Overview of psychosocial issues in the adult cancer survivor

INTRODUCTION — 

There are over 18 million cancer survivors in the United States [1]. Although the term "cancer survivor" refers to anyone alive after a cancer diagnosis, this topic addresses psychosocial concerns in cancer survivors who have completed treatment and are disease free. Psychosocial concerns are often primary issues for cancer survivors after treatment completion [2-5]. Studies with longitudinal follow-up have also improved our understanding of how to meet long-term needs among cancer survivors.

This topic will provide an overview of psychosocial issues in the adult cancer survivor. Other aspects of cancer survivorship care are discussed separately.

●(See "Overview of cancer survivorship care for primary care and oncology providers".)

●(See "Assuring quality of care for cancer survivors: The survivorship care plan".)

●(See "Overview of cancer survivorship in adolescents and young adults".)

●(See "The roles of diet, physical activity, and body weight in cancer survivors".)

●(See "Cognitive function after cancer and cancer treatment".)

●(See "Overview of sexual dysfunction in female cancer survivors".)

●(See "Overview of sexual dysfunction in male cancer survivors".)

●(See "Cancer survivors: Overview of fertility and pregnancy outcomes".)

IMPORTANCE OF ADDRESSING PSYCHOSOCIAL CONCERNS — 

Cancer survivors report higher rates of psychosocial concerns and general mental health needs compared with those without a history of cancer [6-11]. Therefore, it is essential to address these psychosocial concerns in cancer survivors to maintain quality of life, prevent the impairment of critical health behaviors, and reduce morbidity and premature mortality [12-14].

Cancer survivors with clinical depression or any mental health diagnosis have an increased risk of all-cause mortality [15,16]. Unfortunately, data suggest that we are not meeting these needs of cancer survivors as well as we should. For example, in a survey of hematopoietic cell transplantation (HCT) survivors, among those who reported feeling distressed, 50 percent said they had not received any treatment for their emotional needs [17]. Both older (over 75 years) and young adult cancer survivors report difficulties in obtaining help for their psychosocial needs, with 25 percent reporting anxiety and 42 percent reporting difficulties with their relationships [18,19]. Some psychological concerns, such as fear of cancer recurrence, are specific to cancer survivors only [4,6]. (See "Survival, quality of life, and late complications after hematopoietic cell transplantation in adults".)

PSYCHOSOCIAL ISSUES — 

Common psychosocial issues among cancer survivors include depression, anxiety, posttraumatic stress (PTS) symptoms, fear of cancer recurrence, and cancer-related distress. Resilience and posttraumatic growth [PTG] are positive impacts that can moderate psychosocial concerns. Social factors, social functioning, and physical conditions (such as sexual dysfunction and fertility) can also impact these issues in cancer survivors.

Depression

Symptoms — Depression is broadly detrimental to physical health and quality of life and is associated with a twofold increased risk for all-cause mortality in cancer survivors [15,20]. Depression can also be a response to chronic illness and physical, social, and environmental stressors that reinforce feelings of futility or lack of agency, such as "nothing will ever get better" and "nothing I do will make a difference."

Depressive symptoms include emotional, cognitive, and physical or behavioral symptoms. Physical or behavioral symptoms are often confounded in survivors with late effects of treatment such as fatigue, concentration difficulty, and sleep disruptions. Therefore, before diagnosing depression, it is essential to confirm that symptoms include feeling depressed, hopeless, or a loss of interest in previously enjoyable experiences. (See "Approach to the adult patient with suspected depression".)

There are different trajectories of depression symptoms over time among cancer survivors. Similar trajectories have also been demonstrated for anxiety and cancer-related distress [21-23]. Trajectory groups include: one group with consistently high depressive symptoms; a second group that starts with high symptoms but then decreases over time; and a third group with consistently low depressive symptoms [24]. Studies also suggest a fourth group with depressive symptoms that worsen over longer periods of time (even five to ten years after treatment), indicating that depression rates can again increase among long-term cancer survivors [25]. As an example, in one cohort study of colorectal cancer survivors, the rate of diagnosis of a new mental health disorder between cancer diagnosis and two years was 25 percent, decreased to 13 percent during years two to five, and then increased to 27 percent at five years or more [16]. As with other cohorts defining new-onset diagnoses, depressive symptoms were the most common and followed a similar diagnostic trend (8 percent for zero to two years, 5 percent for greater than two to five years, and 9 percent for greater than five years from cancer diagnosis) [6].

Prevalence — Depression is the most common new mental health diagnosis in cancer survivors. In the years following cancer treatment, as many as 22 percent of cancer survivors are diagnosed with new onset depression [16]. Paradoxically, data indicate that the prevalence of self-reported symptoms of clinical depression is similar between cancer survivors (approximately 12 to 14 percent) and healthy controls (10 percent) [9,26-28].

The presence of depressive symptoms can be influenced by culture and stressors. As an example, in a study of Latin American breast cancer survivors, 53 percent had elevated depressive symptoms [29]. Time may moderate depressive symptoms for most survivors, with those in the first two years after diagnosis being most vulnerable when compared with those 2 to 10 years or 10 years or longer after diagnosis [6,9]. However, some cancer survivors may have late onset depression five years or more after treatment completion [25]. (See "Adult patients with cancer: Initial treatment of unipolar depression".)

Risk factors — Multiple factors are associated with an increased incidence of depression. These include:

●Earlier time from a cancer diagnosis (particularly within the first two years following the end of treatment) [30,31]

●A prior history of depression or a prior history of mental health treatment [26,27]

●A sedentary lifestyle [26,27,32]

●Active smoking history [26,27]

●Avoidance as a coping strategy [27,33]

●Lower education level [34]

●For females, a poorer body image [35], especially if diagnosed at a younger age (ie, <45 years) [36]

●Greater perceived financial stress [37]

●Unemployment [38]

●A history of multiple primary cancers [39]

●Higher number of physical symptoms or lower perceived health status [21,40]

●Lower income [40,41]

●Difficulties in activities of daily living in age over 65 [41]

●Underrepresented racial groups when age over 65 [41]

●Two or more comorbidities in age over 65 [41,42]

●Lack of receipt of a survivorship care plan [43]

●Rumination and fear of recurrence [44]

●Female and single [40]

●Male testicular cancer survivors who are younger, single or unemployed [45]

●Lesbian, gay, or bisexual cancer survivors [46]

●Lower levels of finding meaning or purpose in life and peace of mind [47]

Anxiety

Symptoms — Cancer survivors with anxiety may present with a complex mixture of physical and psychological symptoms, which can make the diagnosis challenging. Symptoms of anxiety may be expressed as:

●Tension

●Restlessness

●Jitteriness

●Autonomic hyperactivity

●Hypervigilance to symptoms and events

●Insomnia

●Distractibility

●Shortness of breath

●Emotional numbness

●Apprehension

●Worry

Although many of these symptoms might be viewed as normal reactions to the cancer diagnosis and treatment, symptoms that interfere with quality of life or the ability to perform routine activities of daily living require further evaluation and treatment.

Prevalence — Anxiety is reported among approximately 18 to 25 percent of long-term cancer survivors [9,26,27,48,49].

Risk factors — There are many identified risk factors for anxiety among survivors [21,26]. In one study, factors associated with a greater risk of anxiety included [26]:

●Younger age

●Living alone

●A diagnosis of lung cancer or melanoma

Other reported factors associated with anxiety include:

●Avoidance of feelings and thoughts related to cancer [30]

●A previous history of mental health treatment [26]

●Female rather than male cancer survivors [27,50]

●Advanced disease and presence of physical symptoms [51-53]

●Shorter time since diagnosis [31,54]

●Higher number of comorbid conditions [54,55]

●Social isolation [56,57]

●Lesbian, gay, or bisexual cancer survivors [46]

Posttraumatic stress — PTS and posttraumatic stress disorder (PTSD) are underdiagnosed in cancer survivors. Cancer survivors may be underdiagnosed for various reasons. Many well-standardized, clinically relevant measures of PTS and PTSD are infrequently used in mental health assessments of cancer survivors. In addition, many cancer survivors may not have symptoms that reach the level of PTSD, and some may use avoidant coping, which serves to reduce anxiety and evidence of symptoms. Nevertheless, PTS symptoms can still disrupt quality of life and functioning.

Symptoms — All patients with PTSD have some element of the cardinal features, which include experience of a traumatic event (in the case of cancer survivors, related to cancer diagnosis and/or treatment), intrusion symptoms, avoidance symptoms, negative alterations in cognition or mood, and arousal or reactivity changes. However, while PTS symptoms often do not rise to the level of a disorder in most cancer survivors, they may still disrupt quality of life and functioning. (See "Posttraumatic stress disorder in adults: Epidemiology, pathophysiology, clinical features, assessment, and diagnosis".)

Prevalence — Cancer survivors have an increased risk of developing PTSD compared with controls, with a general population rate of 2.4 percent (odds ratio 1.66) [58]. In one meta-analysis, the rate of PTSD among cancer survivors ranged between 5 and 7.3 percent, depending on the measure used [59].

The prevalence of PTS symptoms and PTSD after cancer treatment has not been well characterized across diseases. However, some data are available in specific cancer types:

●In one study of non-Hodgkin lymphoma survivors, 37 percent of patients reported increasing or persisting symptoms of PTS. The prevalence of PTSD was 8 percent [60].

●In a study of long-term breast cancer survivors, PTSD was diagnosed in 12 percent of patients [61]. The prevalence of PTS symptoms was not reported.

●In a study of head and neck cancer survivors who were on average six years post treatment completion, 33 percent reported PTS symptoms and almost 12 percent met criteria for PTSD [62].

●In long-term hematopoietic cell transplant (HCT) survivors, rates of PTSD were low (3 percent) but higher in their family caregivers (7 percent) [63]. In contrast, among survivors only six months after completing HCT, 19 percent were identified as having "clinically significant" PTSD symptoms [64].

Risk factors — The risk factors for PTS symptoms may vary by population. Among adult survivors of childhood cancers in the United States, the presence of PTS symptoms was associated with [65]:

●Less education

●Single status

●Annual income below $20,000

●Unemployment

●Intensity of cancer treatment

Other studies have shown that in adults, an increased risk of PTS is associated with [60,66]:

●Lower economic resources

●Poorer social support

●Less education

●A more recent diagnosis

●More perceived negative impacts of cancer

●Younger age at diagnosis

●Higher anxiety when starting treatment [64]

●Lesbian, gay, or bisexual cancer survivors [46]

Fear of cancer recurrence

Symptoms — The fear of cancer recurrence (FCR) can be a dominant and highly common symptom after cancer, for both patients and family caregivers [4]. FCR is comprised of aspects that are both emotional (worry) and cognitive (perceived risk) [67,68]. While no specific demographics predict the emotional aspects of FCR, race and ethnicity appear to predict the cognitive aspects of FCR. For example, in one study, survivors who were not from a White population perceived a lower likelihood of recurrence and reported less fear compared with White cancer survivors [67].

FCR increases most commonly in the days or weeks prior to regular surveillance visits, when survivors may experience more intrusive thoughts about cancer, irritability, and anxiety [69]. In a longitudinal study of FCR in breast cancer survivors, FCR increased before a mammogram, decreased after receiving negative results, and then increased again one month after the mammogram [70].

While some degree of FCR may be considered normal, symptoms can be sufficiently severe to impede clinical care or quality of life. Examples of this include [71]:

●Avoidance of health professionals and office visits

●Hypervigilance to changes in sensations or the onset of new symptoms

●Increased healthcare utilization, including higher numbers of outpatient and emergency room visits

Of note, it is not clear that FCR is distinct from general tendencies to worry about health after cancer or how it is distinct from or related to PTS symptoms, which also may include intrusive thoughts [67]. (See 'Posttraumatic stress' above.)

Prevalence — FCR is commonly experienced among cancer survivors. In a national survey of cancer survivors, almost 80 percent of respondents reported some level of FCR as a concern [4]. In another study of patients with mixed cancer diagnoses, moderate and high levels of FCR were reported in 67 and 18 percent, respectively [72].

Among specific cancers, FCR has been reported frequently in survivors of early-stage breast cancer (29 percent) [73], head and neck cancer (35 percent) [74], and testicular cancer (33 percent) [75]. FCR can also persist over time; in a longitudinal study over four years of melanoma survivors, the rate of FCR was 39 percent [76].

Risk factors — Studies have identified potential risk factors associated with higher levels of FCR. These include:

●A later cancer stage at diagnosis [77]

●Younger age (ie, age <60 years) [73,78-80]

●Prior diagnosis of recurrence [78]

●Lower educational level [78]

●Lower levels of social support [73,79,80]

●Higher numbers of clinician visits (ie, >5 times in a year) [78]

●Self-identification as a cancer patient [78]

●For females, having children regardless of their ages [81]

●Social constraints limiting self-expression [82]

●Prior mental health issues including other anxiety disorders [83]

Additional risk factors include being diagnosed with skin, colon, or a hematologic cancer; pain; more physical symptoms; depression; and lower levels of social support [72]. Modifiable risk factors (eg, perceived risk of recurrence and seeking health-related reassurance) may be targets for interventions [82]. (See 'Interventions' below.)

Cancer-related distress

Symptoms — Cancer-related distress is more common in cancer survivors than most other mental health diagnoses. Cancer-related distress is often based on the consequences of living with heightened awareness of the uncertainties in life. Cancer-related distress does not always generalize to clinical anxiety, depression, or PTSD in all aspects of life. In clinical practice, cancer-related distress is most often diagnosed as an "adjustment disorder" since symptoms may not meet diagnostic criteria for anxiety, depression, or PTSD.

Cancer-related distress can comprise multiple components, depending on a patient's health complications, environmental and social situation, and internal coping approaches. Cancer-related distress can also fluctuate over time as symptoms or other stresses re-evoke the feelings and fears related to diagnosis and treatment [25].

Symptoms of worry or stress reactions from cancer-related distress most commonly include [84,85]:

●Living with uncertainty and fear of recurrence (see 'Fear of cancer recurrence' above)

●The burden of managing health needs

●Concerns about family and relationships

●Changes in self-perceptions and body image

●Financial burden and stress of managing health insurance

●Demands of communication with healthcare systems and providers

●Increased awareness of vulnerability

●Hypervigilance about new or persistent symptoms

Prevalence — Cancer-related distress has been reported frequently in survivors of breast cancer (36 percent) [86], HCT (43 percent) [20,87], head and neck and liver cancers (35 percent), and lung cancer (43 percent) [88]. Cancer-related distress has also been seen in survivors of colorectal cancer [8,89] and cervical and endometrial cancer [90].

Risk factors — There is no consensus on what common risk factors predispose survivors to cancer-related distress. In part, this is because investigators measure different potential risk factors in varying populations at different points after treatment. Reported associations have been noted between cancer-related distress and the following:

●Persistent physical health problems [91-93]

●Lingering physical signs, which also can negatively impact body image [92,94,95]

●Low levels of kindness and compassion towards oneself, with an increased tendency toward being self-critical [92,93]

●Black cancer survivors [96,97]

●Lesbian, gay, or bisexual cancer survivors [98,99]

●Lower access to support, whether it be educational, financial, or social [100]

●Financial concerns [101]

●Lower income [102]

●Unmarried survivors and married survivors with low support [103]

●Multiple primary cancers [104]

Other psychosocial issues

Resilience and posttraumatic growth — Resilience and PTG are positive impacts that can moderate psychosocial concerns.

●Resilience – Resilience is a major focus within psycho-oncology which can be either a natural skill or taught. Resilience is reflected in the ability to maintain or restore stable mental health and functioning when confronted with major life challenges [105]. It has components that are cognitive, behavioral, social, and biologic [106]. Skills used to build resilience incorporate many of the approaches used in cognitive behavioral treatments, such as reframing, particularly normalizing, mindfulness, improving health behaviors (eg, exercising and nutrition), and using social supports as well as other available resources [107].

●Posttraumatic growth – Positive outcomes of the cancer experience can occur concurrently with negative ones, such as PTG or benefit-finding. This is defined as positive psychological changes that come about as a result of the cancer diagnosis and subsequent treatment journey. It is more likely to be reported by females, older adults, and those with better social support [8,108,109]. Spirituality has also been related to PTG and is more often a positive factor in relieving cancer-related stress, rather than a spiritual crisis that increases stress after cancer [109,110]. While few would say they are "glad" they have cancer, as many as 83 percent can identify benefits that came from their journey such as making positive changes in their lives and having a greater appreciation of life [111]. PTG also can have positive impacts on interpersonal relationships and increased awareness of personal strength or resilience [8,112,113].

Survivor guilt — Survivor guilt is described as the sense of having done something wrong or owing a debt that can never be fully paid as a result of having survived cancer, when others who are equally worthy have died. It is a complex psychological condition that encompasses feelings of blame, grief, and loss. In one survey, more than 60 percent of cancer survivors reported that they had problems with grief or identity [4]. In another study, breast cancer survivors who blamed themselves for their diagnosis also reported more mood disturbance [114].

However, self-blame can also be linked to a greater sense of control. It could also be used as a pathway to take responsibility and motivate positive changes in behavior. For example, head and neck cancer survivors who blamed themselves for their cancer were more likely to make positive health changes in diet, physical activity, and smoking cessation [115]. Similarly, survivors may use their feelings of guilt to motivate positive activities that "give back" and stimulate PTG and resilience, such as participation in advocacy activities [116,117].

Sympton burden — Physical limitations and ongoing symptoms have major consequences for psychosocial outcomes [11,53]. Common long-term symptoms that require evaluation for any survivor with mental health needs include:

●Sleep quality

●Fatigue

●Cognitive dysfunction

●Pain and neuropathy

●Urinary incontinence

●Sexual dysfunction

Other unrelieved symptoms that require assessment depend on the type of cancer and its treatment effects. These symptoms impact mood as well as the ability to work, socialize, and engage in other activities that help maintain a meaningful life. Varying in part by treatment received, cancer survivors can have nine or more concurrent symptoms which clearly impact mental health [118]. The first step in improving mental health in these survivors includes a comprehensive assessment and a plan for addressing these residual symptoms, along with other therapeutic interventions. (See 'Interventions' below.)

Sexual dysfunction — Sexual health is a multidimensional construct that goes beyond intercourse to include intimacy, body image, and sexual response phases of desire, arousal, orgasm, and satisfaction. Sexual dysfunction arising from cancer treatment is one of the most common and distressing issues in cancer survivors. An overview of sexual dysfunction in female and male cancer survivors is discussed separately. (See "Overview of sexual dysfunction in female cancer survivors" and "Overview of sexual dysfunction in male cancer survivors".)

Fertility and reproduction — Some male and female cancer survivors may become infertile after treatment with radiation therapy to the pelvis and/or with higher doses of chemotherapy, particularly with alkylating agents. Nevertheless, they may continue to desire to become parents of their own biologic children. Self-perception of fertility after cancer therapy is also important to assess, not just the physical ability to have a child; such concerns can persist even if there may be no known difficulties with fertility. [119]

The psychosocial impacts of infertility are especially distressing and enduring in those without children. In one study that evaluated long-term survivors of HCT, survivors without children before HCT had a greater-than-threefold-higher risk of elevated concerns about infertility than their counterparts who had children prior to transplant [120].

The assessment of fertility potential in cancer survivors is challenging, particularly within the first two years of completing treatment, because gonadal function may be transiently impaired. Furthermore, even if gonadal function is restored after treatment, survivors may have fewer years of fertility than those not treated for cancer. The presence of functioning gonads does not reliably predict that fertility will continue. Further details are discussed separately. (See "Cancer survivors: Overview of fertility and pregnancy outcomes".)

Various options for reproduction need to be carefully and individually examined for each survivor who wishes to have children [121]. Numerous ways exist for having children, including pregnancy, surrogacy, and adoption. The use of surrogates is possible if eggs or sperm were stored prior to treatment. Adoption is also an option, but a history of cancer could be a significant obstacle for some adult cancer survivors [122].

IMPACT OF SOCIAL ISSUES

Social factors — Social factors such as sexual preference, culture and ethnicity, and socioeconomic status can impact psychological distress in cancer survivors.

Sexual orientation — In the United States Behavior Risk Factor Surveillance Survey cohort, lesbian, gay, and bisexual cancer survivors had two to three times greater odds of elevated depression or poor mental health, whether they were White, Black, or Hispanic patients [98,99]. Within these sexual underrepresented groups, Hispanic females had the highest rates of both depression (59 percent) and poor mental health (40 percent).

Culture and ethnicity — Cultural differences and ethnicity can impact psychological distress in cancer survivors. A systematic review of Asian-American breast cancer survivors found higher rates of depression and intrusive thoughts, particularly in those who were less acculturated or had more social constraints in expressing their thoughts and feelings [123]. Another study found that 53 percent of Latin American breast cancer survivors had elevated depressive symptoms compared with survivors who were not Latin American [29]. Interestingly, although Black cancer survivors have poorer mental health than White cancer survivors in some studies, these differences are not greater than the differences seen between Black and White patients without cancer, suggesting cancer is not the moderating factor in these differences [124].

Socioeconomic status — Similar to cultural differences, socioeconomic resources can distinguish which cancer survivors seek care, who they seek care from, and their ability to use the care that is available [125]. Financial worry is strongly associated with psychological distress [126,127]. Similarly, lower socioeconomic status is associated with poorer mental health [128].

Social functioning — Cancer and its treatment can have a broad reach into the social functioning of cancer survivors, their caregivers, and their social network (eg, friends, community, places of religious worship). Specific issues that have been evaluated are discussed below.

Support and isolation — Cancer survivors who lack or have limited support at home (whether they live alone or with a person they cannot express their thoughts and feelings with) are at increased risk of mental health disorders. An essential component of all mental health screening is to evaluate available supports and resources for the cancer survivor, both practical and emotional.

Resuming employment — Returning to work is essential to cancer survivors for both psychological and financial health. However, returning to work can be difficult for many cancer survivors as they are recovering from the physical and psychosocial issues related to cancer and its treatment [129]. This may be important because work provides not just financial benefits, but also meaning and social support [130,131]. Data suggest that most survivors are able to return to work; in studies of either breast or prostate cancer survivors, 80 percent were able to resume employment [132,133]. In another study of patients treated with hematopoietic cell transplantation (HCT), 36 and 60 percent returned to full-time work at one and five years, respectively [134]. Despite these findings, it has been suggested that cancer survivors who are female struggle more than those who are male to return to work, and up to 50 percent of female cancer survivors are not likely to return to work [135,136]. (See 'Multidimensional rehabilitation and return-to-work programs' below.)

Numerous risk factors have been identified that reduce the likelihood of returning to work, including:

●Prior diagnosis of breast, gastrointestinal, or a female reproductive cancer [135]

●Older age [137,138]

●Lower income status [137,139]

●Lack of health insurance [131,140]

●Cognitive deficits [141]

●Lower educational attainment [142]

●Physical limitations or residual effects of treatment [133,143]

●Living in a remote area [144]

●Inflexible work environment/employer [138]

Other barriers include psychological issues (depression, anxiety), fatigue, physical limitations (difficulties with range of motion that might make lifting difficult), and menopausal symptoms for females [133,140,142,145-148]. Additional issues are related to the cancer survivor's perception of cancer, such as the belief that cancer treatment would make it difficult to work, chronic side effects of therapy, and perceiving more negative consequences of cancer [149]. Self-employed survivors also have a more difficult time returning to work due to different work tasks or less employment support [150]. Other factors that have been associated with the inability to return to work include lack of work accommodations such as flexible schedules, sick time, temporarily reduced hours, or adjusted responsibilities [138]. Consistent guidelines and programs to transition cancer survivors back to the workforce are needed [133,151]. (See 'Multidimensional rehabilitation and return-to-work programs' below.)

Caregivers — Caregivers also experience cancer-related distress. In one study, caregivers of head and neck cancer survivors had a similar prevalence of posttraumatic stress symptoms (PTS; 33 percent) and posttraumatic stress disorder (PTSD; 25 percent) as the survivors [62]. Female caregivers also report more distress, anxiety, and depression than male caregivers [152]. (See 'Fear of cancer recurrence' above.)

Caregiving can also take a toll on the caregiver's health [153,154], and they can have their own unmet needs [155]. A systematic review found that caregivers who spent longer doing caregiving reported poorer health [154]. A study using the Medical Expenditure Panel Survey found that spouses of cancer survivors were less likely to receive treatment for depression compared with noncancer controls, and rural caregivers were especially at risk [156].

Most data on the cancer experience for caregivers has focused on the first year after cancer diagnosis, and limited data are available on the longitudinal caregiver experience [157-159]. In a study of caregivers for patients receiving HCT 3 to 26 years after treatment completion, younger caregivers with more educational attainment reported lower quality of life [160]. Younger age was also related to more health and financial burden in caregivers of colorectal cancer patients [161].

Successful caregiver interventions may require two core components: how to support their loved ones and how to support themselves [162]. Successful caregivers also needs to feel some support from the patient [163,164]. Communication and reciprocity, where both the cancer survivor and the caregiver share their thoughts and feelings about the cancer experience, has been used as a tool to decrease distress and/or depression in patients and their caregivers [165]. However, in a longitudinal study of 64 couples where one partner was diagnosed with colorectal cancer, there was no association with either patient or partner disclosure and depressive symptoms [162,166].

Children — Children of cancer survivors undergo their own adjustments through the cancer process. There are an estimated 2.85 million minor-aged children with a parent who is a cancer survivor [167]. In a review of the psychosocial issues these children face, adolescent daughters were found to be the most negatively impacted [168], which might be related to feelings of uncertainty and isolation, both of which are common among this age group [169]. One study showed that among adolescent daughters of breast cancer survivors, those exhibiting greater anxiety had mothers who demonstrated greater anxiety in their relationship [170]. Unfortunately, most studies have employed a cross-sectional design, so little is known about how these children fare over the course of their lives.

SCREENING AND ASSESSMENT — 

Although patients who have survived a life-threatening illness often experience distress [171], many patients may not directly express these symptoms to care providers or articulate their experiences. As a result, it is important that clinicians regularly assess cancer survivors for psychological distress and listen for key words that can signal underlying mental health needs. When patients are screened for psychosocial concerns, appropriate resources must be available including educational information, treatment referrals, and acute care for life-threatening conditions such as suicidal ideation. (See "Patients with cancer: Overview of the clinical features and diagnosis of psychiatric disorders", section on 'Suicide' and "Suicidal ideation and behavior in adults".)

General screening — Routine screening of psychological issues in cancer survivors, including clinical depression, anxiety and posttraumatic stress (PTS) symptoms, should be part of the standard follow-up of survivors at least annually [172]. Screening can be performed using patient-reported measures that are administered either online or on paper.

Some tools are designed to measure multiple mental health conditions or overall mental health as a research tool or as clinical screening to identify patients who need further evaluation rather than as a clinical diagnostic tool for determining treatment needs. These measures are empirically designed rather than based on clinical diagnostic criteria, although they have clinical cut-points for identifying patients with a need for further evaluation. Examples of some broad measures of health, including mental health, with strong reliability and validation include the:

●National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS)

●National Cancer Institute Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE )

●Short Form (SF)-36 or SF-12

Screening measures for specific conditions — Multiple well-validated screening tools are also available to evaluate patients for specific psychosocial conditions such as depression, anxiety, posttraumatic stress disorder (PTSD), and cancer-related distress, including fear of disease recurrence [173]. These measures can also be reliably administered to patients online before or during a clinical visit.

These patient-reported measures are widely used, psychometrically tested, diagnostically useful, and validated for clinical care and research in cancer survivors. Most of these are tailored to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) [174]. They also have clinical cut-points for use as screening and treatment tools and have been validated with "gold standard" clinical interviews or patient-reported measures.

●Depression — The Patient Health Questionnaire (PHQ-9) (table 1) (calculator 1) is widely used to screen for depression [175]. The first two questions alone can be reliably used as a screening assessment [176].

●Anxiety — The Generalized Anxiety Disorder (GAD-7) (table 2) (calculator 2) is widely used to screen for generalized anxiety disorder [177,178]. The first two questions alone can be reliably used as a screening assessment [179]. The GAD-7 can also assess for symptoms of panic, social anxiety, and PTSD [180].

●Combined depression and anxiety — The Hospital Anxiety and Depression Scale (HADS) is a screening measure for a combination of anxiety and depression which is more commonly used in Europe and for research purposes [181-183]. This measure consists of questions assessing for depression (HADS-D), anxiety (HADS-A), and both conditions (HADS-T). In limited studies, HADS has demonstrated mixed results for detecting combined symptoms of anxiety and depression among cancer survivors who have completed therapy [182,184,185].

●Posttraumatic stress — Screening measures for PTS include:

•PTSD Checklist for the DSM-5 (PCL-5) (table 3) [186-189].

•Primary Care PTSD Screen for DSM-5 (PC-PTDS-5) (table 4) [190-192]. A cancer-specific version of the PC-PTDS-5 is also available [193].

●Cancer-related distress — Screening measures for cancer-related distress include:

•Distress Thermometer (figure 1). However, the sensitivity and specificity of this measure are lower for cancer patients who have completed treatment compared with those who are actively receiving treatment [194-197].

•The Cancer and Treatment Distress (CTXD) measure has been assessed in a wide range of patient groups, including cancer survivors [84,102,198] In one study of patients treated with hematopoietic cell transplantation (HCT), the sensitivity and specificity of CTXD to detect distress were 91 and 58 percent, respectively [84]. CTXD can also be used to detect symptoms of PTSD [63,199] and assess the efficacy of specific interventions for cancer-related distress [198,200]

Other measures — Numerous measures have been developed to evaluate cancer specific concerns, although they do not yet have the psychometric testing and broad use among cancer survivors to support screening recommendations. Some notable measures include:

●Fear of Cancer Recurrence Inventory – Short Form [201]

●Cancer Worry Scale (CWS) [202-204]

●Mental Adjustment to Cancer (MAC) [205]

●Impact of Cancer (IOC) [206,207]

INTERVENTIONS — 

In cancer survivors, prompt referral for therapy upon recognition of psychosocial needs is essential not only for mental health, but also to reduce health problems and premature death. Depending upon the psychosocial need, treatments can include pharmacologic and/or nonpharmacologic interventions.

Interventions have been developed to assist cancer survivors with psychosocial concerns, many of which can be delivered either in-person or digitally. Interventions that improve in self-efficacy, or the belief that one can act to make a difference in specific goals, can improve psychosocial outcomes [208-211]. Self-efficacy is the core element of psychoeducational, self-management, and cognitive behavioral interventions for the psychosocial needs of cancer survivors.

Further studies are necessary to specifically evaluate effective interventions in cancer survivors. Most interventions have been tested in cancer patients during diagnosis or treatment rather than in cancer survivors who have completed therapy [30]. Additionally, many interventions that were tested with cancer survivors either focus on physical activity or include small numbers of patients, and there are few randomized control trials (RCTs) or replication studies.

Pharmacologic therapy — In general, the pharmacologic management of psychosocial concerns, such as depression, anxiety, insomnia, and fatigue, in cancer survivors is similar to the approach used in patients with cancer. Further details are discussed separately. (See "Cancer-related fatigue: Treatment", section on 'Expert group recommendations for cancer survivors'.)

Psychoeducation and self-management — Many cancer survivors have mild to moderate symptoms for depression, anxiety, posttraumatic stress (PTS), or cognitive dysfunction. Therefore, in most cancer survivors, psychoeducational and "self-management" interventions that are sufficient to manage symptoms include those that normalize experience, provide adaptive coping strategies, relieve worry, and include the opportunity for emotional expression.

Interventions for psychosocial issues may be as simple as providing education about what to expect during recovery and survivorship [212]. More extensive interventions provide not only education, but also tools, skills, and resources to assist the survivor in managing their own health needs. These "self-management" interventions have improved psychosocial outcomes in RCTs of cancer survivors [213,214]. Most have been delivered digitally, and those that improved self-efficacy are generally more effective. Further studies are necessary to assess whether these relatively less-intensive interventions can demonstrate clinically meaningful or sustained effects [215-217].

Cognitive behavioral therapy — Cognitive behavioral therapy (CBT) trains patients to identify and correct maladaptive beliefs. CBT also provides education, coping skills training, goal setting, stress management, and relaxation exercises (eg, mindfulness, relaxation, imagery, hypnosis, meditation, or yoga). (See "Overview of psychotherapies", section on 'Cognitive and behavioral therapies'.)

Data suggest that CBT can improve both functional health outcomes [218] as well as specific psychosocial distress in cancer survivors, including depression and anxiety [219-222], PTS symptoms [222,223], and fear of cancer recurrence [201,224-229].

A systematic review and meta-analysis of 71,205 cancer survivors of varying diagnoses found that CBT was effective in improving functional health outcomes in cancer survivors who had completed therapy (g = 0.585, 95% CI, 0.352-0.819), with the most impact on insomnia and fatigue [218]. The effect of CBT did not differ by sex, age, race, or ethnicity. Although analyses did not separate mental health outcomes from other "functional" outcomes, other findings include the following:

●CBT was effective across all delivery formats, with the highest impact from in-person delivery (g = 0.462, 95% CI 0.290-0.633), followed by technology-assisted interpersonal CBT, (g = 0.333, 95% CI 0.062-0.603) and preprogrammed technology-assisted CBT (g = 0.364, 95% CI, 0.159-0.569).

●Overall treatment effect was similar for CBT compared with mindfulness-based stress reduction or relaxation.

Multidimensional rehabilitation and return-to-work programs — Rehabilitation programs with physical and psychosocial components are particularly well suited to the multidimensional needs of cancer survivors [230-232]. However, data are mixed as to whether that such programs improve psychosocial needs. Further studies with standardized assessments are necessary to accurately evaluate outcomes of rehabilitation and return-to-work programs. In addition, employers may need to assist with interventions that can help cancer survivors return to work [233].

A Cochrane review of RCTs that evaluated rehabilitation programs for cancer survivors, which had high levels of bias, concluded that [234]:

●Rehabilitation programs demonstrate better outcomes for physical rather than emotional endpoints.

●Brief interventional programs (ie, <6 months in duration) focused on one aim at a time were more effective.

●Multidisciplinary interventions are better than usual care at improving cancer survivors' ability to return to work.

In contrast, other studies suggest psychological and medically targeted rehabilitation programs had limited impact on the work capacity or return-to-work rates of cancer survivors [230,235].

Physical activity — Physical activity is safe and improves distress and depression in cancer survivors along with enhancing numerous aspects of physical health, emotional well-being, body image, and overall quality of life. Further details are discussed separately. (See "The roles of diet, physical activity, and body weight in cancer survivors".)

Mind-body interactions — Activities that enhance mind-body interactions such as yoga, qi-gong, and meditation can improve quality of life for cancer survivors with psychosocial distress. As an example, meta-analyses of randomized trials evaluating yoga in cancer survivors demonstrated a positive impact on distress, anxiety, and depression [236,237]. In a separate study with prostate cancer survivors, qi-gong was associated with reductions in the level of fatigue distress [238]. Other mind-body interventions, such as meditation, have also been found to reduce fear of cancer recurrence [239]. (See "Overview of complementary, alternative, and integrative medicine practices in oncology care, and potential risks and harm".)

Digital and telehealth methods for intervention — Phone, videoconference, and internet methods can provide psychosocial support for cancer survivors. These interventions can also provide access to those with distance barriers to care. One challenge is to facilitate cancer survivors' continuing engagement with these digital modalities, particularly for those with lower technology literacy who may also have the greatest need [240,241]

Phone methods have been most widely used and are found to be helpful in delivering psychosocial services [223,242-249]. Methods to meet such survivorship needs include online programs, mobile applications, social media, and texting [250-263]. Web-based interventions have demonstrated some success with self-management approaches and CBT [213-215,218]. Data are still inconclusive for the use of mobile applications to deliver psychosocial care to cancer survivors [263,264].

In a study conducted in female cancer survivors, psychotherapy offered via video conferencing was as effective as an in-person assessment for reducing distress [265]. Using a health coach to enhance digital programs is also feasible. In one randomized trial of a mixed group of cancer survivors, the addition of a health coach to an online website improved posttraumatic growth (PTG) [266].

Further details on the use of telemedicine in patients with cancer during the COVID-19 pandemic are discussed separately. (See "COVID-19: Considerations in patients with cancer", section on 'Incorporation of telehealth'.)

INFORMATION FOR PATIENTS

UpToDate offers two types of patient education materials, "The Basics" and "Beyond the Basics." The Basics patient education pieces are written in plain language, at the 5^th to 6^th grade reading level, and they answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials. Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are written at the 10^th to 12^th grade reading level and are best for patients who want in-depth information and are comfortable with some medical jargon.

Here are the patient education articles that are relevant to this topic. We encourage you to print or e-mail these topics to your patients. (You can also locate patient education articles on a variety of subjects by searching on "patient info" and the keyword(s) of interest.)

●Basics (see "Patient education: When you have depression and another health problem (The Basics)")

SUMMARY AND RECOMMENDATIONS

●Significance – Psychosocial concerns are primary issues for cancer survivors after treatment completion. It is essential to address these psychosocial issues to maintain quality of life and prevent the impairment of critical health behaviors and outcomes. (See 'Introduction' above and 'Importance of addressing psychosocial concerns' above and "Overview of cancer survivorship care for primary care and oncology providers", section on 'Physical and psychosocial well-being'.)

●Common psychosocial issues – Common psychosocial issues include depression, anxiety, posttraumatic stress (PTS) symptoms, fear of cancer recurrence, and cancer-related distress, among others. (See 'Psychosocial issues' above.)

•Depression – Depression is the most common new mental health diagnosis in cancer survivors. Depression is broadly detrimental to quality of life and is associated with a twofold increased risk for all-cause mortality. (See 'Depression' above and "Patients with cancer: Clinical features, assessment, and diagnosis of unipolar depressive disorders".)

•Anxiety – Cancer survivors with anxiety may present with a complex mixture of physical and psychological symptoms, which can make the diagnosis challenging. Anxiety is reported among approximately 18 to 25 percent of long-term cancer survivors. (See 'Anxiety' above and "Patients with cancer: Clinical features, screening, and diagnosis of anxiety disorders".)

•Posttraumatic stress – PTS and posttraumatic stress disorder (PTSD) are underdiagnosed in cancer survivors. Many cancer survivors may not have symptoms that reach the level of PTSD, and some may use avoidant coping, which serves to reduce anxiety and evidence of symptoms. Nevertheless, PTS symptoms can still disrupt quality of life and functioning. (See 'Posttraumatic stress' above.)

•Fear of cancer recurrence – Fear of cancer recurrence (FCR) is comprised of aspects that are both emotional (worry) and cognitive (perceived risk). FCR increases most commonly in the days or weeks prior to regular surveillance visits. While some degree of FCR may be considered normal, symptoms can be sufficiently severe to impede clinical care or quality of life. (See 'Fear of cancer recurrence' above.)

•Cancer-related distress – Cancer-related distress is often based on the consequences of living with heightened awareness of the uncertainties in life. It does not always generalize to clinical anxiety, depression, or PTSD in all aspects of life. (See 'Cancer-related distress' above.)

•Other issues – Resilience and posttraumatic growth (PTG) are positive impacts that can moderate psychosocial concerns. Other psychosocial issues include survivor guilt, symptom burden, sexual dysfunction, and concerns about fertility and reproduction. (See 'Other psychosocial issues' above.)

●Impact of social issues

•Social factors – Social factors such as sexual preference, culture and ethnicity, and socioeconomic status can impact psychological distress in cancer survivors. (See 'Social factors' above.)

•Social functioning – Cancer and its treatment can have a broad reach into the social functioning of cancer survivors, their caregivers and their social network (eg, friends, community, places of religious worship). Cancer survivors who lack or have limited support at home are at increased risk of mental health disorders. Returning to work is essential for both psychological and financial health. Caregivers and children can also experience psychological distress that is similar to or greater than that of the cancer survivor. (See 'Social functioning' above.)

●Screening and assessment

•General screening – Routine screening for psychological issues in cancer survivors, including clinical depression, anxiety, and PTS symptoms, should be carried out as part of the standard follow-up of survivors at least annually. Screening can be performed using patient-reported measures that are administered either online or on paper. (See 'General screening' above.)

•Condition-specific screening measures – Multiple well-validated screening tools are also available to evaluate patients for specific psychosocial conditions such as depression, anxiety, PTSD, and cancer-related distress, including fear of disease recurrence. (See 'Screening measures for specific conditions' above.)

●Interventions – Prompt referral for therapy upon recognition of psychosocial needs is essential not only for mental health, but also to reduce health problems and premature death. Depending upon the psychosocial need, treatments can include pharmacologic and/or nonpharmacologic interventions. (See 'Interventions' above and 'Pharmacologic therapy' above.)

•Examples of nonpharmacologic psychosocial supports include psychoeducation and self-management, cognitive behavioral therapy (CBT), physical activity, mind-body activities, and certain digital and telehealth methods. (See "Cancer-related fatigue: Treatment" and "Insomnia in palliative care".)