Abstract
While the majority of childhood cancer survivors will have successful psychosocial adaptation after treatment, childhood cancer and its associated late-effects increase the risk for adaptive challenges and psychological symptoms later in life. In this chapter we focus on understanding the psychological and adaptive challenges that arise in this population in the areas of psychological symptoms, quality-of-life (QOL), and social adaptation. Risk factors for poor psychosocial and QOL outcomes, as well as high-risk survivor groups, and the role of professionals in identifying and addressing survivors with poor adaptive outcomes are also presented. Results of research studies, particularly studies of large cohorts of survivors are presented to frame the prevalence and types of problems common in this group, and information and case examples drawn from clinical experience are presented to complement this research and to illuminate the effects of cancer on individual survivors.
1 Introduction: Cancer Is a Stressor
The diagnosis and treatment of childhood cancer is a major challenge to the family and the diagnosed child. Treatments are often physically and emotionally arduous and the illness typically disrupts the child’s normal school, social, and developmental context. While many patients show signs of psychological distress or acute stress reactions at some point during their treatment [1, 2], most will successfully adapt to these challenges and be able to establish positive psychological outcomes during and after treatment. In fact, studies of long-term survivors of childhood cancers generally indicate that the vast majority do not suffer from severe psychological distress and go on to experience positive adaptation in adulthood [3–5]. At the same time, cancer and its associated late-effects increase the risk of children having more adaptive challenges and psychological symptoms later in life. In this chapter, we focus on understanding the psychological and adaptive challenges that arise in this population, risk factors and high risk survivor groups, and the role of professionals in identifying and addressing these issues (Table 17.1).
Understanding how an individual’s adjustment and quality-of-life are tied to a cancer experience that may have occurred a decade or two before is not straightforward. Individual development is so multiply determined that pinpointing individual causes of psychological and social adjustment is probably impossible. In addition, adjustment difficulties and some psychological symptoms are common in the general population, so reports of these problems and disorders in survivors may only reflect the background level of disorders expected in the general population. To address this concern, we rely whenever possible on research findings, particularly from studies of large groups of survivors to provide objective information about the kinds of challenges survivors, as a group, are most likely to face. At the same time, we also present information in the text and case examples that are drawn from our own clinical experience to complement the research results and to illuminate the effects of cancer on individual survivors. (Names, ages, gender, and other details of the survivors presented in the cases studies may have been changed to protect their confidentiality. Details from more than one individual may be combined into a single case for ease of presentation.) Given the variability in childhood cancers and individual differences in children, presentation of these topics is not intended to be exhaustive, but rather to provide an introduction to the most common issues that arise among long-term survivors of childhood cancers.
2 Psychosocial Outcomes
2.1 Psychological Distress
Research on medical and psychological outcomes of pediatric cancer survivors has benefitted from efforts to assemble large cohorts of survivors treated at multiple centers [3–6]. Making use of standardized assessments of outcomes in these large samples, studies of these cohorts have attempted to overcome the limitations common in smaller studies at individual treatment sites (e.g., poor generalizability, lack of power, selection bias) [3]. Because it includes psychological outcome data from a control group of non-treated siblings, findings from the Childhood Cancer Survivors Study (CCSS) [7] have also addressed the lack of controls and questions about the adequacy of normative data that limited many previous studies. Overall, studies from the CCSS and other large survivor cohorts have demonstrated that the majority of survivors of childhood cancers do not experience significant psychological difficulties after treatment. However, as a group, survivors have been found to be at increased risk for psychological distress compared to their peers, and a significant minority of survivors experience symptoms of maladjustment. For example, studies from the CCSS have shown that most survivors do not experience significant impairments in mental health functioning, although 17.2 % do, and survivors are more than twice as likely to have elevated levels of psychological symptoms compared to their siblings [4]. Similarly, results from the Swiss Childhood Cancer Survivors (SCCS) study have shown survivors are at increased risk for high levels of psychological distress. In both the CCSS and the SCCS, survivors were at increased risk for anxiety and depression symptoms [4, 5]. Survivors in the CCSS have also been found to have elevated rates of suicidal ideation [8], and post-traumatic stress symptoms [9]. Taken together, these studies cited above provide some of the strongest evidence that prevalence of psychological distress and adaptive problems is increased in adult survivors of childhood cancers. However, it is important to note that this research focuses almost solely on prevalence of psychological symptoms and not of diagnosable psychiatric disorders. This reflects both the relative difficulty of measuring psychiatric disorders in survey research, and the desire to report on psychological distress rather than exclusively on psychiatric diagnosis. Appreciating this distinction has important implications both for understanding the research on survivors’ psychological late-effects and for planning appropriate assessment and intervention programs. It bears noting that evidence of survivors’ elevated symptoms of distress does not necessarily mean they have a greater prevalence of mental disorders as defined in the psychiatric nosology. Criteria for a psychiatric diagnosis typically include a minimum number of key symptoms that endure for a minimum amount of time, and are associated with at least some amount of impairment. Some survivors with elevated symptoms of distress may not have symptoms of sufficient severity or with sufficient associated impairments to qualify for a particular diagnosis, and others may have severe symptoms that simply do not coincide with the patterns derived from study of mental illness. For a complex diagnostic category like posttraumatic stress disorder (PTSD), the correspondence between symptoms and diagnosis can be particularly difficult to discern since the diagnosis requires not only a particular constellation of symptoms, but also evidence they are all associated with a specific past event and cause current functional impairments. Evidence of higher levels of posttraumatic stress (PTS) symptoms from surveys of childhood cancer survivors may not indicate these survivors have higher rates of posttraumatic stress disorder, and the proportion of survivors who are found to have higher than expected PTS symptoms varies widely depending on how the constellation of PTS symptoms is defined [9–11].
Both investigators and clinicians intentionally adopt a symptom focus rather than mental disorder focus, in part to insure a broad assessment of survivor functioning. Following recommendations from the National Comprehensive Cancer Network (NCCN) [12–14] and others [15, 16], psychological and behavioral symptoms that cause subjective distress are assessed and targeted for intervention, whether or not a psychiatric diagnosis is present. As we discuss in assessment and intervention sections below, clinicians working with long-term survivors should not expect that all of those who report symptoms of psychological distress will have a psychiatric disorder or necessarily require mental health treatments. As we highlight below, understanding factors associated with poor psychological adjustment in survivors can help providers focus on those survivors who are at highest risk.
2.2 Quality of Life
Studies of quality-of-life (QOL) in cancer survivors generally focus on health-related QOL, a concept that aims to reflect the impact of health on the individual’s functioning in physical, emotional, and social domains [17, 18]. Given their risk for medical late-effects described in previous chapters in this book, and their risks for psychological and social challenges described here, it should not be surprising that childhood cancer survivors also report impairments in their QOL, particularly in physical health domains [3, 19, 20]. Compared to their siblings, survivors in the CCSS have lower average scores for QOL in the physical but not emotional functioning domain [19]. Differences between mean scores for sibling and survivor groups were not large and survivors’ scores were only slightly lower than expected population norms. However, when the proportion of individuals with very low QOL scores was examined, a large proportion of these survivors showed significant impairment in problems related to fatigue (47 % of females and 32 % of males compared to the 16 % that would be expected in the general population [19]). This was similar to findings from the British Childhood Cancer Survivor Study (BCCSS) which also reported a higher than expected proportion of survivors with very poor physical health functioning [20]. Similarly, in a CCSS study examining health problems that interfere significantly with activities of daily living, 12 % of survivors compared to only 2 % of their siblings reported these problems [4]. Survivors were also significantly more likely to report limitations in their physical activities and general health [4, 9, 21], compared to controls [4, 19].
2.3 Social Adaptation and Functioning
Although many childhood cancer survivors are able to adapt and experience success within the domains of school, work, and interpersonal functioning, there is evidence that childhood cancer survivors can experience a number of medical, neurocognitive, psychological, and/or physical challenges that can impair their ability to attain developmental milestones [22]. There are circumstances in which even relatively minor changes in neurocognitive functioning can have a significant impact on a survivor’s adaptation and can increase their risk of psychosocial issues. Learning difficulties, combined with the symptoms of depression or anxiety, can create even greater barriers to success around social roles and have a negative impact on school performance, employment, and interpersonal relationships. Beyond learning issues, the ongoing medical follow-up needed and the real possibility of additional medical problems are other stressors survivors are managing in the context of trying to maintain “real world” expectations.
The literature has highlighted the neurocognitive issues associated with treatment to the central nervous system (CNS) and readers may refer to the other chapters in this book that address this more throughly. Patients who have received radiation therapy or intrathecal chemotherapy may be at greatest risk for learning difficulties. The CCSS data has indicated that the utilization of special education services has been significantly higher for survivors (23 %) when compared to sibling controls (8 %). Patients with brain tumors, Hodgkin lymphoma, and leukemia, and patients diagnosed before the age of five, were identified at greatest risk for needing special education services [23]. These findings are similar to the results of a Canadian cohort study in which survivors were reported as more likely to be retained, needing special education programs, and having educational/school problems when compared to controls. Patients who had been treated for CNS tumors, leukemia, and neuroblastoma were identified as groups with significant risk factors around educational achievement [24].
Given the issues many cancer survivors experience as a result of learning deficits or ongoing medical concerns, it is not surprising that finding and maintaining employment can be a challenge. While this is addressed in more detail in Chapter 24 of this book, briefly, the issues survivors experience around securing employment can be associated with physical health difficulties [25] or neurocognitive issues. Results from the CCSS indicated that survivors with poor physical health were eight times more likely to be unemployed than healthy survivors, with health related concerns reported as the barrier to employment [26, 27]. The risk for unemployment increases in relation to the chronic medical conditions experienced by survivors post-therapy and this is particularly important given that 73.5 % of the CCSS survivors reported at least one chronic medical condition 30 years after cancer diagnosis [28]. Unemployment also has significant implications for health care access given that in the United States health insurance coverage is typically attained through one’s employer. Data from the CCSS has shown that survivors are more likely than siblings to have difficulty acquiring health care coverage [29] and to have Medicaid or Medicare as their insurance carrier. Lack of insurance can significantly impair a patient’s ability to receive appropriate follow-up care and the additional stress associated with limited access may increase vulnerability to psychological distress.
The multifaceted issues faced by survivors of childhood cancer can also have an impact on interpersonal relationships. It is not unusual for survivors to report difficulties associated with social relationships, dating, and a lack of intimacy. The social challenges can lead to subsequent delays around psychosexual development, independence, and identity. In a study of Dutch survivors, those with slower psychosexual development were more likely not to be married and those with slowed autonomy were less likely to be living independently. As with other studies, brain tumor survivors were identified as a high-risk group and documented as being more likely not to meet developmental milestones according to a typical trajectory (Table 17.2) [22].
A number of large cohort studies have identified childhood cancer survivors as being less likely to be married when compared to the general population [30, 31]. As with other social adjustment data, survivors of CNS tumors are at greatest risk for not becoming married. Late effects of radiation, such as short stature, neurocognitive deficits, and poor physical functioning contributing to marital status [32]. Issues associated with neurocognitive functioning and the ability to live independently clearly impact ability to marry [33] as do physical functioning limitations/restrictions [34]. Interestingly, of those survivors that do marry, divorce rates do not significantly differ from the general population [35].
In social and sexual relationships other than marriage, survivors of childhood cancer can also experience a number of obstacles, frequently based on disease burden [36]. Issues associated with potential sexual dysfunction secondary to cancer and its treatment pose significant barriers to intimate relationships and create a potential vulnerability to anxiety and distress. In addition, for those who are able to develop intimate relationships, the issues associated with possible infertility as a result of cancer treatment create another obstacle. It is not uncommon for young adult survivors to have questions regarding their sexual functioning and fertility, and to need assistance with communicating concerns to their partner. This is an area that can be particularly difficult to broach with a medical provider, but if left unaddressed, can lead to significant psychological distress and the potential loss of a relationship.
2.4 Risk Factors
Given that only a minority of childhood cancer survivors will be expected to have significant psychological late effects, many studies have attempted to identify important risk factors for psychological distress in this population. Since the relevance of specific risk factors can vary across types of cancer, age groups, and even social and cultural contexts, an exhaustive treatment of risk factors is beyond the score of this chapter. Instead, we present an overview of the risk factors most important for understanding and assessing childhood cancer stress along with our interpretation of the ways in which these factors may influence development and adaptation in individual survivors. Risk factors can be an important guide to assessing and monitoring survivors, however, it is important to appreciate that the course of cancer survivorship is dynamic and individuals who may initially present with no risk factors require ongoing monitoring and evaluation as their risk status and emotional outcomes can change significantly over time (Table 17.3).
In terms of demographic factors associated with psychological adjustment, female survivors have been found to be more likely to report psychological problems [3, 4], a finding consistent with studies in normal populations [37, 38], suggesting that females may be more vulnerable to distress or more willing to report psychological problems when they occur. Other demographic variables such as lower income, lower education, disability status, and unmarried status, have been associated with poor psychological and QOL outcomes in a number of studies [4, 19], but it is important to note that these factors may be both the result of poor psychological adaptation, as well as contributors to it. For example, depression would be expected to impair functioning in a way that makes it difficult for survivors to function in work and school environments, while problems with work and the stress of low income would also be expected to contribute to depression [39]. Although the precise relationship of these sociodemographic variables with psychological adaptation may not be known, their relationship with adaptation problems makes them important indicators of groups of survivors who should be considered at higher risk. Background factors or pre-existing conditions such as psychiatric history and pre-morbid functioning are important to consider, as these are known or suspected to be associated with poor outcomes after cancer. Similarly, extreme emotional or behavioral reactions that occurred during treatment suggest increased vulnerability to future psychological distress and should be considered risk factors for future adjustment problems.
Specific aspects of a child’s cancer and cancer treatments are also thought to increase risk for long-term psychological adjustment problems. Conceptually, we would expect intensive treatments to result in later adjustment problems if these treatments increase distress or developmental disruption during treatment, disrupt the ability to learn or acquire certain skills, or increase the risk for medical late-effects including cognitive limitations, physical limitations, physical disfigurement, secondary cancers or chronic conditions—and there is data to support this expectation. Within cancer-related factors, a brain tumor diagnosis is one factor consistently found to be associated with psychological symptoms, poor functional outcomes, and poor QOL [3, 8]. This association is likely due in large part to the negative impact that CNS tumors and associated treatments can have on learning, educational, and social skills later in life (described below). Survivors of bone tumors have also been found to be at higher risk for psychosocial problems in some studies, which may reflect the impact of physical mobility problems and pain on both physical and emotional quality of life [40]. Radiation therapy which can disrupt normal development of treated areas in later life has been associated with psychological problems, poor functional outcomes, and reduced QOL, though the effects will be different across types of radiation and types of cancers [3]. Cranial radiation, for example, can cause neurocognitive late-effects and growth deficiency, while pelvic radiation can also cause problems with growth, as well as mobility and fertility; radiation to each of these fields have been found to increase risk of adaptation problems later in life [3, 41]. Similarly, chemotherapy generally, especially in intensive chemotherapy regimens, has also been associate with greater likelihood of impaired QOL and psychological functioning [4, 42, 43]. Age at diagnosis might be expected to affect risk of long-term psychosocial complication since it could affect both the child’s experience of treatment, disruptions to their developmental course, and their sensitivity to the effects of specific treatments. Several studies have not supported relationship between age of diagnosis and later adjustment [8, 19], indicating no particular age group should be considered to be at increased risk. Nonetheless, clinicians working with individual survivors should consider how age at time of treatment may affect survivors differently. For example, those diagnosed at younger ages may be less likely to recall their treatment and less likely to identify as “survivors” than those diagnosed in their teenage years [44].
As noted, the effects of childhood cancer treatments on later psychological functioning may be due, in part, to their effects on long-term physical health, and poor physical health functioning has been noted to be strongly associated with poor psychological functioning in this population. Survivors with multiple medical problems have been found to report more psychological distress [19, 45], and a study of suicidal ideation among survivors [8] showed that poor health outcomes, including pain, are associated with greater likelihood of reporting suicidal ideation even after adjusting for depression. Survivors with poor physical health were also noted to be less likely to be employed, married, or have medical insurance, and more likely to have low educational attainment, and at least one major medical condition [19]. This, too, is consistent with previous research showing that medical problems, especially chronic conditions that are likely to interfere with routine functioning, are associated with significant psychological morbidity. Childhood cancer survivors are vulnerable to a number of medical late-effects (described in previous chapters) which would be expected to carry this kind of psychological burden as seen in other groups. In particular, physical symptoms that lead to loss of important aspects of individual identity—sexual dysfunction, problems with bladder or bowel control, as well as disfigurement, fatigue, and cognitive changes—can be particularly burdensome and lead to increased psychological distress. Similarly, the loss of independence associated with not being able to participate in age appropriate activities or work, or any condition that limits independence should be considered a likely risk factor. Because survivors are likely to be diagnosed with chronic conditions at a much younger age than their peers [28], they may have fewer coping resources and their educational, career, and relationship plans may be more vulnerable. Developing a chronic condition while still young, many survivors feel unfairly burdened, a sentiment sometimes expressed as “I am too young for this!” Some survivors find the diagnosis of a treatment-related condition extremely anxiety provoking, raising fears that they may be never feel at ease with their health again, especially if the new condition is chronic and unlikely to be cured. “It’s not over when it’s over,” is a phrase commonly heard from survivors expressing a feeling of resignation that they are still not free from the negative impact of cancer despite having been cured of their disease.
3 Vulerable Periods and Populations
3.1 CNS Treated Survivors
The literature has focused on identifying survivors of childhood cancer who are at greatest risk for psychological distress, and though findings can be inconsistent, survivors of pediatric brain tumors are consistently noted as a high-risk cohort for psychological morbidity. The significant burden of disease location, treatment intensity, and treatment toxicity all contribute to this finding. The neurocognitive, physical functioning, and medical issues that can arise from having a brain tumor can be significant and the types of issues experienced relate to diagnosis and tumor location. Surgery is the most optimal choice of up-front therapy for children with brain tumors and the extent of resection attained has been related to cure of disease [46]. While many surgeries are successful and patients experience minimal to no post-operative complications deficits, there are a subset of patients who have neurological impairments either as a result of the tumor pressing on important areas of the brain pre-diagnosis, due to the surgical resection itself, or complications from surgery. Although we have mentioned throughout the chapter that those survivors treated with more intensive treatments are at greatest risk for the development of medical, physical, and emotional difficulties, research has demonstrated that even patients who are treated for brain tumors with surgery as their sole form of treatment have been identified as having impaired IQ, academic achievement, and adaptive behavior as compared to the normative population [47] and have high utilization rates of special education services (Table 17.4) [48].
In addition to the challenges posed to patients as a result of surgical intervention, the actual location of the tumor and the tumor diagnosis are of great significance in terms of survival and quality of life. For instance, craniopharyngioma is a tumor with a high cure rate and these patients tend to be treated with surgery and/or radiation therapy. While a curable disease, the location of this tumor comes with significant morbidity [49]. Survivors must cope with memory issues, sleep disturbance (narcolepsy), mood issues, and certain endocrinopathies, such as hypothalamic obesity that can severely impact physical appearance. These are patients who are seen in the clinic setting for whom it may be difficult to find an appropriate school placement due to the complex learning, medical, and behavioral issues experienced. It is not uncommon for families to report to clinicians the need to lock kitchen cabinets due to insatiability associated with the disease. The psychosocial challenges facing these survivors such as significant academic needs, physical appearance changes, behavioral issues that impact social functioning, and fatigue that can negatively impact employment, leaves this subset of patients at a particularly high risk for developing depression and/or other psychological adjustment issues.
In addition to tumor location and diagnosis, the treatment utilized for CNS tumors such as cranial radiation, intrathecal chemotherapy, and high-dose chemotherapy with stem cell rescue, increase the number of learning, physical, and medical problems [23, 24, 50] and leave survivors vulnerable to psychological distress. The effect of multiple medical issues is dynamic and can have a negative cumulative impact on psychological adaptation over time. For instance, school-aged survivors who struggle academically despite receiving special education services are at-risk for depression and anxiety. It is not unusual to hear of patients spending 4–5 hours on homework a night as a result of slowed processing speed. The time spent on homework and the stress associated with academic success can leave survivors with anxiety and significant social isolation. These students are then ill-prepared to manage the social demands at the higher education level and tend to experience failure when they transition to college. Such failure can lead to disappointment, feelings of helplessness and hopelessness, withdrawal, and subsequent depression. There are other situations in which patients have difficulty accepting the help that they need and continue to struggle with their academics and psychological adjustment, despite schools and teachers being willing to accommodate their learning needs. The “rejection of help” can have a cumulative impact on mood and self-esteem over time and set survivors up for failure as the academic demands increase in later grades. For instance, one pre-teen survivor felt so strongly that she did not want to be different from peers that she insisted on completing all the homework that was assigned to the class. She presented with significant anxiety, stress, and low self-esteem, and due to the hours she was spending on homework, she was also socially isolated. This situation occurred despite the fact that she had a special education plan that provided homework modifications, supportive teachers, and strong parental advocacy. Her unwillingness to accept help was the barrier to success.
For CNS survivors who are young adults, the challenges around finding employment, social difficulties, and/or an inability to live independently increase the number of risk factors for psychological distress and affect survivors’ ability to meet age-appropriate developmental goals. Implications of the neurocognitive limitations on education, employment, and independent living can be significant as highlighted in a study of 1,101 adult survivors of pediatric brain tumors that reported that 26 % were unemployed, 74 % were unmarried, and 28 % had incomes of less than $20,000 per year [23]. As mentioned previously, low income and minimal social support are risk factors in the general population associated with psychological distress. There are also minimal resources available to help these young adult survivors. Many of them do not meet the eligibility criteria to attain services through state agencies, so they tend to have limited options in terms of supportive services to help ameliorate the stress associated with medical and social challenges. Resources at the end of this manuscript provide the practitioner and their patient with those support networks and systems that are available.
On top of the issues around learning and adaptation, survivors of pediatric brain tumors often experience a number of medical issues that can lead to significant limitations in meeting goals and ongoing challenges associated with psychological adaptation to chronic illness. The very real worry regarding disease recurrence or secondary malignancy risk can lead to anxiety issues that can impede a survivor’s overall functioning. In addition, as survivors get older, they are faced with additional ramifications of their disease and treatment that may not have been particularly salient at earlier developmental levels. Research has demonstrated there are numerous factors associated with treatment, tumor histology, and tumor location that can contribute to the incidence of seizures, even many years after the completion of treatment [51]. The impact of a seizure disorder can be significant for overall psychological adaptation and research in patients with seizure disorders has shown an increased risk of suicide ideation [52]. As medical and adaptive difficulties accumulate, CNS survivors can experience changes in their ability to cope and subsequent psychological problems that make survivorship all the more challenging over time.
3.2 Bone Marrow Transplant Survivors
The process of going through bone marrow transplant can be extremely stressful for patients and families. In order to understand this at-risk group, it is important to recognize the context in which survivorship has occurred. The consent process associated with bone marrow transplant is extensive and reviews the multitude of side-effects that can occur during the treatment and following the treatment. These side-effects include hearing loss, infertility, renal failure, cardiac dysfunction, growth and gonadal failure, secondary malignancies, neurocognitive delay, and possible death. Discussion of the potential risk of death is part of the consenting process and indicates the intensity of the treatment and the potential psychological trauma that can result for both patients and parents. The stress associated with finding an appropriate donor and in some cases, identifying sibling donors, makes this treatment even more challenging for the family as a whole. Moreover, once patients make it through the actual treatment, there are a number of restrictions, including social restrictions that can be in place for up to 6 months. During that time frame, patients are seen frequently for medical appointments, take multiple medications, and are not able to attend school. These patients are at-risk for a number of medical conditions, including graft-versus-host disease (GVHD), which is reviewed in Chap. 13.
Given the intensity of the treatment, the significant limitations placed on daily functioning as a result of the treatment, and the very real possibility of disease relapse despite the treatment, it is understandable that survivors of bone marrow transplant are a cohort of patients who may be at-risk for increased psychological distress. With that being said, there is literature that demonstrates that survivors of bone marrow transplant have a good health-related quality of life (HRQOL) 4–12 months post-transplant and HRQOL that is similar to population norms 6 months to 8 years post-transplant [53]. There are also studies that show that HRQOL can be significantly lower for BMT survivors when compared to healthy siblings [54]. Parental coping is understandably associated with child adjustment [55] and the literature has also noted that parental psychological adjustment to bone marrow transplant can follow a similar course to patients. Parents may experience elevations in distress during the acute phase of transplant, but the distress typically resolves approximately 4–6 months post-transplant. Families with lower socioeconomic backgrounds have been noted to be at increased risk for psychological distress [56].
While the literature is inconsistent, there are certain cohorts of patients who have received bone marrow transplants who may be at increased risk for psychological distress. Similar to the CNS survivors, BMT survivors are coping with the cumulative effect of their intensive treatment in terms of long-term medical problems. For those who are dealing with debilitating side-effects such as GVHD and its treatment, quality of life certainly can become an issue. Results from the Bone Marrow Transplant Survivor Study (BMTSS), indicated that active chronic GVHD was associated with somatic and global psychological distress. Patients treated with prednisone for the management of chronic GVHD demonstrated elevations in psychological distress across all domains [57]. The use of corticosteroids has been shown to be associated with increased rates of depression in the general population, as well as other chronically ill populations [58].
Patients impacted in ways that affect physical appearance or that severely limit physical functioning are certainly at higher risk for quality of life difficulties and psychological distress. In a study using data from both CCSS and BMTSS, survivors of bone marrow transplant were more likely than sibling controls to have severe/life threatening conditions, two or more medical conditions, functional impairment, and activity limitations. These findings were also consistent when bone marrow transplant survivors were compared to other childhood cancer survivors [59]. Ongoing medical issues, pain, fatigue, and/or physical functioning deficits are barriers to employment and meeting appropriate developmental milestones. The BMTSS showed that low annual income amongst the survivors was associated with global distress, anxiety, depression, and somatization [57].
3.3 Periods of Vulnerability
While physical and psychological adjustment often improve after completion of cancer therapy and survivors return to “normal life,” subsequent life periods and transitions can be associated with greater vulnerability to psychological distress and adaptive problems. From a developmental perspective, Erikson’s theory of adolescent development [60] provides a useful framework for understanding how each new developmental period provides opportunities for reworking unresolved issues related to cancer. As cognitive capacities increase and social relationships change, the survivors may be prompted to think about their cancer experience in new ways. For most survivors, this reworking of the cancer experience may be subtle and lead to a sense of growth, but for others there is the possibility that aspects of the cancer experience may reemerge later in life to promote maladaptation and the development of symptoms. Most survivors will pass through these vulnerable periods (summarized in Table 17.5) without excessive problems, but these are considered to be times during which survivors, including those who had a sustained period of healthy recovery and good psychosocial adjustment, are at risk for new problems with psychological adaptation.
For some survivors, the completion of therapy itself is an unexpectedly stressful time. Survivors who are greatly relieved to complete their medical regimen, may also feel some anxiety at being let loose in the world with less medical oversight, and some uncertainty at leaving the “patient role” to take up the regular expectations of school and society. In some cases, survivors and their families speak of treatment as being such a central focus of their lives that it is only after completion of all medical treatments that they really process some of the emotional components of the cancer. This may lead to an increased sense of loss or depression. If the survivor has had a long treatment period during which they interacted predominantly with adults, they may feel ill-at-ease with peers and unfamiliar with the latest trends within their peer group, and this too may increase feelings of isolation and depression. For many young cancer survivors, the experience of returning to their regular school or peer group can feel bewildering, as they move from a context where they are a focus of intense attention and concern, to being just one of the crowd. For young children, this loss of special status may present in the form of behavioral problems (e.g., defiance, tantrums, withdrawal) as they resist the reintroduction of expectations and consequences that may have been suspended during the illness. For teenagers, problems in this transition period can include feeling isolated and misunderstood (Table 17.6).
Many survivors welcome an opportunity to move to a new school or living situation where their cancer history is not widely known as they feel it helps them move past being “the kid with cancer.” For others, however, moving into a new environment means having to give up a special status they may not have recognized they had, as well as new concerns about how and when to talk about their cancer history. As one 22 year old survivor John, recalls:
“When I got to college I was just one of a sea of new students. I thought that would be great, but the work was really hard, and I started to realize I wasn’t prepared. My teachers and tutors in High School had cut me a lot of slack because of my cancer, and suddenly that help and support was all gone. Then when I tried to get to know people it seemed like cancer always came up. What sports did I play, what was that scar from—inevitably I had to keep “coming out” as a cancer survivor and that was weird. At home everyone knew me and I had never once had to tell anyone I had cancer, but in college I was on my own and some people had really weird reactions. It became a big problem for me adjusting to college and I ended up seeing a counselor first at the cancer center and then at school.”
Developing intimate and sexual relationships presents challenges for most young adults, and in addition to all these expectable challenges, some survivors will need to confront ways in which their body image, sexual function, or fertility have been affected by cancer. Even in the best of circumstances, when these issues are talked about openly as part of treatment and follow-up care, survivors who are entering into a new romantic relationship have to take new risks such as talking with their partner about their concerns, or possibly seeking medical consultation about sexual function or fertility. Other major life changes can also prompt some new reflection about their health and questions of whether their cancer history can be a liability. For example, taking on a major new job role, or becoming a parent can be a time that survivors find themselves worrying or reflecting on their health. As one survivor put it:
“I never really thought much about my cancer, but when I got pregnant it all came up. For 20 years the fear that I might get sick again was way in the back of my head, and I did not even know it. Once I found out I was going to be a mom, it all came up and I kind of freaked out. I had to educate myself, see my doctors, and make sure I was really healthy and taking care of myself.”
Not surprisingly, new or ongoing medical concerns are a common source of stress for cancer survivors. Close medical follow-up is recommended for most survivors many years after their treatment; these visits, tests and waiting for results can be a source of significant anxiety as well as a catalyst to recalling their cancer treatments or triggering new health anxieties. The impact of some symptoms or limitations may not be fully experienced in the immediacy of the end of treatment, but become more of a problem in the context of later development. For example, a young boy who was happy to be excused from gym in middle school may feel frustrated that he can’t participate in team sports in high school, or angry and depressed in college to learn that a manageable medical condition may affect his ability to apply for certain jobs or special training in the armed forces. Because of their intensive medical treatments, childhood cancer survivors are at increased risk for the development of a variety of medical late-effects [28], and any new health problem may be a source of significant anxiety and distress. New physical symptoms, exams to work up suspicious findings, or a new diagnosis may be significant triggers that can spike preoccupation with symptoms, anxiety, fear of cancer recurrence, and sadness. Survivors with new medical complications may need additional education, reassurance, and support from medical providers to understand their new condition and its implications for their health. If the condition is serious, debilitating, or life threatening, such as a diagnosis of a new cancer, survivors may need more intensive support such as a referral for support groups or professional counseling. In addition to personal health problems, learning of a peer’s recurrence or even the diagnosis or death of a celebrity due to cancer can have a significant impact, potentially jarring an individual survivor from an otherwise healthy adjustment into a period of psychological distress (Table 17.7).
4 Identifying Survivors with Adjustment Problems
Given the various kinds of adaptive problems and psychosocial distress that cancer survivors can experience, we advocate efforts to monitor their psychological adjustment in a variety of settings, including oncology and general medical practice care as well as in educational and supportive care programs. Cancer survivors are often interested in talking about these issues, but often wait for professionals to raise them or signal an interest in hearing about them [61–63]. While the specific methods for inquiring about survivors’ emotional health will vary across settings and survivor populations, basic evaluation of adjustment can be integrated into a variety of programs and services aimed at childhood cancer survivors. With knowledge of the common medical and psychological challenges childhood cancer survivors may face, and openness to learning about their experiences, those working with survivors can be prepared to talk with them about their adjustment and quality-of-life. Using this information, simple, direct questions around the potential areas of distress, like those in Table 17.8, can be integrated into an assessment or evaluation. This approach is not intended as a comprehensive assessment of survivors’ emotional health, but rather as a way to “start the conversation” and begin an ongoing dialogue with survivors about their evolving adjustment.
Programs or medical settings that already use some written self-report checklist or medical history forms as part of their intake procedures may also want to include items addressing emotional health, economic, social, and functional status in the assessment forms completed by survivors. Self-report assessment has the advantage of being simple to incorporate into each visit and presenting relatively little burden to providers and survivors. It also insures that these topics are addressed, and “primes” survivors and professionals to discuss these issues. At a minimum, these items would include 6–10 questions about general emotional functioning, including depressed mood, anxiety, feelings of hopelessness and suicidality, as well as other symptoms or functional limitations. Self-report rating scales that have been previously validated can also be important tools for screening cancer survivors. In settings where they are appropriate, such as in survivorship clinics, they may be included as part of an assessment of psychological functioning. Validated rating scales have the advantage of being standardized so that information can be compared to some normative data that facilitates interpretation and comparison with the general population. However selection of an appropriate measure, as well as scoring and interpretation, often require expertise in implementing this kind of mental health screening in a clinical environment. For example, reliability and validity of tests will vary in different populations, and several studies have indicated that previously validated tests may operate differently or require different cut-off scores to be used in cancer patients or survivors [64–66].
Whenever written assessment is used, reviewing responses and discussing them directly with the survivor is essential. By way of introduction, a provider may simply ask, “When you completed the questions about mood and emotional functioning, did any of those questions seem to apply to you?” The provider can then quickly scan the responses to the self-report items and inquire about any that were endorsed. Assuming that no significant emotional issues were raised, a final question, such as, “Is there anything else about how you are feeling emotionally, getting along at home or at work that we should talk about?” may help to encourage reticent survivors to bring up any other emotional concerns, or to close the topic and provide a segue to the next area for discussion.
Ongoing monitoring of psychosocial adjustment can be helpful to all survivors, and should be incorporated into routine survivor care, both as a means of identifying survivors in need, and of communicating to survivors that their psychosocial well-being is important and will be attended to if they begin to experience difficulties at a later date. Because survivors’ adjustment can change over the course of development, it is important that this kind of assessment be ongoing and available to survivors across the survivorship trajectory.
Depending on the survivor population, between 10 % and 30 % of survivors can be expected to indicate they are experiencing some adjustment problems or emotional health concerns, and they will require further assessment and/or referral to a mental health or medical professional. In talking with survivors about their symptoms, it is important to acknowledge that everyone experiences normal variation in mood, especially during adolescence. Since medical visits can be a source of anxiety, it is important that providers distinguish between anxiety related to a follow-up visit versus anxiety that is more lasting and potentially impairing a survivor’s functioning. Assessment should focus on symptoms that are lasting and cause distress or impaired functioning. Because of their risk of medical late-effects, evaluation of depression, anxiety, and other psychological symptoms in childhood cancer survivors should include an investigation of medical conditions or medications that may be contributing. Cancer treatments may have medical late-effects affecting hormonal, cardiac, pulmonary, and neurological functioning, and effects of these systems may be associated with psychological symptoms. Similarly, many commonly prescribed medications may cause symptoms of depression or anxiety, and a careful medication history may reveal possible associations with medications. For some survivors who experience minor adjustment problems, reassurance that their experience is normal may be sufficient to help maintain psychological well-being. Recommendations for self-care, education, and support strategies may also be beneficial. For those indicating more distress formal referral to mental health professionals for further evaluation and treatment is warranted, as described elsewhere in this manuscript.
5 Conclusions
As discussed in this chapter, the majority of childhood cancer survivors will have successful psychosocial adaptation after treatment of childhood cancer. However, there are many factors that affect adaptation to the myriad challenges survivors often face years after treatment has ended. The risk factors that have been identified include lower income, lower education level, disability status and marital status, as is being of female gender. Health status is also a major variable, and individuals who experienced more intensive chemotherapy during treatment, who have long-term physical health issues, multiple medical problems, and pain, and were treated for CNS cancers, are more susceptible to experiencing difficulties successfully adapting to life’s transitions. Given these risk factors, providers should be mindful that the long-term follow-up of childhood cancer survivors extends beyond medical needs and includes identifying and responding to psychosocial needs and vulnerabilities.
References
Sawyer, M., Antoniou, G., Toogood, I., Rice, M., & Baghurst, P. (2000). Childhood cancer: A 4-year prospective study of the psychological adjustment of children and parents. Journal of Pediatric Hematology/Oncology, 22(3), 214–220.
Patenaude, A. F., & Kupst, M. J. (2005). Psychosocial functioning in pediatric cancer. Journal of Pediatric Psychology, 30(1), 9–27.
Zeltzer, L. K., Recklitis, C., Buchbinder, D., Zebrack, B., Casillas, J., Tsao, J. C., et al. (2009). Psychological status in childhood cancer survivors: A report from the childhood cancer survivor study. Journal of Clinical Oncology, 27, 2396–2404.
Hudson, M. M., Mertens, A. C., Yasui, Y., Hobbie, W., Chen, H., Gurney, J. G., et al. (2003). Health status of adult long-term survivors of childhood cancer: A report from the childhood cancer survivor study. Journal of American Medical Association, 290(12), 1583–1592.
Michel, G., Rebholz, C. E., von der Weid, N. X., Bergstraesser, E., & Kuehni, C. E. (2010). Psychological distress in adult survivors of childhood cancer: The Swiss childhood cancer survivor study. Journal of Clinical Oncology, 28(10), 1740–1748.
Hawkins, M. M., Lancashire, E. R., Winter, D. L., Frobisher, C., Reulen, R. C., Taylor, A. J., et al. (2008). The British childhood cancer survivor study: Objectives, methods, population structure, response rates and initial descriptive information. Pediatric Blood & Cancer, 50(5), 1018–1025. doi:10.1002/pbc.21335.
Robison, L. L., Mertens, A. C., Boice, J. D., Breslow, N. E., Donaldson, S. S., Green, D. M., et al. (2002). Study design and cohort characteristics of the childhood cancer survivor study: A multi-institutional collaborative project. Medical and Pediatric Oncology, 38(4), 229–239.
Recklitis, C. J., Diller, L. R., Li, X., Najita, J., Robison, L. L., & Zeltzer, L. (2010). Suicide ideation in adult survivors of childhood cancer: A report from the childhood cancer survivor study. Journal of Clinical Oncology, 28(4), 655–661.
Stuber, M. L., Meeske, K. A., Krull, K. R., Leisenring, W., Stratton, K., Kazak, A. E., et al. (2010). Prevalence and predictors of posttraumatic stress disorder in adult survivors of childhood cancer. Pediatrics, 125(5), e1124–e1134.
Barakat, L. P., Alderfer, M. A., & Kazak, A. E. (2006). Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers. Journal of Pediatric Psychology, 31(4), 413–419.
Lee, Y. L., Gau, B. S., Hsu, W. M., & Chang, H. H. (2009). A model linking uncertainty, post-traumatic stress, and health behaviors in childhood cancer survivors. Oncology Nursing Forum, 36(1), E20–E30. doi:10.1188/09.ONF. E20-E30.
NCCN. (2003). Distress management clinical practice guidelines. Journal of the National Comprehensive Cancer Network, 1, 344–374.
Holland, J., Andersen, B., Breitbart, W. S., Dabrowski, M., Dudley, M. M., Fleishman, S., et al. (2007). Distress management. Journal of the National Comprehensive Cancer Network, 5(1), 66–98.
Holland, J., Andersen, B., Breitbart, W., Compas, B., Dudley, M., Fleishman, S., et al. (2010). Distress management. Journal of the National Comprehensive Cancer Network, 8(4), 448–485.
Kornblith, A. (1998). Psychosocial adaptation of cancer survivors. In J. C. Holland (Ed.), Psycho-oncology (pp. 223–254). New York: Oxford University Press.
Jacobsen, P. (2007). Screening for pscyhological distress in cancer patients: Challenges and opportunities. Journal of Clinical Oncology, 25(29), 4526–4527.
Hays, R. D., Anderson, R., & Revicki, D. (1993). Psychometric considerations in evaluating health-related quality of life measures. Quality of Life Research, 2(6), 441–449.
Health-Related Quality of Life and Well-Being. (2010). Retrieved from http://healthypeople.gov/2020/about/QoLWBabout.aspx.
Zeltzer, L. K., Lu, Q., Leisenring, W., Tsao, J. C., Recklitis, C., Armstrong, G., et al. (2008). Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: A report from the childhood cancer survivor study. Cancer Epidemiology, Biomarkers & Prevention, 17(2), 435–446.
Reulen, R. C., Winter, D. L., Lancashire, E. R., Zeegers, M. P., Jenney, M. E., Walters, S. J., et al. (2007). Health-status of adult survivors of childhood cancer: A large-scale population-based study from the British childhood cancer survivor study. International Journal of Cancer, 121(3), 633–634.
Maunsell, E., Pogany, L., Barrera, M., Shaw, A. K., & Speechley, K. N. (2006). Quality of life among long-term adolescent and adult survivors of childhood cancer. Journal of Clinical Oncology, 24(16), 2527–2535.
Maurice-Stam, H., Grootenhuis, M. A., Caron, H. N., & Last, B. F. (2007). Course of life of survivors of childhood cancer is related to quality of life in young adulthood. Journal of Psychosocial Oncology, 25(3), 43–58. doi:10.1300/J077v25n03_03.
Gurney, J. G., Krull, K. R., Kadan-Lottick, N., Nicholson, H. S., Nathan, P. C., Zebrack, B., et al. (2009). Social outcomes in the childhood cancer survivor study cohort. Journal of Clinical Oncology, 27(14), 2390–2395.
Barrera, M., Shaw, A. K., Speechley, K. N., Maunsell, E., & Pogany, L. (2005). Educational and social late effects of childhood cancer and related clinical, personal, and familial characteristics. Cancer, 104, 1751–1760.
Pang, J. W., Friedman, D. L., Whitton, J. A., Stovall, M., Mertens, A. C., Robison, L. L., et al. (2008). Employment status among adult survivors in the childhood cancer survivor study. Pediatric Blood & Cancer, 50(1), 104–110.
Kirchhoff, A. C., Krull, K. R., Ness, K. K., Armstrong, G. T., Park, E. R., Stovall, M., et al. (2011). Physical, mental, and neurocognitive status and employment outcomes in the childhood cancer survivor study cohort. Cancer Epidemiology, Biomarkers & Prevention, 20(9), 1838–1849. doi:10.1158/1055-9965.EPI-11-0239.
Kirchhoff, A. C., Leisenring, W., Krull, K. R., Ness, K. K., Friedman, D. L., Armstrong, G. T., et al. (2010). Unemployment among adult survivors of childhood cancer: A report from the childhood cancer survivor study. Medical Care, 48(11), 1015–1025. doi:10.1097/MLR.0b013e3181eaf880.
Oeffinger, K. C., Mertens, A. C., Sklar, C. A., Kawashima, T., Hudson, M. M., Meadows, A. T., et al. (2006). Chronic health conditions in adult survivors of childhood cancer. The New England Journal of Medicine, 355(15), 1572–1582.
Park, E. R., Li, F. P., Liu, Y., Emmons, K. M., Ablin, A., Robison, L. L., et al. (2005). Health insurance coverage in survivors of childhood cancer: The childhood cancer survivor study. Journal of Clinical Oncology, 23(36), 9187–9197.
Pastore, G., Mosso, M. L., Magnani, C., Luzzatto, L., Bianchi, M., & Terracini, B. (2001). Physical impairment and social life goals among adult long-term survivors of childhood cancer: A population-based study from the childhood cancer registry of Piedmont, Italy. Tumori, 87(6), 372–378.
Frobisher, C., Lancashire, E. R., Winter, D. L., Jenkinson, H. C., & Hawkins, M. M. (2007). Long-term population-based marriage rates among adult survivors of childhood cancer in Britain. International Journal of Cancer, 121(4), 846–855.
Janson, C., Leisenring, W., Cox, C., Termuhlen, A. M., Mertens, A. C., Whitton, J. A., et al. (2009). Predictors of marriage and divorce in adult survivors of childhood cancers: A report from the childhood cancer survivor study. Cancer Epidemiology, Biomarkers & Prevention, 18(10), 2626–2635.
Kunin-Batson, A., Kadan-Lottick, N., Zhu, L., Cox, C., Bordes-Edgar, V., Srivastava, D. K., et al. (2011). Predictors of independent living status in adult survivors of childhood cancer: A report from the childhood cancer survivor study. Pediatric Blood & Cancer, 57(7), 1197–1203. doi:10.1002/pbc.22982.
Ness, K. K., Mertens, A. C., Hudson, M. M., Wall, M. M., Leisenring, W. M., Oeffinger, K. C., et al. (2005). Limitations on physical performance and daily activities among long-term survivors of childhood cancer. Annals of Internal Medicine, 143(9), 639–647.
Frobisher, C., Lancashire, E. R., Winter, D. L., Taylor, A. J., Reulen, R. C., & Hawkins, M. M. (2010). Long-term population-based divorce rates among adult survivors of childhood cancer in Britain. Pediatric Blood & Cancer, 54(1), 116–122. doi:10.1002/pbc.22290.
van Dijk, E. M., van Dulmen-den, B. E., Kaspers, G. J., van Dam, E. W., Braam, K. I., & Huisman, J. (2008). Psychosexual functioning of childhood cancer survivors. Psychooncology, 17(5), 506–511. doi:10.1002/pon.1274.
McLean, C. P., & Anderson, E. R. (2009). Brave men and timid women? A review of the gender differences in fear and anxiety. Clinical Psychology Review, 29(6), 496–505. doi:10.1016/j.cpr.2009.05.003.
Piccinelli, M., & Wilkinson, G. (2000). Gender differences in depression. Critical review. The British Journal of Psychiatry, 177, 486–492.
Johnson, J. G., Cohen, P., Dohrenwend, B. P., Link, B. G., & Brook, J. S. (1999). A longitudinal investigation of social causation and social selection processes involved in the association between socioeconomic status and psychiatric disorders. Journal of Abnormal Psychology, 108(3), 490–499.
Ness, K. K., Gurney, J. G., Zeltzer, L. K., Leisenring, W., Mulrooney, D. A., Nathan, P. C., et al. (2008). The impact of limitations in physical, executive, and emotional function on health-related quality of life among adult survivors of childhood cancer: A report from the childhood cancer survivor study. Archives of Physical Medicine and Rehabilitation, 89(1), 128–136.
Speechley, K. N., Barrera, M., Shaw, A. K., Morrison, H. I., & Maunsell, E. (2006). Health-related quality of life among child and adolescent survivors of childhood cancer. Journal of Clinical Oncology, 24(16), 2536–2543.
Zebrack, B. J., Zeltzer, L. K., Whitton, J., Mertens, A. C., Odom, L., Berkow, R., et al. (2002). Psychological outcomes in long-term survivors of childhood leukemia, Hodgkin’s disease, and non-Hodgkin’s lymphoma: A report from the childhood cancer survivor study. Pediatrics, 110(1 Pt 1), 42–52.
Schultz, K. A., Ness, K. K., Whitton, J., Recklitis, C., Zebrack, B., Robison, L. L., et al. (2007). Behavioral and social outcomes in adolescent survivors of childhood cancer: A report from the childhood cancer survivor study. Journal of Clinical Oncology, 25(24), 3649–3656.
Casey, R., Zwemer, E., & Recklitis, C. Is survivor identity associated with physical and behavioral health? Results from Project REACH. Presented at 5th Biennial Cancer Survivorship Research Conference. Washington, DC, 2010.
Zebrack, B. J., Gurney, J. G., Oeffinger, K., Whitton, J., Packer, R. J., Mertens, A., et al. (2004). Psychological outcomes in long-term survivors of childhood brain cancer: A report from the childhood cancer survivor study. Journal of Clinical Oncology, 22(6), 999–1006.
Rutka, J. T., & Kuo, J. S. (2004). Pediatric surgical neuro-oncology: Current best care practices and strategies. Journal of Neuro-Oncology, 69(1–3), 139–150.
Ris, M. D., & Beebe, D. W. (2008). Neurodevelopmental outcomes of children with low-grade gliomas. Developmental Disabilities Research Reviews, 14(3), 196–202.
Turner, C. D., Chordas, C. A., Liptak, C. C., Rey-Casserly, C., Delaney, B. L., Ullrich, N. J., et al. (2009). Medical, psychological, cognitive and educational late-effects in pediatric low-grade glioma survivors treated with surgery only. Pediatric Blood & Cancer, 53(3), 417–423.
Poretti, A., Grotzer, M. A., Ribi, K., Schonle, E., & Boltshauser, E. (2004). Outcome of craniopharyngioma in children: Long-term complications and quality of life. Developmental Medicine and Child Neurology, 46(4), 220–229.
Langeveld, N. E., Ubbink, M. C., Last, B. F., Grootenhuis, M. A., Voute, P. A., & De Haan, R. J. (2003). Educational achievement, employment and living situation in long-term young adult survivors of childhood cancer in the Netherlands. Psychooncology, 12(3), 213–225.
Ullrich, N. J., Pomeroy, S. L., & Loddenkemper, T. (2009). Incidence and outcome of seizures in long-term survivors of pediatric brain tumors. Epilepsia, 50(11), 213–214.
Tellez-Zenteno, J. F., Patten, S. B., Jette, N., Williams, J., & Wiebe, S. (2007). Psychiatric comorbidity in epilepsy: A population-based analysis. Epilepsia, 48(12), 2336–2344. doi:10.1111/j.1528-1167.2007.01222.x.
Clarke, S. A., Eiser, C., & Skinner, R. (2008). Health-related quality of life in survivors of BMT for paediatric malignancy: A systematic review of the literature. Bone Marrow Transplantation, 42(2), 73–82.
Barrera, M., & Atenafu, E. (2008). Cognitive, educational, psychosocial adjustment and quality of life of children who survive hematopoietic SCT and their siblings. Bone Marrow Transplantation, 42(1), 15–21.
Jobe-Shields, L., Alderfer, M. A., Barrera, M., Vannatta, K., Currier, J. M., & Phipps, S. (2009). Parental depression and family environment predict distress in children before stem cell transplantation. Journal of Developmental and Behavioral Pediatrics, 30(2), 140–146. doi:10.1097/DBP.0b013e3181976a59.
Phipps, S., Dunavant, M., Lensing, S., & Rai, S. N. (2004). Patterns of distress in parents of children undergoing stem cell transplantation. Pediatric Blood & Cancer, 43(3), 267–274. doi:10.1002/pbc.20101.
Sun, C. L., Francisco, L., Baker, K. S., Weisdorf, D. J., Forman, S. J., & Bhatia, S. (2011). Adverse psychological outcomes in long-term survivors of hematopoietic cell transplantation: A report from the bone marrow transplant survivor study (BMTSS). Blood, 118(17), 4723–4731. doi:10.1182/blood-2011-04-348730.
Gift, A. G., Wood, R. M., & Cahill, C. A. (1989). Depression, somatization and steroid use in chronic obstructive pulmonary disease. International Journal of Nursing Studies, 26(3), 281–286.
Armenian, S. H., Sun, C. L., Kawashima, T., Arora, M., Leisenring, W., Sklar, C. A., et al. (2011). Long-term health-related outcomes in survivors of childhood cancer treated with HSCT versus conventional therapy: A report from the bone marrow transplant survivor study (BMTSS) and childhood cancer survivor study (CCSS). Blood, 118(5), 1413–1420.
Erikson, E. H. (1968). Identity: Youth and crisis. Oxford: Norton & Co.
LAF. (2004). LIVESTRONG poll finds nearly half of people living with cancer feel their non-medical needs are unmet by their healthcare system. Retrieved July 14, 2005, from http://www.livestrong.org.
Detmar, S. B., Aaronson, N. K., Wever, L. D., Muller, M., & Schornagel, J. H. (2000). How are you feeling? Who wants to know? Patients’ and oncologists’ preferences for discussing health-related quality-of-life issues. Journal of Clinical Oncology, 18(18), 3295–3301.
Greenberg, D. B. (2004). Barriers to the treatment of depression in cancer patients. Journal of the National Cancer Institute Monographs, 32, 127–135.
Johnson, L. C., Murphy, S. A., & Dimond, M. (1996). Reliability, construct validity, and subscale norms of the Brief Symptom Inventory when administered to bereaved parents. Journal of Nursing Measurement, 4(2), 117–127.
Zabora, J., Brintzenhofeszoc, K., Jacobsen, P., Curbow, B., Piantadosi, S., Hooker, C., et al. (2001). A new psychosocial screening instrument for use with cancer patients. Psychosomatics, 42(3), 241–246.
Recklitis, C. J., & Rodriguez, P. (2007). Screening childhood cancer survivors with the brief symptom inventory-18: Classification agreement with the symptom checklist-90-revised. Psychooncology, 16(5), 429–436. doi:10.1002/pon.1069.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2015 Springer New York
About this chapter
Cite this chapter
Recklitis, C.J., Liptak, C. (2015). Psychological Challenges and Adaptation in Long-Term Survivors of Childhood Cancer. In: Mucci, G., Torno, L. (eds) Handbook of Long Term Care of The Childhood Cancer Survivor. Specialty Topics in Pediatric Neuropsychology. Springer, Boston, MA. https://doi.org/10.1007/978-1-4899-7584-3_17
Download citation
DOI: https://doi.org/10.1007/978-1-4899-7584-3_17
Publisher Name: Springer, Boston, MA
Print ISBN: 978-1-4899-7583-6
Online ISBN: 978-1-4899-7584-3
eBook Packages: Behavioral ScienceBehavioral Science and Psychology (R0)