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Overview of cancer survivorship in adolescents and young adults

Overview of cancer survivorship in adolescents and young adults
Authors:
Jean Chiyon Yi, PhD
Karen L Syrjala, PhD
Section Editors:
Patricia A Ganz, MD
Larissa Nekhlyudov, MD, MPH
Deputy Editor:
Sonali Shah, MD
Literature review current through: Jun 2022. | This topic last updated: Jun 29, 2022.

INTRODUCTION — There are over 18 million cancer survivors in the United States [1]. Patients aged 15 to 39 years old at their initial diagnosis constitute the adolescent and young adult (AYA) cancer survivorship population, which includes approximately 89,500 patients diagnosed in 2020 [2], or 2 percent of all invasive cancers diagnosed in the United States [3,4] and less than 10 percent of all cancer survivors [1]. The incidence of cancer in AYAs has increased since 2007. This is attributed to increases in thyroid, kidney, uterine, and colorectal cancers, although the incidence of melanoma has declined [2]. Although the incidence of invasive cancer in AYAs is lower than in younger children or older adults, the psychosocial needs of AYAs often exceed those seen in older adults.

This section reviews the evidence related to psychosocial issues in AYA cancer survivors, including prevalence, risk factors, and interventions that address the psychosocial needs of AYA cancer survivors. For purposes of this discussion, we will address survivorship as it pertains to AYA patients who have completed initial treatment for cancer and who are without evidence of disease.

EPIDEMIOLOGY

Age — Cancer in the adolescent and young adult (AYA) population crosses many diagnoses. The American Cancer Society reported the most common types of cancer occurring between 2012 and 2016, using data derived from the Surveillance, Epidemiology, and End Results (SEER) program, and these vary within the AYA group by three age groups [2,5]:

Ages 15 to 19 – For those between the ages of 15 and 19, the five most common cancers are thyroid, Hodgkin lymphoma, brain and other nervous system, non-Hodgkin lymphoma, and testicular germ cell tumors.

Ages 20 to 29 – For AYAs between the ages of 20 and 29, the five most common cancers are thyroid, testicular germ cell tumors, melanoma of the skin, Hodgkin lymphoma, and breast cancer.

Ages 30 to 39 – For those between the ages of 30 and 39, the five most common cancers are breast, thyroid, melanoma of the skin, colon and rectum, and testicular germ cell tumors.

Cancers among AYAs vary by age. Of cancers diagnosed during ages 15 to 19, 13 percent are Hodgkin lymphoma compared with 9 percent in ages 20 to 29. Other cancers common in adolescents include thyroid, brain and other nervous system, non-Hodgkin lymphoma, testicular germ cell tumors, acute lymphoid leukemia, and sarcomas.

AYAs ages 20 to 39 have a higher proportion of solid tumors, with commonly diagnosed cancers including thyroid, female breast, melanoma, colorectal, testicular germ cell tumors, uterine or cervical, non-Hodgkin lymphoma, kidney, brain and other nervous system, and sarcomas, in addition to Hodgkin lymphoma.

Sex — Rates are similar in male and female adolescents, but 30 percent higher in females compared with males during ages 20 to 29, and females have twice the rates of males in ages 30 to 39. Higher rates in females are attributable to breast cancer and higher rates of melanoma of the skin and thyroid cancer. Although incidence of cancer is higher in female AYAs, mortality in males is slightly higher than in females, attributable to higher rates of brain tumors and sarcomas in males.

Ethnicity — Incidence rates for cancer are highest among non-Hispanic White AYAs (83 per 100,000), followed by non-Hispanic Black AYAs (63 per 100,000). Rates are lowest among Asian or Pacific Islander AYA populations (54 per 100,000). Mortality rates from cancer are highest in non-Hispanic Black AYAs (11 per 100,000).

OVERVIEW — For numerous reasons, both biological and psychosocial, the needs of adolescent and young adult (AYA) cancer survivors appear to be distinct from both older adult and pediatric survivors [6]:

Although cancer mortality in AYA patients has decreased 1 percent annually [2], some data suggest poorer outcomes in AYAs (particularly those with colon or breast cancer). These findings are in part related to tumor biology, including different genomic risks, tumor histopathology, oncogenic pathway deregulation, and chemotherapy sensitivities [7,8]. In addition, there appears to be a tendency for AYA patients to be diagnosed at later stages compared with older patients [9,10].

AYAs with cancer appear to have different side effect profiles to chemotherapy and other cancer-related treatments. For example, younger colon cancer patients reported more nausea and vomiting than older patients [11].

AYAs have been underrepresented in clinical trials, particularly when compared with pediatric populations [12-14] and with all age groups [15].

More research and clinical trials need to be done with AYAs to better understand their cancer biology and to optimize treatment [16]. However, beyond these biologic differences, psychosocial issues are primary concerns for AYA cancer survivors post-treatment and require attention from providers, as reinforced by an Institute of Medicine report and multiple population-based surveys [17-21].

Rationale for a focus on AYA cancer survivors — An emphasis on the issues faced by AYAs with cancer has evolved in large measure because of the developmental issues that may affect AYAs differently than children or older adults such as their emphasis on education attainment, career development, and fertility issues [22-28]. Based on qualitative interviews and a systematic review, AYAs with cancer were found to have needs in three areas: social well-being, information, and health care services [29]. Since AYAs with cancer do not necessarily fit in either pediatric or adult oncology settings, some have advocated for a dedicated AYA oncology service to better target their needs [30].

As AYA cancer survivors age into mature adulthood, they may have deficits in quality of life compared with age-matched controls without a history of cancer. Therefore, it is important to assess and treat symptoms and quality of life deficits before they become chronic, since AYA cancer survivors will spend the majority of their lives with these consequences of diagnosis and treatment [29-31].

Although studies of survivors diagnosed as AYAs are increasing, most studies about the needs of 15- to 39-year-old cancer survivors derive not from those diagnosed as AYAs, but from childhood cancer survivors who have aged into being AYAs. The Childhood Cancer Survivor Study (CCSS) is the largest cohort of childhood and adolescent cancer survivors in North America, with 25 participating institutions and 14,054 survivors diagnosed under the age of 21, a majority of whom have been assessed as AYAs [32].

The CCSS has found that poor mental health is reported by 30 percent of those who are on average over 20 years after a diagnosis of cancer [33]. This is consistent with other research demonstrating poorer emotional well-being in survivors diagnosed as AYAs compared with age-matched controls or other survivor populations [34]. (See 'Psychiatric and psychosocial needs' below.)

Various studies have indicated the importance of understanding the psychosocial needs of AYA cancer survivors and determining strategies to meet those needs. For example, 41 percent of AYA cancer survivors report an unmet need for counseling 12 months after diagnosis [35]. For AYA cancer survivors who were a median of 11 months after diagnosis, two-thirds reported moderate to high levels of unmet informational needs [36]. This is consistent with another study where 62 percent reported needing information during survivorship [37]. (See "Endocrinopathies in cancer survivors and others exposed to cytotoxic therapies during childhood", section on 'Long-term follow-up for survivors of cancer and others treated with cytotoxic therapies during childhood'.)

Differences in AYAs with and without cancer — The psychosocial needs of AYA cancer survivors often exceed those in their counterparts without a history of cancer [38-40]. In general, health-related quality of life and social functioning for AYA cancer survivors is worse than those without a cancer history [41,42].

One study from the United States population-based Behavioral Risk Factor Surveillance System (BRFSS) included 4054 AYA cancer survivors and 345,592 without a history of cancer. Based on these data, AYA cancer survivors reported a higher prevalence of [39]:

Obesity (31 versus 27 percent)

Smoking compared with controls (26 versus 18 percent, respectively)

Chronic health conditions (14 versus 7 percent)

Poorer mental health (20 versus 10 percent)

Poorer physical health (24 versus 10 percent)

AYA cancer survivors also report more fatigue [43] and mental illness [44-46] than other control populations, such as age-matched peers without cancer or older cancer survivors. For example, in one cohort study of 2656 cancer survivors and 112,952 adults without cancer history using the National Survey on Drug Use and Health, cancer survivors ages 18 to 34 were more likely to have mental illness in both lifetime and past-year rates than both older survivors or their noncancer comparisons [44]. The likelihood of any mental illness in the past year for the AYA cancer survivors was 35 percent compared with 23 percent for noncancer comparisons (adjusting for sociodemographics and survey year). Several other studies have demonstrated similar results. As an example, in one cross-sectional analysis, AYAs with cancer reported more moderate (23 versus 16 percent) and severe (8 versus 3 percent) emotional distress than controls [45]. Other studies of Canadian AYAs with cancer and noncancer controls also found that AYA cancer survivors are at elevated risk for mood disorders and have higher rates of outpatient mental health visits [46,47]. (See 'Psychiatric and psychosocial needs' below.)

High-risk behaviors are higher in AYA cancer survivors than their age-matched comparisons. A study using the National Longitudinal Study of Adolescent Health found higher rates of daily smoking in AYA cancer survivors (34 percent) versus healthy matched controls (20 percent) [48], as have other studies [49,50]. Ethnicity could be a protective factor as Hispanic AYA cancer survivors were less likely to be lifetime smokers than non-Hispanic White AYA cancer survivors [51]. AYA cancer survivors are also more likely than those without a cancer history to binge drink alcohol [52] and are less likely to be physically active [53].

These challenging health outcomes in the AYA population are likely related to multiple factors:

Financial barriers to care – AYA cancer survivors also report more financial problems compared with age-matched peers or older survivors, indicating financial toxicity is a concern [54-56]. These include lack of health insurance [57,58]; although this has improved somewhat with the provision in the Affordable Care Act that allows children through the age of 26 to be on their parents' health insurance, it does not cover the full age spectrum of AYAs. There is some indication that those in the older age groups (25 to 39 years old) are more likely to be without insurance than younger AYAs [59,60].

Access to health insurance could be an important factor, as those without health insurance report worse psychosocial outcomes [61]. Hispanic AYA cancer survivors are less likely to be insured than White AYA cancer survivors [51]. In addition to lack of health insurance, AYAs have fewer financial resources than older adults, along with shorter work histories, lower incomes [62], and more health-related debt.

Knowledge barriers – AYA cancer survivors appear to lack adequate information about cancer treatments they received, cancer recurrence or second cancer risks, and the other survivorship follow-up they need based on the type of cancer and treatments they had [63,64]. This may be made even more complicated by a lack of perception that they need subsequent health care, as well as avoidance behaviors with regard to subsequent care.

Competing priorities – For AYA cancer survivors, competing priorities may be a barrier to better care. These include the need to balance non-health priorities such as career, home and family, and limited practical and economic resources [39,65,66].

Psychosocial outcomes – The challenges, transitions, choices, and developmental milestones related to education, employment, identity, relationships, and family concerns of AYA cancer survivors differ from older adults who may be retired or have had the children that they wish to have. In qualitative interviews with adolescent cancer survivors, they report feeling isolated and different from their peers who have not had cancer and consequently can withdraw from their peers [67], while other barriers to care may block their seeking of resources to meet their psychosocial needs.

Physical scars and body changes – Some AYA cancer survivors may be challenged by physical deformities, particularly during this phase of life when body image is critical to their sense of self. In interviews with AYA cancer survivors, they reported thinning hair, scars, and stretch marks as negatively affecting their body image [68]. In addition, data from the CCSS show that 67 percent of AYAs who survived a childhood cancer reported some kind of disfigurement [33]. Female AYA cancer survivors are more at risk for negative body image than males [69]. Infertility is another potential problem AYAs with cancer may face due to body changes and is discussed in more detail below. (See 'Fertility' below.)

Learning and communication styles – AYA cancer survivors have distinctive types of learning and communication needs that differ from those of younger or older survivors of cancer [70,71]. These may influence their responsiveness to health education and recommended health care. For example, online groups may be a way to disseminate information to this group of survivors [19]. Group formats may be an important way to educate AYA cancer survivors as they want to meet other survivors like themselves [72]. Video, text messaging, and use of social media may be other avenues for connecting that resonate with this population; language choice also needs to be age appropriate [19,73-77]. (See 'Social media and other technologies' below.)

PSYCHIATRIC AND PSYCHOSOCIAL NEEDS

Surveillance for mental health disorders and symptoms — For all survivors of adolescent and young adult cancers, we recommend lifelong surveillance for mental health disorders and symptoms at every follow-up visit. Mental disorders and symptoms can arise during and even years after treatment, with rates higher for adolescent and young adult (AYA) survivors than AYA comparison groups without cancer for depression and mood disorders, anxiety, psychological and cancer-related distress, posttraumatic stress disorder (PTSD) and symptoms, and suicidal ideation. This approach is consistent with the evidence-based and consensus guidelines from the International Late Effects of Childhood Cancer Guideline Harmonization Group [78].

Clinicians should obtain a medical history that focuses on mental health symptoms. Suggested questions to the AYA survivor include the following:

Have you been feeling sad, angry, or less interested in things than usual?

Have you been feeling worried, tense, stressed, or overwhelmed?

Have you had trouble coping with thoughts, memories, or reminders of the cancer experience?

Have you had thoughts of harming yourself or ending your life?

Have you considered connecting with a health-care provider to support your mental health?

Endorsing "yes" to any of these questions requires follow-up. For patients who are identified as having mental health problems on an initial surveillance medical history should be referred to a mental health professional (a psychologist, psychiatrist, and/or licensed mental health therapist) for further evaluation.

Standardized patient-reported outcome measures that are also reliable and valid with AYA survivors include the Patient Health Questionnaire (PHQ-9) for depression (table 1 and table 2), the Generalized Anxiety Disorder (GAD-7) for anxiety and panic (table 3), and the Primary Care PTSD Screen for DSM-5 (PC-PTSD-5 (table 4)) [79-84]. For surveillance, the first two items of the PHQ-9 and the GAD-7, with the five yes/no items of the PC-PTSD-5, are reliable to assess the need for further evaluation or referral [85]. An advantage of these measures is that they can be administered online or on paper, prior to the clinic visit, extending the time for follow-up and treatment planning during the visit.

Patients who should be immediately referred to a mental health provider or for local mental health crisis services include those with severe symptoms that could impact safety such as psychosis, severe depression, suicidal ideation, and self-harming behaviors or impulses. (See "Emergency department approach to acute-onset psychosis in children" and "Overview of prevention and treatment for pediatric depression" and "Nonsuicidal self-injury in children and adolescents: General principles of treatment".)

A systematic review of 76 studies on mental health surveillance recommendations in AYA cancer survivors determined an elevated risk of mental health disorders and symptoms, low harm of surveillance, and high benefit from referral to mental health support services in this population [78]. This benefit likely outweighs the costs of additional clinical follow-up, staffing, and mental health resources.

Cancer-related distress — Cancer-related distress includes the consequences of living with heightened awareness of the uncertainties in life and is common in survivors. This distress has components of worry about recurrence; hypervigilance about symptoms; concerns about family and finances [86]; the stress of managing health needs; and changes in self-perceptions, body image, and feelings of vulnerability [87]. It may also include levels of discomfort that do not meet full clinical criteria for anxiety or depressive disorders and often includes somatic symptoms at rates above those in the general population, such as difficulty with concentration, fatigue, and sleep [61,88]. In one study, a majority (65 to 83 percent) of AYA cancer survivors identified future health as their most common concern at one-year follow-up [89].

AYA cancer survivors report greater distress than older cancer survivors [44,56,90]. This distress is associated with adverse outcomes such as increased morbidity and mortality, decreased health-related quality of life, poorer physical and psychological functioning, and lower adherence to provider recommendations [45]. One observational cohort study compared 18- to 34-year-old cancer survivors with age-matched noncancer adults and found a higher incidence of serious psychological distress in the past year (34 versus 18 percent) [44].

Risk factors — Risk factors and other patient characteristics associated with higher levels of distress include,

Younger age at the time of treatment – Those treated under age 30 and particularly as adolescents have a higher incidence of distress compared with those treated at older age [31,38].

Greater burden of late treatment-related effects [31,91].

Lack of a partner [31,91,92].

Negative perceptions of the cancer experience [93].

Greater financial stress or lower income [56,94].

Female sex – Greater distress is often found in female AYA cancer survivors but not confirmed in all studies [56,91].

Other findings associated with higher levels of distress in AYA cancer survivors include unmet informational and supportive care needs [95,96] and recent immigration.

Fear of recurrence — Among the components of cancer-related distress, fear of recurrence (FOR) and increased awareness of uncertainty and vulnerability are the dominating coping challenges for AYA cancer survivors and their families [17]. Other studies confirm that poorer physical and psychological functioning are related to higher levels of FOR [97]. As with any other type of anxiety, FOR can lead to avoidance of health care, interfering with potentially lifesaving surveillance behaviors, or it can lead to hypervigilance to all body or sensation changes, potentially resulting in overtesting and overtreatment. In one cross-sectional study of 292 AYA cancer survivors, FOR was associated with lower quality of life [98].

A systematic review found a wide prevalence of FOR in AYA cancer survivors (ranging from 31 to 85 percent, varying with the measure and population assessed) and most studies often found rates above 60 percent [97,99,100]. Studies comparing FOR in AYA cancer survivors versus older cancer survivors report higher levels in AYAs [99,101-103].

Based on data from various studies, potential risk factors for FOR include [97,100]:

A shorter time since treatment completion

More intensive therapy [97,104]

Disease recurrence

Body image dissatisfaction

Poorer social and psychological functioning [105]

Female sex [104]

AYA mothers with children versus AYAs without children [106]

AYA cancer survivors unable to discuss their cancer experience with their partners [107]

In contrast, some data suggest that FOR can coexist with positive outcomes. For example, in a qualitative study, Hispanic AYA cancer survivors demonstrated optimism and resilience but still reported FOR and need for reassurance by the health care team and their families [108].

Depression — Data consistently demonstrate higher rates of depression in AYA cancer survivors compared with other control populations, such as age-matched patients without cancer or older cancer survivors [109]. The incidence of depression in AYA cancer survivors is estimated to range between 13 and 25 percent [44,110,111], and some can be diagnosed with depression years after their cancer diagnosis [111]. As examples, one study using clinical diagnostic interviews found that 13 percent of AYA cancer survivors met criteria for a diagnosis of depression, whereas another 12 percent had symptoms of depression without meeting full diagnostic criteria [110]. These results are similar to those in a national cohort of 18- to 34-year-old cancer survivors compared with older survivors and age-matched noncancer adults [44]. In this cohort, young adult survivors had a higher incidence of major depressive episode in the past year (15 versus 10 percent) and lifetime incidence (25 versus 17 percent) versus age-matched controls without cancer. Additionally, when compared with older survivors, depression is more frequent in AYA cancer survivors, especially those diagnosed with breast cancer [112,113], non-Hodgkin lymphoma [114], and ovarian cancer [115].

Other risk factors for depression in AYAs with cancer include:

Female sex [88,111,116]

Older age at diagnosis [103]

Head and neck disfigurement [117]

Reproductive concerns [118]

Hispanic ethnicity [119]

Suicidal ideation — Suicidal ideation as a symptom of depression has been measured in AYA cancer survivors of childhood cancer and found to be more likely than in their siblings [120,121]. Data suggest that suicidal thoughts in the past year are more common in AYA cancer survivors when they are compared with their noncancer peers (10 percent in survivors versus 7 percent in peers) and is twice the rate seen in older cancer survivors [44]. Poorer physical health has been found to be a predictor of suicidal ideation [121,122]. In observational cohort studies, AYA cancer survivors are also more likely to commit suicide than their noncancer peers [123,124].

Anxiety — When evaluated, clinical symptoms of anxiety impact approximately 15 to 20 percent of AYA cancer survivors and can persist years beyond treatment completion [46,83,125]. One study reported anxiety-related diagnoses in 17 percent of 250 AYA cancer survivors using clinical diagnostic interviews [126], which is higher than the rates of anxiety seen in other studies of age-matched noncancer controls (5 percent) [46]. Similarly, a systematic review and meta-analysis found that AYA cancer survivors were at greater risk for anxiety disorders compared with noncancer age-matched comparisons [109]. AYA cancer survivors of a sexual minority have twice the risk of anxiety when compared with heterosexual AYA cancer survivors [127]. (See "Lesbian, gay, bisexual, and other sexual minoritized youth: Epidemiology and health concerns".)

In AYA cancer survivors, anxiety disorders are not often assessed discretely from either composite mental illness or from distress. Risk factors specific to anxiety disorders have also not been well defined in this population. (See 'Cancer-related distress' above.)

Posttraumatic stress disorder — Multiple studies have confirmed a higher risk of PTSD in AYA cancer survivors, with rates ranging from 8 to 29 percent [128-131]. AYA cancer survivors are five times more likely to report PTSD than those without a history of a chronic illness [132]. Compared with siblings who have not been diagnosed with cancer, AYA cancer survivors are at four times the risk for PTSD [133]. Since effective treatments are available for posttraumatic stress symptoms (PTSS) or its extreme of PTSD, it is necessary to identify those who are symptomatic and refer them for appropriate treatment. (See "Posttraumatic stress disorder in adults: Epidemiology, pathophysiology, clinical manifestations, course, assessment, and diagnosis" and "Psychosocial interventions for posttraumatic stress disorder in children and adolescents".)

Posttraumatic stress symptoms — A substantial proportion of AYA cancer survivors have PTSS that does not meet the full clinical criteria for a diagnosis of PTSD [134]. PTSS is an increasingly recognized yet underdiagnosed problem in AYA cancer survivors. In part, this reflects the use of avoidant coping, which serves to reduce anxiety and evidence of symptoms, but may result in also avoiding needed preventive health care that reminds a survivor of cancer. While PTSS may not reach the level of a "disorder," or PTSD, it may still include disruptive symptoms and can lead to significant problems in work and relationships. PTSS can be thought of as subsyndromal relative to PTSD [132,133,135].

One study found that the prevalence of PTSS persisted up to 12 months after diagnosis, with 44 percent having symptoms at 12 months [129]. In that study, predictors of PTSS after 12 months included:

Continuing in active treatment

Having had surgery

Having a cancer type with a 90 to 100 percent survival rate

Being unemployed or not in school

Higher PTSS scores at six months

Other risk factors for PTSS in AYA cancer survivors include [131,136,137]:

Female sex

Poorer family functioning

Presence of late effects of treatment

Unemployment

Lower educational attainment

Receipt of cranial radiation (most often as part of treatment for a hematologic malignancy)

Less social support

Self-image and identity issues

The likelihood of PTSS increases in those with more health problems as well as those who feel more vulnerable to future health problems, who are less satisfied with their health care, and who are more concerned about their cognitive abilities [138]. In a study of AYAs with cancer that examined the relationship between PTSS and posttraumatic growth (characterized as the sense of personal growth or benefit that results from one’s cancer experience), there was some suggestion of a curvilinear relationship between the two variables, such that a little PTSS was helpful in experiencing growth, but that too much PTSS hindered it [139]. There is some indication that a particular symptom of PTSS, re-experiencing, may be cognitively adaptive in that repeated "exposure" to the stressful event could facilitate positive adjustment [139].

COGNITIVE CHANGES — Adolescent and young adult (AYA) cancer survivors are at elevated risk for cognitive deficits after treatment [140-142]. In survivors who receive no cranial radiation treatment, dexamethasone increases the risk for impaired attention (relative risk 2.1) and executive function (relative risk 2.4). Cranial radiation treatment increased risks for both memory and executive function in a dose-dependent relationship and could be seen in academic performance and unemployment rates. (See "Cognitive function after cancer and cancer treatment".)

SEXUAL DYSFUNCTION — Sexual dysfunction is a well-known consequence of many cancer treatments across diagnoses. It is a particular concern of adolescent and young adult (AYA) survivors who may be prematurely postmenopausal as a result of treatment [143]. At one year postdiagnosis, almost half of patients in the AYA HOPE study reported problems with their sexual function [144].

Sexual function has psychological as well as biological, social, and interpersonal components, known as the biopsychosocial model (figure 1). For instance, in young women after breast cancer, sexual dysfunction is associated with receipt of chemotherapy, poor body image, vaginal pain, and fatigue [143]. For survivors who have received alkylating agents or radiotherapy, treatment can lead to genital tissue changes and hormone deficiencies that include not only estrogen or testosterone, but also hypothalamic and pituitary hormones. These changes affect sexual function as well as energy and sexual desire. (See "Overview of sexual dysfunction in female cancer survivors", section on 'Overview of the biopsychosocial model'.)

The types of sexual problems in AYA cancer survivors differ by gender. In a systematic review of sexual function in AYAs with cancer, males have problems with erection, ejaculation, and orgasm whereas females struggle most often with vaginal dryness and lack of sexual desire [145]. In a five-year longitudinal study of AYA breast cancer survivors, different trajectories of sexual function were found with five patterns: asymptomatic, stable and mild, moderate with improvement, moderate with deterioration, and stable severe [146]. Psychosocial symptoms that were associated with severe symptoms included anxiety and poor body image. (See "Overview of sexual dysfunction in male cancer survivors", section on 'Major types of sexual dysfunction in male cancer survivors' and "Overview of sexual dysfunction in female cancer survivors", section on 'Epidemiology'.)

When compared with age-matched controls or older survivors, AYA cancer survivors consistently report poorer sexual function [103,147,148]. At a time of life when many young adults (YAs) feel vulnerable about their body image, cancer can exacerbate this self-consciousness, with as much as 60 percent of AYA cancer survivors reporting a negative body image, which may in turn impact sexual function [149].

The age and sex of the survivor are important factors to consider, even within subgroups of AYA cancer survivors. For example:

Those older than 20 report more problems with sexual function than those between 15 and 20 years [149].

Female AYA cancer survivors report more problems with sexual function than male AYA cancer survivors, although males report their sexual problems as more distressing [150-152].

As younger AYA cancer survivors are coming into contact with the health care system due to their cancer, and because many may also be starting sexual activity, it is an opportune time to reinforce sexual health messages around risky sexual behaviors, contraception, and sexually transmitted infections [153]. Vaccination for the human papillomavirus (HPV) is also important [154], although the available evidence suggests that HPV vaccine initiation rates in young cancer survivors are low (in one study, 22 percent for 13- to 17-year-olds, and 25 percent for 18- to 26-year-olds) [155]. (See "Human papillomavirus vaccination".)

Lack of information about adaptations needed to address problems such as vaginal dryness, lack of desire, and erectile dysfunction can have major impacts on the quality of relationships and need for screening and treatment [156]. Young adult breast cancer survivors (and other AYA cancer survivors) want to be asked about their sexual health during follow-up but may not initiate discussion of these topics [157]. Research with adult survivors indicates that psychosexual interventions are effective in improving sexual function [158-160], but further prospective studies are needed to determine whether these interventions are effective for AYA cancer survivors. The management of sexual dysfunction in adult male and female cancer survivors is discussed separately (See "Overview of sexual dysfunction in female cancer survivors", section on 'Management' and "Overview of sexual dysfunction in male cancer survivors", section on 'Management'.)

PHYSICAL ISSUES — As with adults, cancer treatment can result in long-term issues in adolescent and young adult (AYA) cancer survivors. These issues can also interact with and impact mental health in AYA cancer survivors.

These physical issues include the following:

Fatigue (see "Cancer-related fatigue: Treatment")

Endocrinopathies (see "Endocrinopathies in cancer survivors and others exposed to cytotoxic therapies during childhood")

Bone health issues (see "Bone problems in childhood cancer patients")

Cardiovascular and/or respiratory issues (see "Cancer survivorship: Cardiovascular and respiratory issues")

Neuropathy (see "Prevention and treatment of chemotherapy-induced peripheral neuropathy")

Ototoxicity (table 5) (see "Overview of neurologic complications of platinum-based chemotherapy", section on 'Ototoxicity')

Melanoma and nonmelanoma skin cancers [161] (see "Screening for melanoma in adults and adolescents")

A more general overview of the physical issues in cancer survivors as a population is also covered separately. (See "Overview of cancer survivorship care for primary care and oncology providers".)

FERTILITY — For cancer survivors who have not yet completed their family, infertility is a persistent and major concern that can add long-term stress [156,162-167]. Factors associated with the highest level of fertility concern in these patients include [168]:

Female sex

Younger age

Ethnic minority

Without children at the time of diagnosis

Receipt of chemotherapy

Education about fertility preservation prior to the initiation of any treatment is especially important because a third of survivors surveyed under the age of 30 would have liked a fertility consultation prior to the initiation of treatment [169]. However, a majority of female adolescent and young adult (AYA) cancer survivors (73 percent) reported that they did not receive enough information about fertility [170]. Another study of mixed AYA cancer diagnoses found that only 19 percent recalled any fertility counseling prior to treatment [171]. Furthermore, it is important to reassess these concerns as AYAs transition from the end of active treatment to survivorship, and over time as priorities change [172,173]. AYA cancer survivors may feel awkward and distressed by a need to discuss infertility, premature menopause, and sexual function adaptations such as lubricants with their partners many years before these issues would normally arise. Measures are being developed to assess the fertility concerns of young female survivors [174], and the use of such measures may assist AYA cancer survivors and their health care team in talking about fertility. Despite this, one study of young breast cancer survivors reported that only 34 percent reported having this kind of a discussion [175], although other studies report a more encouraging rate of engagement [168]. Male cancer survivors also need these discussions as they are more likely to use assisted reproduction than noncancer controls [176]. Simple information pamphlets may be an effective way to disseminate fertility information to AYAs with cancer [177]. Addressing barriers to fertility, such as cost, may also be important [178].

Of note, some data show that the parents of AYA cancer survivors share an interest in fertility information [168,179-187]. Therefore, health care teams need to establish standard procedures for discussing these options with AYA cancer survivors and their parents or partners so that referrals can be made that will give these patients a chance to start families once they are ready [188-190]. Provider and institutional barriers need to be addressed in order to fully assist AYA cancer survivors with fertility concerns [191]. Further discussion on fertility preservation is covered separately. (See "Overview of fertility and reproductive hormone preservation prior to gonadotoxic therapy or surgery".)

For AYA cancer survivors who were not aware of fertility options prior to treatment, discussions should focus on what choices remain should they be concerned with or carry a diagnosis of infertility. The Colorado Oncofertility Program aims to educate AYAs with cancer about their fertility preservation options in the context of their cancer treatment, which could be a model for other centers or clinics on how to approach fertility in this population [192]. Having clear guidelines for these discussions will help both survivors and providers have these conversations [193]. A survivorship care plan may help to reduce infertility concerns [194]. (See "Overview of infertility and pregnancy outcome in cancer survivors", section on 'Treatment of infertility' and "Assuring quality of care for cancer survivors: The survivorship care plan".)

RETURN TO WORK — Returning to work can be difficult for many survivors, as they are recovering from the physical and psychosocial issues related to cancer and its treatment [195-199]. Work provides not just financial necessities, but also meaning and social support [200-202].

Approximately one-third of adolescents and young adults (AYA) cancer survivors report a negative impact of cancer on their ability to work [55,140] and are more likely to stop working or to work only part-time [203]. This appears to be even truer among those who are uninsured or who quit working right after diagnosis [203]. Younger cancer survivors are 7 to 8 percent less likely to be employed and more likely to work fewer hours [204]. Survivors of central nervous system tumors are particularly at risk for unemployment [205]. In one study, posttraumatic stress and emotional symptoms were associated with worse work function [206]. A qualitative study of AYA cancer survivors and return to work found that many patients do not feel equipped to manage the legal options that are designed to protect them in the workforce [207].

Even when working, AYA cancer survivors experience a loss in productivity compared with noncancer controls [208]. Particularly for those who receive chemotherapy, cancer treatment and late effects can disrupt work-related physical tasks, mental tasks, and can require extended time off work [55]. Work and home productivity losses are more pronounced when comparing AYA breast cancer survivors with older breast cancer survivors [209]. Not surprising then, AYA cancer survivors are less likely to be in managerial/professional occupations than their siblings who have not had cancer and are likely to have lower income in any job category [202,203].

CAREGIVERS — Research on AYA caregivers is limited compared with the literature on pediatric or general adult caregivers. AYA caregivers also report psychosocial concerns such as posttraumatic stress symptoms (PTSS; 42 percent), and moderate to severe anxiety and depression (28 percent) [137]. (See "Overview of psychosocial issues in the adult cancer survivor", section on 'Caregivers'.)

There may be differences in the caregiving experience depending on the age of the survivor or caregiver, but we do not yet know how to distinguish these experiences. Examples of findings in the literature include that:

AYAs with cancer report feeling closer to their family at the end of treatment and indicate that their family is a major source of emotional support [210,211].

Younger caregivers report more distress than older caregivers [212].

AYAs with cancer struggle with wanting independence but may have health concerns that may make it difficult to be completely independent [213]. Mothers often accompany their AYA cancer survivors to their follow-up visits well past the age that most young adults (YAs) would be independently managing their own health care [214]. Hispanic AYA cancer survivors appear to more commonly welcome the involvement of their mother in subsequent care [215]. This may be important, as there is some indication that Hispanic AYAs with cancer may suffer worse psychosocial outcomes, and inclusion of the family may help prevent negative outcomes [61].

Researchers have begun to measure development with AYA caregivers to assess their needs, and thus far many focus on obtaining information [216]. One measure for mothers of AYA cancer survivors found that four factors emerged [217]:

Social competence

Health perceptions

Satisfaction with health care

Health apprehension

Measures for siblings and grandparents of AYAs with cancer have also been devised to measure their psychosocial needs, but have not yet been widely tested [218,219].

It may be useful to measure the effects of cancer survivorship on AYAs and their caregivers' family functioning. In a study of AYA cancer survivors and their caregivers, each person's depressive symptoms impacted family functioning, whereas only the caregiver's depressive symptoms were related to family cohesion [220]. Parents and AYAs with cancer report similar levels of posttraumatic growth, and for AYA cancer survivors who used more active coping, their parents reported feeling less distress [221].

Little is known about the economic costs to AYA cancer survivors and their caregivers during survivorship. Parents of AYAs with cancer often have to bear a significant economic burden, as they may have to stop working in addition to paying the uninsured costs of cancer care over the course of treatment [222]. This study may underestimate the economic costs, as they used only administrative data and did not ask the families directly about other costs that may be significant.

INTERVENTIONS FOR PSYCHOSOCIAL ISSUES — Interventions have been developed to assist cancer survivors with many of the psychosocial issues they face, but most have been tested during the early diagnostic or treatment phases of care and have not been developed specifically for adolescents and young adults (AYAs) [223]. In a systematic review of psychological interventions for AYA cancer survivors, only two specifically recruited participants diagnosed as young adults (YAs) rather than those diagnosed in childhood [224]. Among AYA cancer survivors, those in late adolescence are the least studied, so clearly, more work is needed to design interventions for those between ages 15 and 19 years and to enroll YAs [225,226].

Social media and other technologies — Social media, web-based and mobile applications, and other technological interventions may be effective in improving outcomes for AYA cancer survivors. Among the few randomized controlled trials focused on AYAs with cancer, a Facebook-based physical activity intervention was effective in increasing activity levels in young adult survivors [227]. A pilot study of a mindfulness-based intervention was effective in reducing distress and improving quality of life [228]. Video delivery of a mindfulness-based intervention was found to be feasible and improved outcomes [229]. The use of technology, such as websites, mobile applications, and texting, may be an important delivery method and has increased knowledge of survivorship in this group [230-233]. Chatbots to deliver positive psychology messages have also been feasible [234].

A fair amount is known about what interventions AYA cancer survivors want. Primary among their interests:

Ability to meet other AYA cancer survivors to be able to share their cancer experience with survivors in their similar age group, which appears to be of a higher priority than even support from family and friends [72,235].

Greater access to information on psychosocial resources [236], which could include retreats [237], workshops [238], cognitive behavioral therapy [239], psychosexual education [240], and group-based cognitive therapy [241]. Improving self-efficacy in self-management seems especially important [242].

Online social networking, including social media and web-based interventions [241,243-251]. For example, a mobile application has also been developed for pain management in adolescents with cancer that could be used as a model for targeting psychosocial outcomes in survivors [252,253], but it needs to be tested in randomized trials to prove efficacy. A feasibility trial used a mobile application in combination with telephone counseling to improve hope in AYA cancer survivors with promising efficacy that needs further evaluation in trials [254]. In addition, a web-based intervention for smoking cessation was developed for AYA cancer survivors, and the quit rates were comparable to those who received print materials [255].

Support groups — Support groups may be helpful for adolescents, but have not been tested in randomized trials [256]. One pilot study evaluated a six-month rehabilitation program that included goal setting, physical activity, psycho-educational methods, and peer support [257]. While not randomized, it demonstrated that participants reported improvements in health-related quality of life. Despite its strengths, its applicability may be limited because the first part of the intervention required a three-week residential rehabilitation program. Online groups may be easier for AYAs with cancer to discuss more sensitive topics such as sexual function compared with face-to-face groups [258]. A qualitative study asked AYAs with cancer about using a mobile application for peer-to-peer support and was viewed favorably [259].

Physical activity-based interventions — Exercise interventions demonstrate the strongest evidence for efficacy in improving outcomes [260-262]. This is supported by a systematic review, though while not specific to AYA, included studies with AYA participants [261]. A review that focused on participants between the ages of 13 and 39 found that exercise interventions had better outcomes than health promotion interventions [224]. A meta-analysis of exercise interventions has a positive effect on the quality of life of AYA cancer patients and survivors, although further data are still necessary [263]. The modes of intervention varied widely from strength training to walking, cycling, yoga, Qigong, or Tai Chi, and the durability of the effects have not been well examined. However, the incorporation of exercise was beneficial in terms of:

Overall quality of life

Body image

Self-esteem

Emotional well-being

Sexuality

Sleep

Social functioning

Anxiety

Fatigue

Pain

Another approach with particular appeal to AYAs with cancer may be an outdoor adventure program, which has demonstrated beneficial effects in improving body image and decreasing depression [264]. However, patients who could benefit from physical activity interventions may not be the ones to enroll in them [265]. Clearly, further testing of activity-based, online methods, and group support interventions for AYA cancer survivors is needed. (See "The roles of diet, physical activity, and body weight in cancer survivors".)

APPROACH TO AYA CANCER SURVIVORS — Screening of adolescent and young adult (AYA) survivors' needs in various psychosocial areas is an essential first step toward meeting those needs. Assessment is needed early after treatment and at least annually, as needs may change over time and with life stages. The process can be started by asking survivors how they are doing and what they are looking forward to.

At this time, it is unclear what the best screening tools are for this population [266-268], so it will require health care providers to ask about psychosocial symptoms. One measure that has been developed for AYAs with cancer has been the Impact of Cancer for Adolescent and Young Adult (IOC-AYA) [269]. Cutoffs used in adult populations may not be appropriate for AYAs, so work needs to be done specific to this group [126]. In addition, there is very little agreement between AYAs and their oncology providers' perceptions about these concerns, so it is imperative to be asking the survivors directly [270]. Communication is related to satisfaction with health care, so it is necessary to make space to discuss topics that are important to individual survivors [271]. However, clinical research is still needed to evaluate the best way to transition AYAs with cancer into survivorship, help them adjust to confident adult health care particularly if they began in pediatrics, and to make sure that their needs are met as they continue their lives [272].

Appropriate referrals to psychosocial services can help AYA cancer survivors cope with the myriad issues that may arise in survivorship, so that the issues do not become entrenched with the passage of time and thus be more difficult to treat. This is especially true in the area of sexual function, where early intervention may be key to recovery [143], and an early referral to a sexual health specialist could be crucial [63,271,273-275]. Finally, the promotion of healthy lifestyles and attention to screening and prevention efforts are essential for these patients. (See "The roles of diet, physical activity, and body weight in cancer survivors" and "Overview of cancer survivorship care for primary care and oncology providers", section on 'Preventive care'.)

Providing and discussing survivorship care plans can provide an opportunity to help AYAs with cancer bring up uncomfortable topics, find resources they need, and feel confident about their ability to manage survivorship [64]. Receiving a care plan is associated with lower unmet needs [276]. These care plans provide clear communication for survivorship in terms of what to potentially expect as these psychosocial issues can be a barrier for participating in adherence for their health [277,278]. In addition, ensuring care is coordinated across specialists and their primary care provider may help ensure compliance with these and other issues. Technology, such as texting, may improve survivorship behaviors by helping with scheduling appointments to monitor late effects and providing reminders for appointments or other planned behaviors [230,279,280]. (See "Assuring quality of care for cancer survivors: The survivorship care plan" and "Overview of cancer survivorship care for primary care and oncology providers", section on 'Coordination of care'.)

SPECIAL CONSIDERATIONS DURING THE COVID-19 PANDEMIC — The COVID-19 pandemic has increased the complexity of cancer care. Important issues include balancing the risk from treatment delay versus harm from COVID-19, minimizing the use of immunosuppressive cancer treatments whenever possible, mitigating the negative impacts of social distancing during care delivery, and appropriately and fairly allocating limited healthcare resources. Additionally, immunocompromised patients are candidates for a modified vaccination schedule (figure 2), other preventive strategies (including pre-exposure prophylaxis), and the early initiation of COVID-directed therapy. These issues and recommendations for cancer care during the COVID-19 pandemic are discussed separately. (See "COVID-19: Considerations in patients with cancer".)

In an online study of AYA cancer survivors during the first few months of the pandemic, more than one-third were in the clinical range for distress, and more than 60 percent reported more anxiety than prior to the pandemic [281]. These and other issues for cancer survivors during the COVID-19 pandemic are discussed separately. (See "COVID-19: Considerations in patients with cancer".)

SUMMARY AND RECOMMENDATIONS

Distinct needs for AYA cancer survivors – Adolescents and young adults (AYAs) comprise less than 10 percent of all cancer survivors. However, their needs are distinct from both older adult and pediatric survivors. (See 'Overview' above.)

Psychosocial needs – The psychosocial needs of AYA cancer survivors often exceed those in their counterparts without a history of cancer. These include higher prevalence of smoking, alcohol binging, obesity, chronic health conditions, and poorer mental and physical health. (See 'Differences in AYAs with and without cancer' above.)

Surveillance for mental health symptoms – For all survivors of AYA cancers, we recommend lifelong surveillance for mental health disorders and associated symptoms at every follow-up visit. Since mental disorders and symptoms and symptoms can arise both during and even years after treatment, we recommend patients be evaluated at every visit for depression and mood disorders, anxiety, psychological and cancer-related distress, posttraumatic stress disorder (PTSD) and symptoms, and suicidal ideation. (See 'Surveillance for mental health disorders and symptoms' above.)

AYA cancer survivors are more likely to report psychological distress compared with their peers without cancer. Fear of disease recurrence is also a dominating coping challenge for these patients and their families. (See 'Cancer-related distress' above and 'Fear of recurrence' above.)

AYA cancer survivors are five times more likely to report PTSD than those without a history of a chronic illness. However, a substantial proportion of this population has posttraumatic stress symptoms (PTSS) and does not meet the clinical criteria for a diagnosis of PTSD. (See 'Posttraumatic stress disorder' above.)

Sexual dysfunction – Sexual dysfunction is a well-known consequence of many cancer treatments across diagnoses. It is a particular concern of AYA cancer survivors who may be prematurely postmenopausal as a result of treatment. (See 'Sexual dysfunction' above.)

Fertility – For cancer survivors who have not yet completed their family, infertility is a persistent and major concern that can add to long-term stress. Education about fertility preservation prior to the initiation of any treatment is especially important. (See 'Fertility' above.)

Return to work – Approximately one-third of long-term AYA cancer survivors report a negative impact of cancer on their ability to work and appear more likely to stop working or to work only part-time. For those that are working, they may be less productive or feel less able to advance their careers. (See 'Return to work' above.)

Interventions – Further work is needed to assess interventions tailored to AYA cancer survivors. Primary interests reported by this group of patients include the ability to meet other AYA cancer survivors, to access more information related to psychosocial resources, and to include more opportunities for social networking, including social media, web-based and mobile applications, and other technological interventions. (See 'Interventions for psychosocial issues' above and 'Approach to AYA cancer survivors' above.)

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Topic 17015 Version 32.0

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