and sensitivity to the tasks for this age so they can best assist AYA patients to achieve normalcy and healthy maturation throughout the cancer experience.

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