Presented at Cancer Survivorship: Resilience Across the Lifespan, Washington, DC, June 2–4, 2002.
Today, the growing number of survivors from many sites of cancer necessitates that thought be given to ways that ensure follow-up psychosocial care and its integration into ongoing medical surveillance. The establishment of standards of care together with evidence- and consensus-based clinical practice guidelines have provided a highly effective method of enhancing quality care for treatment of cancer. There remain, however, major problems in dissemination and application of these guidelines on the clinical level. The National Comprehensive Cancer Network (NCCN) formed a Panel on Distress Management that developed the first set of consensus-based standards for psychosocial care and clinical practice guidelines specific to cancer illnesses. This article proposes the extension of their concepts to cancer survivors. A model is presented that can assist oncologists and multidisciplinary teams in busy ambulatory settings to more readily identify those survivors who are distressed, whose quality of life is impaired, and who may benefit from further psychological evaluation and treatment.
There is growing awareness that inadequate attention has been given to optimal surveillance for patients who have completed formal cancer treatment and are identified as survivors. Careful attention must be given to the possibility of recurrence, second malignancies, and long-term treatment sequelae, but it is also important to check overall health status, including life style issues. It is not yet clear how these responsibilities should be shared between oncologists and primary care physicians, but helpful first steps may be to identify survivors' needs and to develop clinical practice guidelines to assist in clinical decisions and to facilitate necessary interventions.1–4 As research on survivors expands, standards and guidelines will be increasingly evidence-based.
Despite the surveillance model for follow-up visits, it is clear that survivors' anxiety levels rise in anticipation of a follow-up visit with routine scans and tumor markers. When results are negative, patients return to normal function. Most follow-up visits for survivors are relatively brief, mainly a physical examination and review of their recent scans and tumor markers. Recurrence in asymptomatic survivors is low, and visits tend to be short and routine. During these follow-up visits, oncologists may not have time to ask about psychosocial issues, and survivors may consider their issues too trivial. In the current managed care era, even if distress is present, it may remain unrecognized and, thus, untreated.
It may not be realistic to ask busy oncologists to spend more time with patients to explore how they are coping as survivors. Educating survivors to more aggressively direct the attention of their physicians to psychosocial problems may not be feasible either. Possible pathways may be to involve building on existing standards of psychosocial care and practice guidelines that have been developed by consensus of a multidisciplinary panel of experts (for the purpose of screening psychosocial distress in ambulatory cancer patients) and to modify these standards and guidelines to contain a surveillance model for follow-up of survivors.
Extending Screening for Survivor Distress
Research suggests that as many as 25–45% of cancer patients in ambulatory clinics have significant levels of distress,5–6 and yet less than 10% of patients are likely to be referred for any type of supportive services. Underrecognition and undertreatment of psychological problems has become more problematic as more oncology care (chemotherapy and outpatient surgical procedures) is given in overworked outpatient settings. In addition, patients may be reluctant to ask their oncologists for help with psychosocial concerns because of the stigma attached to all things mental and the fear of being stigmatized not only by cancer but also by being labeled “crazy” as well.
These issues are compounded for survivors whose treatment has been completed and whose follow-up visits focus primarily on signs of recurrence. Psychosocial issues are apt to remain unexamined unless they are observed in a troubled patient or disclosed by patients themselves. This article suggests that the The National Comprehensive Cancer Network (NCCN) outpatient rapid-screen for identification of distress is equally applicable to the presence of distress in survivors. The remainder of this article outlines an approach that will alert clinicians to those survivors who may be at higher risk for distress.
The NCCN Panel for Distress Management proposed using the word “distress” as a less stigmatizing term to refer to psychological, social, and spiritual aspects of patients' well being. The panel defined distress as “an unpleasant emotional experience of a psychological, social and/or spiritual nature which extends on a continuum from normal feelings of vulnerability, sadness and fears to disabling problems such as depression, anxiety, panic, social isolation and spiritual crisis.”1 The term appears to be more acceptable to patients, is less stigmatizing than words like “psychiatric,” “psychosocial,” or “emotional,” and may sound more normal and less embarrassing.1
The discrepancy between prevalence rates for clinically significant levels of distress among cancer patients and survivors and the percentage referred for psychosocial care suggest that distress has been inadequately addressed in the clinic setting. Psychosocial resources available in hospitals have not been transferred to or replicated in most clinics. Staff awareness of community counseling resources for referrals is often low. Poor or no reimbursement for counseling services for medically ill patients is a major reason why resources remain limited in ambulatory settings. Unlike pain, monitoring of psychosocial care by regulatory bodies, such as the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) and Health Plan Employer Data and Information Set (HEDIS), is absent.
It is in this context that care of the cancer survivor will be given, either by oncologists, internists, or family physicians, and, consequently, the need exists to explore surveillance pathways in ambulatory settings. In compliance with NCCN recommendations that all cancer patients be screened for psychological distress as part of their comprehensive medical care,1 many comprehensive cancer care centers are currently implementing screening procedures for identifying patients with moderate to high levels of distress. This approach, while new and under active study, may be relevant for rapidly identifying survivors with distress. Several instruments have already been implemented for screening purposes, such as the Hospital Anxiety and Depression Scale (HADS),7 with scores ≥ 15 indicative of a clinically significant distress level, and the Brief Symptom Inventory (BSI),6 with established separate cutoff scores for clinical “caseness” (scores of 10 and 13 among men and women, respectively). To make the screen as simple and rapid as possible, the NCCN panel proposed the use of the Distress Thermometer, a single item self-report measure of psychological distress presented in a thermometer format, that assesses level of distress. The accompanying Problem List identifies sources of distress (Fig. 1). The thermometer is a 10-point scale from (0) “No Distress” to (10) “Extreme Distress” that asks the person “How distressed were you this past week?” The Problem List, which is part of the single sheet of paper, asks whether the indicated level of distress is related to physical, family, and/or practical needs, or related to psychological or spiritual domains. The completed instrument can be quickly reviewed by a nurse or social worker, and if distress is indicated by scores ≥ 5, which are moderate or severe, then the patient is referred to mental health, social, or pastoral services (Fig. 2).8 This simple procedure can also facilitate dialogue between the patient and the treatment team with whom patients can discuss their concerns without embarrassment or fear. For surveillance of survivors, it may be useful to combine the instrument with an additional measure, such as the short form SF-36 (SF-36 Health Survey, Medical Outcomes Trust, Boston, MA), to permit comparison with survivors of other diseases.
Preliminary evidence on the use of NCCN Distress Thermometer with ambulatory prostate cancer patients suggest that the instrument is acceptable and that the scores indicating significant level of distress obtained using the thermometer correspond with those on the Hospital Anxiety and Depression Scale (HADS).8 Preliminary multicenter research on validation of the use of Distress Thermometer as a rapid screening instrument for psychological distress among ambulatory lymphoma, leukemia, lung, melanoma, and bone marrow transplant patients suggests that the score of 4 may be the optimal cutoff for screening purposes, where both sensitivity (proportion of cases correctly identified by the measure as distressed) and specificity (proportion of cases correctly identified by the measure as not distressed). The preliminary evidence also indicates that scores on the Distress Thermometer have statistically significant positive correlation coefficients with scores on established measures of distress (r = 0.58 with HADS, and r = 0.53 with BSI). Data collected so far also indicate that younger cancer patients experience more distress than older cancer patients, that female patients report higher levels of distress than male patients, and that lower functional status is associated with higher distress levels.9 This approach has not been tested among a survivor population off treatment, and this research must be undertaken. At Memorial Sloan-Kettering Cancer Center, a Survivor Surveillance Program is being developed to test this and other approaches for feasibility and efficiency. However, because validation in our multicenter trial was performed with ambulatory patients, this tool must be tested for its usefulness with survivors.
Psychosocial Concerns of Survivors
A major question remains without a clear answer: What percentage of survivors experience significant distress? Answers currently vary widely, depending on how one defines a survivor, the specific survivor population studied, the instruments used to measure distress, and whether the sample is population-based. For example, several studies suggest that women generally recover well from breast cancer. Bloom et al.10 in an early controlled study showed that women who had surgery and radiation recovered after 1 year, but women who had chemotherapy, as a group, had not recovered after 1 year. Ganz and others11, 12 showed that most women recovered well. Kornblith and colleagues,13 in a national sample of 15-20 year survivors, showed that women's concerns were no longer related to breast cancer unless they had some persistent problem such as lymphedema. Conversely, both Hodgkin and leukemia survivors14 and bone marrow transplant patients are apt to have more distress, especially in the presence of physical sequelae and disability.15–22
Although most cancer survivors are able to adjust well to their cancer experience, research suggests that distress may vary from negligible in some groups to as much as 30–40% in others.21 Psychosocial concerns of cancer survivors relate to a wide range of issues: possible late effects of treatment, neuropsychological and cognitive sequelae, changes in body image, psychological reaction to having had a life-threatening illness, and complications accompanying survivors' reentry into preillness social, occupational, and family roles.22 Survivors are vulnerable to anxiety after termination of treatment because of reduced frequency of visits, change in their daily routines, adjustment to treatment-related side effects, and uneasiness about being on their own, shown in an early paper by Holland and colleagues14 and reviewed by Kornblith.23 Minor symptoms are frightening, as they are interpreted as signs of possible recurrence.
As their health status gradually improves, survivors also deal with expectations of and overprotection by their family, friends, employers and coworkers; anxiety about the future and their ability to make plans; diminished self-efficacy; and reintegration or renegotiation into former family roles. Consequences of revealing their former diagnosis when seeking postillness employment, job and health insurance discrimination, and increased sense of vulnerability to illness and death are concerns. Survivors may also experience increased sense of temporal and physical limitations, increased perception of mortality, guilt about surviving when others have not, and vulnerability to illness.
Psychosocial morbidity among cancer survivors can be conceptualized at three levels of concern: physical, psychological, and reentry. Physical concerns encompass continued preoccupation with illness and hypervigilance regarding minor symptoms, aches and pains, fears of disease recurrence or relapse, increased fears of death, feelings of physical damage and infertility, and concerns about sexuality and attractiveness. Psychological concerns encompass increased sense of vulnerability and uncertainty about the future, feelings of personal inadequacy, fear of social rejection and stigmatization, anxiety, depression, and symptoms of posttraumatic stress disorder. Reentry problems faced by cancer survivors may include difficulties in transitioning from patient to healthy status, being regarded by others as “special,” in feeling that one's job is not secure, experiencing discrimination and/or negative peer and employer attitudes, and difficulties in obtaining or maintaining health and life insurance.24
Although resumption of former level of occupational functioning can be a protective factor from psychological distress and may improve cancer survivors' quality of life, inability to return to work after cancer treatment has been associated with financial loss, social isolation, and lower self-regard and self-efficacy.24 Noticeable reductions in employment have been shown among long-term cancer survivors,25 with about 25–30% unable to return to work due to various work- and disease-related factors such as fatigue, low energy, physical and cognitive limitations, nonsupportive work environment, inflexible hours, requirement of strong physical effort, and psychological or emotional problems.24 Factors that negatively impact survivors' return to work also include inability to work at their former pace, having to exert greater effort in carrying out preillness activities, and job discrimination such as being encouraged to leave, promotion denial, limited responsibilities, and conflicts with supervisors or coworkers.24–25
Community reintegration problems that impact survivors' emotional well being and quality of life also include difficulties with social relations due to a diminished social support network and survivor's sensitivity to social rejection, which results in further social isolation or withdrawal; financial insecurity due to staggering medical bills and continually accumulating medical expenses; and being locked into an unsatisfying job for health insurance reasons.22 Monitoring of survivors' medical and psychosocial status will facilitate early referral for signs of psychosocial distress related to their multiple concerns.26
Modifying Standards for Survivors
With passage of time after completion of their treatment, cancer survivors become less integrated into the medical system and may need monitoring of their psychosocial distress levels during and between their infrequently scheduled visits.27 Identification of cancer survivors in distress would facilitate further monitoring of their psychosocial well being as well as extended evaluation and referral. Because cancer survivors often establish enduring emotional bonds with their physicians,28, 23 oncologists may be uniquely able to facilitate change in patient's distress status by identifying survivors experiencing distress and referring them for appropriate mental health and supportive services. Some survivors may be referred early to their primary care physician with whom they had a prior relationship and with whom they can talk comfortably about problems and accept suggestions for help.
The screening approach that is currently being implemented in many cancer centers with ambulatory patients can be modified and used with cancer survivors to ensure that they receive appropriate psychosocial care. Studies of survivors suggest that those who experience continued physical or psychological and/or neuropsychiatric sequelae are at higher risk of distress. We outline below a conceptual model based on the likelihood (risk) of greater psychosocial distress. Survivors at highest risk of distress (Group 1) are those with physical sequelae that carry significant neuropsychological or psychological consequences (e.g., impaired cognitive functioning, infertility, lymphedema, amputation, disability, and/or fatigue. Group 2 are those without physical sequelae but who have psychiatric or psychological sequelae that interfere with daily functioning and quality of life (e.g., posttraumatic stress disorder[PTSD], anxiety and depressive disorder, and persistent or exacerbated psychiatric disorders). Survivors in Group 3 are those with no physical sequelae or diagnosable psychiatric disorder but who are unable to incorporate the cancer experience into their lives and identities, which results in a diminished sense of purpose, direction, and well being. This group of patients may manifest a range of subsyndromal symptoms, which have not yet been adequately explored in a research paradigm.
There are many survivors who experience cancer as an opportunity for posttraumatic growth and maturation. Increasing attention to these survivors underscores benefits that can be derived from illness experience and outweigh inherent liabilities. Placing emphasis on those survivors who may need help is in no way “pathologizing” survivors.
Group 1: patients with physical sequelae
This group of cancer survivors may be at higher risk for experiencing clinically significant levels of distress due to treatment-related: cognitive problems and neuropsychological sequelae; concerns about sexuality and infertility; amputation or disability; body or facial image changes due to surgical procedures or lymphedema; and chronic fatigue.
Among diverse groups of cancer survivors, medical problems, including late effects of treatment, presence of comorbid serious medical illness, greater treatment- or surgery-related physical dysfunction, pain, chronic fatigue, and lower Karnofsky Performance Status, have consistently been shown to adversely impact psychosocial adaptation and contribute to depression and decreased quality of life.23, 29, 30 Among survivors of hematological malignancies, who undergo one of the most intensive forms of treatment, common distressing medical concerns include neurological and cognitive dysfunction, occurrence of second malignancy, decreased stamina, and risk of relapse.31 Survivors of bone marrow transplantation (BMT) also report increased distress levels related to diminished strength, perception of self as being physically damaged, worsened appearance, diminished attractiveness due to changes in appearance, physical restrictions, fears of relapse, and concerns about sexuality and infertility.22, 31 Breast cancer survivors report having hot flashes that are more frequent, severe, distressing, and stable over time in their frequency, severity, and distress compared with the general population.32 Also, the presence of lymphedema and numbness that interferes with everyday functioning among long-term breast cancer survivors has been associated with greater PTSD symptoms, suggesting a long-term psychological impact of treatment-related medical sequelae.13
Cognitive problems and neuropsychological sequelae.
This group includes those patients who must deal with long-term effects of cranial radiation, conventional chemotherapy, high dose chemotherapy, and biological response modifiers on cognition and mood.33 Research on cognitive effects of standard dose chemotherapy has shown that 17–35% of cancer survivors experience subtle global changes in cognitive functioning and deficits across various domains of neuropsychological functioning, such as memory, concentration, ability to work with numbers, and staying focused or organized. These treatment-related cognitive changes have a negative impact on survivors' quality of life, levels of distress, and ability to meet career and educational goals.33
Research with breast cancer survivors has shown that 1) survivors treated with adjuvant chemotherapy are more likely to report cognitive difficulties than those who did not receive adjuvant therapy as part of their cancer treatment and are at increased risk of being classified as cognitively impaired on standardized neuropsychological tests; 2) the risk of cognitive impairment increases with higher doses of chemotherapy; and 3) perceived cognitive difficulties experienced in daily life such as problems with concentration, memory, and thinking are related to reported levels of depression and anxiety.34 By using conservative criteria for cognitive impairment, research examining the effects of high versus standard dose chemotherapy on cognitive function among breast cancer survivors identified cognitive impairment among 32% of women treated with high-dose and 17% of women treated with standard-dose chemotherapy. Problems with concentration, memory, and thinking were reported by respectively 38%, 32%, and 21% of survivors treated with high-dose chemotherapy, and 31%, 28%, and 11% of survivors treated with standard-dose chemotherapy. In addition, 28% of women treated with high-dose chemotherapy (vs. 12% treated with standard-dose chemotherapy) reported impaired functioning in attention, psychomotor speed, and visual memory domains that were not related to stress or fatigue.35
Mild to moderate cognitive impairment has been identified among 60% of long-term BMT survivors. Compared with healthy population norms, late cognitive deficits manifested by BMT survivors are in the domains of selective attention, executive functioning, speed of information processing, verbal learning, and verbal and visual memory.36 Six months after transplantation, 40% of survivors demonstrated impairment in psychomotor speed, 15.4% in higher level executive functioning, and 6.2% in verbal learning. Importantly, although survivors' subjective complaints about cognitive functioning may not be related to outcomes of their neuropsychological assessment, both objective neuropsychological deficits and subjective complaints of diminished cognitive performance have been related to depressive symptoms and decreased quality of life.34, 35, 37 These research findings highlight the importance of directing attention to nondisease outcomes in cancer survivors, such as perceived deficits in cognitive functioning to reduce distress related to these difficulties by initiating referral for neuropsychological assessment and cognitive rehabilitation.
Concerns about sexuality.
Most cancer treatment-related sexual difficulties are likely to appear during the first year after termination of treatment as survivors attempt to resume their preillness routines and recover from stressors of active treatment.38 Negative impact of treatment on sexuality among cancer survivors can be related to affective problems such as anxiety or depression, concerns about body functioning, poor body image, or treatment-related changes in appearance and physiology.39 Survivors of different cancers frequently report decreased sexual functioning and negative changes in body image.23 Decreased sexual interest, activity, and general functioning have been reported by 18–25% of Hodgkin disease survivors, 21–29% of leukemia survivors, 35% of testicular cancer survivors, and 22–36% of women treated for breast cancer.17, 20, 38–41, 47 Problems with marital relationships, sexuality, femininity, loss of fertility, discomfort due to pain and weakness, and concerns about spouses' extramarital affairs were reported among Chinese short- and long-term survivors of gynecological cancer.40 Concerns about sexuality have been associated with relationship difficulties and body image concerns among young long-term survivors of breast cancer, with difficulties in the areas of sexuality and sexual functioning showing persistence over time despite improvements in body image.
Loss of sexual desire and difficulty achieving orgasm has been reported by both male and female cancer survivors, with erectile dysfunction frequently reported by male survivors and treatment-related dyspareunia frequently reported by female survivors.40, 38 Problems with sexual functioning have also been reported by 26–82% BMT survivors.31, 15–18 Two years after completion of active treatment, 42% of BMT survivors reported decreased sexual desire, 17% complained of decreased sexual functioning, 25% reported inability to function sexually, and 33% reported experiencing difficulties with their partners over issues of sexuality. Male BMT survivors frequently report difficulties with achieving erection and ejaculation; whereas female BMT survivors report vasomotor difficulties, pain during intercourse, vaginal dryness, and hot flashes.18–20
Concerns about infertility.
Infertility is a common consequence of some cancer treatments, and the loss of ability to become pregnant may be especially devastating to many women survivors, especially those who have been treated for gynecologic cancers.41 The association of infertility with sexual self-image and overall self-worth may adversely impact survivors' emotional well being and interpersonal functioning. Among survivors of Hodgkin disease, treatment-related infertility has been associated with diminished psychosocial adjustment,42 and 22–30% of survivors of testicular cancer reported being distressed about infertility and sexual difficulties such as problems with ejaculation (24%) and inability to maintain erection (10%). Sterility is also a prominent complaint among BMT survivors, with up to 66% reporting the problem.43
Concerns about body image.
Body-image concerns such as distress over scars, diminished sense of attractiveness, avoidance of wearing revealing clothes, and reduced participation in leisure activities as a result of these concerns has been noted among survivors of breast cancer, head and neck cancer, Hodgkin disease, and bone marrow transplant (BMT).23, 44–47 Negative body image has been associated with poor adjustment among breast cancer survivors48 and 26% of Hodgkin disease survivors reported diminished physical attractiveness as a result of treatment that was also associated with decreased energy levels, decreased frequency of sexual activity, and depression.42 Among young breast cancer survivors, body image concerns have been negatively associated with mental health and self-esteem and positively associated with relationship difficulties.49 There is also evidence that, among survivors of breast cancer, distress related to worsened body image may persist over time despite improvements in overall sexual functioning.23 Breast cancer survivors also endorse concerns about loss of fertility and diminished desirability as women and sexual partners as a result of treatment-related changes in appearance and physiology.47
Reduced quality of life in the area of sexual functioning among long-term cancer survivors suggests that special attention should be paid to problems in this area to counteract treatment-related impairments that negatively affect quality of life, emotional well being, and relationships.38, 39 Although many long-term cancer survivors may experience chronic sexual difficulties, their concerns about sexual functioning may not be identified or addressed during interactions with medical providers. Routine medical follow-up appointments may provide a good opportunity to proactively inquire and identify problems in sexual functioning among cancer survivors who may need further intervention.38
Chronic low energy or fatigue.
Chronic fatigue and low energy levels are among the most frequent complaints of cancer survivors, coupled with increased need for rest, decreased physical stamina, and increased weakness and tiredness.50–52 Chronic fatigue, reduced energy levels, insomnia, and weakness related to reduced participation in leisure activities have been reported by survivors of Hodgkin disease and BMT.23, 15, 53, 54 For Hodgkin disease survivors, the levels of fatigue did not return to normal levels for at least 2 years after completion of active treatment,55 and testicular cancer survivors have fatigue levels exceeding those in the general population, although not as high as levels observed in survivors of Hodgkin disease.56 Energy deficits and sleep disturbance also remain problematic for BMT survivors long after transplantation,57 with fatigue rated as one of the most problematic concerns that negatively impacts their spirits and quality of life.15, 18, 58
Possible biological basis for cluster symptoms.
Recent research findings suggest that internal release of inflammatory cytokines in response to illness or treatment may account for flu-like symptoms or illness behavior, which often include a cluster of symptoms, sad mood, fatigue, weakness, diminished stamina, sleep disturbance, poor concentration, and cognitive difficulties.59–62 Whether this mechanism could apply to survivors' symptoms, well after treatment has been completed, is not clear. Interferon and Il-2 produce poor concentration, depressed mood, fatigue, and psychomotor retardation.63–64 These symptoms may persist well after completion of treatment in survivors. Studies of possible longer term effects are needed. Immune system activation by a low-level infection in human laboratory research participants has been shown to have a negative impact on mood and memory as manifested by increased levels of anxiety and depression and decrements in performance on tests of verbal, nonverbal, immediate and delayed memory, and these effects were associated with cytokine secretion.64 Preliminary research and clinical evidence suggest that cytokine administration induces symptoms of depression; that diseases associated with immune system activation and that have an inflammatory component tend to be associated with disturbances in mood, behavior, and cognitive functioning; and that antidepressants that have antiinflammatory properties may be helpful in managing affective and behavioral consequences of immune system activation.60 These findings offer a new area of research in cancer patients for psychooncology in exploring neuropsychological responses that may be physiologically induced by cancer treatment and may have long-term effects in survivors.
Group 2: patients with psychiatric and/or psychological sequelae
Cancer survivors in Group 2 are physically healthy but experience psychological sequelae, such as posttraumatic stress response symptoms, anxiety disorders, mood disorders, and persistent or exacerbated psychiatric disorders. Distress among this group of survivors may be related to fears of recurrence, anxiety preceding follow-up visits, and paradoxical rise of anxiety after treatment completion because of perceived loss of protection from medical providers, decreased medical surveillance, and perception of being on one's own. Decreased confidence about the future in the form of “Damocles syndrome”65 has been noted, since the early 1980s, among cancer survivors who may persistently question if they did or still do have cancer. Fears of recurrence are common among survivors of different sites of cancers, with prevalence rates ranging from 42% to 89%.23 Fears of recurrence may be triggered by physical symptoms, such as new aches and pains, fatigue, joint stiffness, check-up appointments, and knowing a cancer survivor with worsening disease.15, 66–67
High levels of distress among this group of cancer survivors may be indicative of anxiety or depression symptoms, posttraumatic stress symptoms, conditioned responses of nausea or vomiting on encountering reminders of treatment,68 concerns about self-image, diminished physical attractiveness, and guilt about relatives who may be perceived as having increased risk for developing cancer because of survivors' illness. Survivors with a history of poor social support, psychiatric difficulties, and impaired psychosocial functioning before cancer treatment may be at especially high risk for developing clinically significant psychological distress and psychiatric symptoms after termination of treatment.69–71
Research has shown that a significant proportion of Hodgkin disease survivors (22%), acute leukemia survivors (14–31%), testicular cancer survivors (18%), long-term survivors of nonsmall cell lung cancer (22%), and breast cancer survivors (22–47%) report scores indicative of significant affective distress.23, 72–73 A substantial proportion (33–54%) of BMT survivors experience significant psychological and emotional distress, such as mood disturbance, tension, and depression after completion of treatment.16, 18, 74 High prevalence rates (45–65%) of anxiety and depression have been reported by breast cancer, BMT, colorectal, prostate, and lung cancer survivors.23 Long-term survivors of pediatric leukemia, Hodgkin disease, and non-Hodgkin lymphoma were more likely to report symptoms of depression and somatic distress than their sibling controls, and having high dose chemotherapy contributed to the risk of developing these symptoms.74 Elevated levels of distress were also reported by long-term survivors of testicular cancer whose anxiety scores—as captured by HADS—were reliably higher than those among males in the general population.56
Psychological distress indicative of psychiatric disorder was reported by 31% of physically healthy BMT and leukemia survivors 5 years after termination of active treatment.21 In a sample of BMT survivors, psychological problems reported 1 year post treatment included fears of disease recurrence (27%); fears about future health, finances, work, and family relations; increased vulnerability to future illness and death; Damocles syndrome; decreased sense of personal control; resentment about increased dependence on others; anxiety; depression; and feelings of isolation due to a perception of being different. Additional survivor concerns included fear of relapse and delayed treatment effects that may occur months to years after termination of treatment, such as chronic graft versus. host disease (GvHD), cataracts, osteoporosis, hip and spine fractures, hypothyroidism, respiratory impairment, risk of second malignancies, survivor guilt, and anger at oneself, others, or the disease.22
Symptoms of posttraumatic stress disorder (PTSD) and stress response syndromes.
Cancer can be conceptualized as a multidimensional trauma, carrying a threat to life and body integrity, disability, disfigurement, pain, loss of social and occupational functioning, and dependence on others. The sudden onset of illness, perceived loss of control imposed by the cancer experience, chronic, cyclical, and anticipatory nature of threat in cancer, and its uncertainty and intangibility may have traumatic consequences for survivors.75 Unlike traumatic events of external nature, the cancer experience embodies an internal threat and may be perceived as inescapable, especially when scars, pain, new symptoms, physical limitations, diagnostic and treatment procedures, and routine follow-up appointments serve as reminders of the experience and triggers of traumatic stress responses.75
Significant stress response symptoms are common among cancer survivors. Although only about 10% of survivors experience symptoms that meet full DSM criteria for a PTSD diagnosis, a substantial proportion of survivors (up to 48%) report a range of PTSD symptoms, including painful reexperiencing of cancer diagnosis and treatment-related events, avoidance of reminders and intrusive thoughts about the cancer experience, and recurrent experience of emotional states associated with cancer treatment.76, 77 Among women survivors of lymphoma, breast, colon, and ovarian cancer, up to 20% meet PTSD criteria, and 10% of male survivors of lymphoma, prostate, and colon cancer were shown to meet the criteria more than 1 year after the diagnosis.78 Long-term survivors of breast cancer have been shown to report high levels of full and partial PTSD, greater emotional distress, and lower physical and psychological quality of life than matched population controls.79
Among breast cancer survivors, 37% report reexperiencing cancer-related events in the form of nightmares, flashbacks, and intrusive thoughts or emotions, and 11% report avoidance symptoms such as avoiding reminder thoughts and activities, and restricted affect or detachment characteristic of traumatic stress response.76 Research has also shown that 5–13% of breast cancer survivors report subsyndromal PTSD symptoms, and 6–13% meet criteria for full PTSD syndrome.80–82 Cancer-related intrusive thoughts (a type of reexperiencing symptoms characteristic of PTSD) were noted among 46% of breast cancer survivors 3 or more years after breast surgery, and even though these intrusive thoughts were not associated with distress itself, these patients showed significant association with higher levels of anxious preoccupation and poor psychological adjustment.83 There is also some evidence that stress-related disorders such as PTSD and major depression have neuropsychological correlates, and that among breast cancer survivors, having distressing thoughts (cancer-related memories) was associated with significantly smaller (5%) left hippocampal volume.84 The ambulatory oncology setting can be a good context for identification of those cancer survivors who experience symptoms of posttraumatic stress disorder or other stress response syndromes. Once identified, these patients can be referred for treatment to improve their emotional well being, quality of life, and overall level of adjustment.75
Group 3: patients with subsyndromal symptoms and existential concerns
This group of survivors may have no physical symptoms or formal psychiatric disorders but may, nonetheless, experience a diminished sense of purpose and direction in life as a consequence of their cancer experience. They may not be able to attach a tolerable meaning to the experience, may have diminished resilience, and manifest subsyndromal symptoms (e.g., not reaching criteria for a psychiatric diagnosis). For this group of cancer survivors, referral to psychosocial care may increase resilience, reduce vulnerability to exacerbated distress, and facilitate posttraumatic growth. The main psychosocial rehabilitation task for this group of survivors is integration of their cancer experience into their personal identity, stated well by Kathleen Conway, “The hard task for me and my family is to integrate each of our experiences of cancer into who we are.”85
Having cancer may challenge individual's assumptions about the self, the world, their relationships, and the future. Fundamental beliefs about personal control, invulnerability, self-worth, benevolence and predictability of the world, the nature of attachments, and assumptions about autonomy and dependency in relationships may be shattered by the cancer experience.28 Cancer survivors are confronted with their mortality, threatened by permanent separation from loved ones, and may frequently experience situations outside of their personal control. They may experience unwelcome changes in previously held social and occupational roles and may be unable to fully enjoy life because of acquired physical limitations. Cancer experience may lead survivors to question their implicit and explicit assumptions and force them to develop new motivational structures encompassing renegotiated short- and long-term goals. Cancer survivors may also need to renegotiate the nature of their relationships and to develop a new identity and belief system that can incorporate their illness experience.28, 86 When survivors cannot assimilate their cancer experience into their belief system or are unable to accommodate their previously held assumptions to account for the illness, they may experience loss of personal or spiritual meaning, existential isolation, apathy, and develop chronic depressive rumination.28, 86
Reexamination of core beliefs and renegotiation of important relationships and social roles may also have positive consequences, such as more creative, valued, engaged and improved relationships, changes in life priorities and personal attributes, posttraumatic growth, increased sense of purpose, greater appreciation of life, and a new life philosophy.28, 87–88 Models of posttraumatic growth87 suggest that, given opportunity, cancer survivors may identify new areas of strength and vulnerability; develop greater intimacy with and acceptance of others; derive a sense of personal strength from surviving painful and frightening experience; and learn to identify, tolerate, and express difficult emotions. On an intrapersonal level, posttraumatic growth may result in a deepening of survivors' philosophical and spiritual beliefs. On an interpersonal level, survivors may find new value and greater closeness in relationships as they learn to disclose their vulnerability, experience support from others, and develop increased empathy and self-awareness. Posttraumatic growth also entails finding new opportunities in life, increasing self-reliance, developing new interests, knowing that one can count on others in time of trouble, improved understanding of spiritual matters, increased religious faith, and ability to accept the way things are when outcomes are not as anticipated or hoped for.87
Research has shown that ability to find new meaning and purpose in life characteristic of posttraumatic growth is positively associated with survivors' adjustment, emotional well being and quality of life.28, 45, 89–91 Among survivors of early stage breast cancer, positive reappraisal coping was predictive of positive mood and better perceived health at 12 months follow-up, and at least 83% of women in this group could identify at least 1 benefit of their breast cancer experience.92 Long-term survivors of lung cancer who did not manifest distressed mood were able to describe their cancer experience in more positive terms around central themes that included existential concerns, health and self-care, physical ability, psychological adjustment, and social support.93 A qualitative review of natural correspondence between survivors of ovarian cancer and an ovarian cancer newsletter found that these women were able to describe their cancer experience and its effects on their lives in both negative and positive terms and that they often demonstrated resourcefulness and creative problem solving by sharing coping and survival strategies.94 Research also suggests that cancer experience may have a positive influence on lifestyle change among adult cancer survivors who, in one study, reported a positive influence of cancer on smoking and diet: 46% of smokers reported quitting smoking, and 47% of respondents reported changing their dietary habits.95
Research on positive outcomes among cancer survivors suggests that many view their treatment as an event that led to reevaluation of their life priorities, greater appreciation of relationships, greater sensitivity to needs of others, posttraumatic growth related to perceived threat to life, improved coping ability, and greater overall life satisfaction.74, 40, 96 These preliminary findings are encouraging and suggest a high level of psychological resilience among many cancer survivors. At the same time, cancer survivors' hopefulness may be tempered by uncertainty, and, for some survivors, it may be difficult to find meaning and personal growth in their cancer experience. Cancer survivors who experience distress over existential and spiritual concerns may require psychosocial interventions to address their search for meaning, purpose, and direction in life. Mental health professionals need integrative models to contextualize survivors' existential concerns and to help survivors draw adaptive conclusions from their cancer experience.28 The social–cognitive transition model (SCT)28 and the model of meaning making in the context of stress and coping86 are examples of such integrative frameworks.
In the model proposed by Park and Folkman,86 meaning making is crucial in coping and adapting to a stressful life experience such as cancer. Meaning is conceptualized at two levels, 1) global meaning evolves through accumulation of life experience and includes an individual's valued goals, enduring beliefs, core assumptions, and expectations about the self and the world; 2) situational meaning refers to person–situation interaction and involves appraisal of current events that determines an individual's coping responses. Global meaning subsumes individual beliefs about meaningfulness, benevolence, controllability, predictability, and fairness of the world, as well as beliefs about causation, self-worth, and personal control. The motivational dimension of global meaning imbues an individual's life with a sense of purpose and direction. According to the model, global meaning is rather stable, as individuals seek out belief-confirming experiences and interpret new information in light of their previously held assumptions.
Situational meaning involves appraisal of current events and includes perception of personal relevance and significance of the event, coping, and the meaning the individual attaches to the event after it is over. A stressful event, such as cancer experience, may be appraised regarding its relevance to individual beliefs, goals, values, and commitments, whereas its importance is established by the degree to which they are threatened; then appraisal is made regarding availability of resources to deal with the experience. According to the model, because of its potentially assumption-shattering nature, cancer experience may induce incongruence between survivors' perception of the experience and their global beliefs and valued goals. This state of dissonance may produce feelings of discontinuity, incoherence, unpredictability, and helplessness. Consequently, to make meaning of the illness and its existential impact becomes one of the major tasks of cancer survivorship and is directed at reduction of inconsistencies between present life realities and previously held goals, beliefs, values, and commitments.
An Action Plan to Meet Psychosocial Needs of Cancer Survivors
The spectrum of problems experienced by cancer survivors suggests that rehabilitation efforts for this population should be comprehensive in nature, that problems should be identified, interventions implemented as early as possible after completion of treatment, and that special attention should be directed to survivors with persistent physical problems and with preexisting psychosocial, psychiatric, or social difficulties.23 Successful interventions will need to target survivors' emotional and social isolation and may involve both patients and their immediate social or family network to reduce communication barriers, facilitate renegotiation of survivors' social and occupational roles and their reintegration into the noncancer world.23 Attention to life style, nutrition, and wellness in general, should be a part of ongoing review.
An action plan is needed to ensure that psychosocial problems of cancer survivors are assessed as a part of routine surveillance by oncologists or their family physicians. Cancer survivors in Group 1 may need to be assessed for psychological problems at regular intervals at the time that the physical effects of their treatment are evaluated (e.g., lymphedema, pain, amputation). Group 2 survivors are more likely to be identified by use of a rapid screen instrument, such as Distress Thermometer described earlier. In Group 3, the issues are more subtle and may be best handled by counseling services outside of medical follow-up care.
It is a high priority that cancer centers address how surveillance of survivors should be performed. Likely, this will have to vary by site of cancer because some survivors' ongoing symptoms require care by their primary team, whereas others need only an annual visit. Multidisciplinary panels should study these complex issues to test the feasibility of some models and begin to develop guidelines for follow-up. The NCCN Panel on Survivorship Surveillance, recently established, should offer some recommendations. A psychosocial component must become a part of any overall plan for surveillance of cancer survivors, and it should include supportive services. A minimal standard of psychosocial care of cancer survivors should be established that can be used as a quality benchmark. It must be monitored, and an audit process must be put in place to ensure adequate psychosocial attention and care for survivors. 1
Table 1. Psychosocial Screening and Surveillance of Cancer Survivors: Levels of Risk for Psychosocial Distress
Group 1 Patients with physical sequelae
PTSD: posttraumatic stress disorder.
Cognitive or neuropsychological problems
Sexual functioning and infertility
Amputation or disability
Body or facial image changes
Chronic low energy or fatigue
Group 2 Patients with psychological sequelae
Absence of physical symptoms
PTSD or stress response symptoms
Persistent or exacerbated psychiatric disorders
Group 3 Patients with subsyndromal symptoms
Absence of physical and formal psychiatric disorders
Diminished purpose and direction
Inability to attach tolerable meaning to cancer experience