Psychological quality of life (QOL), health-related QOL (HRQOL), and life satisfaction outcomes and their associated risk factors are reviewed for the large cohort of survivors and siblings in the Childhood Cancer Survivor Study (CCSS). This review includes previously published manuscripts that used CCSS data focused on psychological outcome measures, including the Brief Symptom Inventory (BSI-18), the Medical Outcomes Survey Short Form-36 (SF-36), the Cantril Ladder of Life, and other self-report questionnaires. Comparisons and contrasts are made between siblings and survivors, and to normative data when available, in light of demographic/health information and abstracted data from the medical record. These studies demonstrate that a significant proportion of survivors report more symptoms of global distress and poorer physical, but not emotional, domains of HRQOL. Other than brain tumor survivors, most survivors report both good present and expected future life satisfaction. Risk factors for psychological distress and poor HRQOL are female sex, lower educational attainment, unmarried status, annual household income less than $20,000, unemployment, lack of health insurance, presence of a major medical condition, and treatment with cranial radiation and/or surgery. Cranial irradiation impacted neurocognitive outcomes, especially in brain tumor survivors. Psychological distress also predicted poor health behaviors, including smoking, alcohol use, fatigue, and altered sleep. Psychological distress and pain predicted use of complementary and alternative medicine. Overall, most survivors are psychologically healthy and report satisfaction with their lives. However, certain groups of childhood cancer survivors are at high risk for psychological distress, neurocognitive dysfunction, and poor HRQOL, especially in physical domains. These findings suggest targeting interventions for groups at highest risk for adverse outcomes and examining the positive growth that remains despite the trauma of childhood cancer.
To collect symptom data longitudinally from children with recurrent abdominal pain (RAP) and Control (asymptomatic) children.
Children with RAP (n = 77) and Controls (n = 33) ages 7–10 yrs. completed daily diaries for two weeks tracking pain frequency and severity, how often the pain interfered with activities, and stooling pattern.
RAP children reported a greater number of pain episodes and greater pain severity than Control children. Pain commonly was reported to be in the periumbilical area and occurred evenly across the day in both groups. However, the pain interfered with activity more often in the RAP group. There was a positive relation between pain and interference with activities. Both groups reported stool changes but there were no differences between groups in stool character (e.g., hard, mushy, etc.). For both groups the presence of watery stool was related positively to pain. Of children with RAP, 65% could be categorized as having irritable bowel syndrome (IBS) whereas 35% were classifiable as having functional abdominal pain (FAP) according to the pediatric Rome II criteria.
To our knowledge this is the first longitudinal report of symptoms in children with RAP compared with Controls. These data demonstrate that there is considerable overlap between children with RAP and Control children on a number of items commonly obtained in the history (e.g., pain location, timing, and stooling pattern). A majority of children with RAP could be characterized as having IBS. The relationship between pain reports and interference with activities substantiates the need to deal specifically with the abdominal pain to decrease disability. The relationship between pain and watery stools requires further study.
Recurrent abdominal pain; diary; pain; stool pattern; irritable bowel syndrome; functional abdominal pain
This study describes alcohol consumption among adult survivors of pediatric cancer compared to sibling controls and a national sample of healthy peers. Risk factors for heavy drinking among survivors are described.
Design, Setting and Participants
Cross-sectional data were utilized from the Childhood Cancer Survivor Study including adult survivors of pediatric cancer (N=10,398), and a sibling cohort (n=3,034). Comparison data were drawn from the National Alcohol Survey (n=4,774).
Alcohol consumption, demographic, cancer diagnosis, treatment and psychosocial factors were measured.
Compared to peers, survivors were slightly less likely to be risky (ORadj=0.9; CI 0.8-1.0) and heavy drinkers (ORadj=0.8; CI 0.7-0.9) and more likely to be current drinkers. Compared to siblings, survivors were less likely to be current, risky and heavy drinkers. Risk factors for survivors’ heavy drinking included being age 18-21 (ORadj=2.0; 95% CI 1.5-2.6), male (ORadj=2.1; 95% CI 1.8-2.6), having high school education or less (ORadj=3.4; 95% CI 2.7-4.4), and drinking initiation before age 14 (ORadj=6.9; 95% CI 4.4-10.8). Among survivors, symptoms of depression, anxiety, or somatization, activity limitations and anxiety about cancer were associated with heavy drinking. Cognitively compromising treatment, brain tumors and older age at diagnosis were protective.
Adult survivors of childhood cancer show only a modest reduction in alcohol consumption compared to peers despite their more vulnerable health status. Distress and poorer health are associated with survivor heavy drinking. Screening for alcohol consumption should be instituted in long-term follow-up care and interventions among survivors and siblings should be established to reduce risk for early drinking.
childhood cancer survivor; alcohol consumption; late-effects; risky drinking; long-term follow-up care
Chronic or recurrent pain is a widespread health issue that affects a large proportion of the population, including adults and children. Family factors in the development of pain have received increasing attention of late as research has shown that pain tends to run in families, A burgeoning literature has also demonstrated the influence of parental factors in children’s responses to chronic and laboratory pain. This review attempts to integrate: first,) the literature documenting an association between parent and child pain both within the clinical chronic pain and laboratory pain literatures; and second,) research accounting for likely mechanisms explaining the parent-child pain association. To this end, we present a conceptual model that incorporates a number of parent and child specific characteristics, such as parental responses, coping and gender role socialization as well as broader socio-demographic factors such as parent and child age and sex, family functioning, socioeconomic status, and race/ethnicity. It is anticipated that consideration of such variables will lead to needed research exploring the mechanisms of parent-child pain relationships, and to interventions designed to prevent and ameliorate child pain sensitivity when it correlates with poor adaptation to pain.
children; pain; family; parents
This paper uses a mixed-methods approach to examine the impact of pain-associated functioning limitations on children's lives and the strategies they develop to try to continue functioning. Forty-five children ages 10-18 completed standardized questionnaires and participated in semistructured interviews prior to intake at a university-based tertiary clinic specializing in the treatment of pediatric chronic pain. All the children reported that pain limited their functioning in everyday activities and that these limitations caused them frustration and distress. Qualitative analysis identified three distinct functioning patterns or groups, which were designated as Adaptive, Passive, and Stressed. The groups did not differ significantly in demographics or clinical pain characteristics. Adaptive children continued to participate in many activities and were more likely to realize that focusing on pain would heighten their perception of pain. Children in this group reported more effective use of distraction and of other independently developed strategies to continue functioning. Passive children had given up most activities, tended to use passive distraction when in pain, and were more likely to feel isolated and different from peers. Stressed children described themselves as continuing to function, but were highly focused on their pain and the difficulties of living with it. The qualitative groupings were supported by quantitative findings that Stressed children reported a higher degree of social anxiety than did Passive children and were more likely than the other groups to report experiencing pain throughout the day. Finally, Adaptive children were rated by their parents as having better overall health compared to Passive children.
children; chronic pain; functioning; United States
Previous research has established links between parent and child pain. However, little is known about sex-specific parent-child pain relationships in a nonclinical population. A sample of 186 children aged eight to 18 years (49% female) provided information on maternal and self bodily pain, assessed by asking children about the presence and location of bodily pain experienced. Children also completed three laboratory pain tasks and reported on cold pressor pain intensity, pressure pain intensity and heat pain intensity. The presence of child-reported maternal pain was consistently correlated with daughters’ bodily and laboratory pain, but not with sons’ pain in bivariate analyses. Multivariate analyses controlling for child age and maternal psychological distress indicated that children of mothers with bodily pain reported more total bodily pain sites as well as greater pressure and cold pain intensity, relative to children of mothers without bodily pain. For cold pain intensity, these results differed for boys versus girls, in that daughters reporting maternal pain evidenced significantly higher cold pain intensity compared with daughters not reporting maternal pain. No such differences were found for boys. The findings suggest that children’s perceptions of maternal pain may play a role in influencing children’s own experience of pain, and that maternal pain models may affect boys and girls differently.
Children; Pain; Sex differences; Social learning
Previous research has established links between parent and child pain. Yet little is known about sex-specific parent-child pain relationships in a non-clinical population. A sample of 186 children aged 8–18 years (49% female) provided information on maternal and self bodily-pain, assessed by asking children about the presence and location of bodily pain experienced. Children also completed three laboratory pain tasks and reported on cold pressor pain intensity, pressure pain intensity and heat pain intensity. The presence of child-reported maternal pain was consistently correlated with daughters’ bodily and laboratory pain, but not with sons’ pain in bivariate analyses. Multivariate analyses controlling for child age and maternal psychological distress indicated that children of mothers with bodily pain reported more total bodily pain sites as well as greater pressure and cold pain intensity, relative to children of mothers without bodily pain. For cold pain intensity, these results differed for boys vs. girls, in that daughters reporting maternal pain evidenced significantly higher cold pain intensity compared to daughters not reporting maternal pain. No such differences were found for boys. The findings suggest that children’s perceptions of maternal pain may play a role in influencing children’s own experience of pain and that maternal pain models may affect boys and girls differently.
pain; sex differences; social learning; children
There is increasing concern regarding the number of painful medical procedures that infants must undergo and the potential risks of alleviating infant pain with conventional pharmacologic agents. This article is Part I of a two-part series that aims to provide an overview of the literature on complementary and alternative (CAM) approaches for pain and distress related to medical procedures among infants up to six weeks of age. The focus of this article is a review of the empirical literature on sucrose with or without non-nutritive sucking (NNS) for procedural pain in infancy. Computerized databases were searched for relevant studies including prior reviews and primary trials. The most robust evidence was found for the analgesic effects of sucrose with or without NNS on minor procedural pain in healthy full-term infants. Despite some methodological weaknesses, the literature to date supports the use of sucrose, NNS and other sweetened solutions for the management of procedural pain in infancy.
infant; neonate; nonnutritive sucking; procedural pain; sucrose
This article is the second in a two-part series reviewing the empirical evidence for complementary and alternative medicine (CAM) approaches for the management of pain related to medical procedures in infants up to 6 weeks of age. Part I of this series investigated the effects of sucrose with or without non-nutritive sucking (NNS). The present article examines other CAM interventions for procedural pain including music-based interventions, olfactory stimulation, kangaroo care and swaddling. Computerized databases were searched for relevant studies including prior reviews and primary trials. Preliminary support was revealed for the analgesic effects of the CAM modalities reviewed. However, the overall quality of the evidence for these approaches remains relatively weak. Additional well-designed trials incorporating rigorous methodology are required. Such investigations will assist in the development of evidence-based guidelines on the use of CAM interventions either alone or in concert with conventional approaches to provide safe, reliable analgesia for infant procedural pain.
Anxiety sensitivity (AS), or the fear of anxiety sensations has been shown to independently predict poorer health-related quality of life (HRQOL) in adults with chronic pain. Specifically, AS was found to contribute to decrements in psychological well-being and social functioning but not to decrements in physical functioning. Existing studies have not examined the relationship between AS and HRQOL in children with chronic pain. The present study used multivariate regression analysis to test the association between AS and self-reported HRQOL in 87 children (62 girls; mean age = 14.4 years ± 2.3) presenting for treatment at a tertiary, multidisciplinary clinic specializing in pediatric chronic pain. After controlling for key sociodemographic and pain-related characteristics, higher AS was associated with poorer perceived general and mental health, greater impairment in family activities, lower self-esteem, increased behavior problems, and more social/academic limitations due to emotional problems. AS accounted for 4% – 28% of incremental variance in these HRQOL domains above and beyond the demographic and pain-related variables. However, AS was not significantly associated with physical functioning or with academic/social limitations due to physical health. Additional research is required to delineate possible mechanisms by which AS may influence certain aspects of children's HRQOL but not others.
The present findings support the evaluation of AS in pediatric chronic pain patients as part of a comprehensive assessment battery. The links between AS and multiple HRQOL domains suggests that treatment components aimed at reducing AS may lead to enhanced psychosocial well-being in children with chronic pain.
health-related quality of life; anxiety sensitivity; children; chronic pain; pain-related anxiety; functional impairment
Despite frequent targeting of health beliefs in pediatric chronic pain treatment interventions, there are currently no reliable and valid self-efficacy measures for children with chronic pain and their parents. The current study examined the psychometric properties of parent and child versions of a self-efficacy measure related to the child functioning normally when in pain. Pediatric pain patients, 9–18 years of age, and a caregiver completed questionnaires before an initial tertiary care clinic appointment. The 67 patients in our sample had an average of 1.7 pain locations, including abdominal pain (43.3%), headaches (50.7%), body pain (25.4%), back pain (23.9%), limb pain (20.9%), and/or chest pain (9.0%). Reliability for the new measures was excellent; the Cronbach's alpha was .89 for the 7 child items and .90 for the 7 parent items. Strong evidence for construct validity was also obtained as 23 of the 27 hypothesized correlations were confirmed. As predicted, parent and child ratings of increased self-efficacy for the child functioning normally when in pain were significantly correlated with each other, and to parent reports of fewer problems functioning due to physical or emotional problems; parent reports of fewer somatic, behavioral or emotional symptoms; parent reports of increased self-esteem, and unrelated to child pain, age and gender. Additionally, child ratings of increased self-efficacy were significantly correlated with child reports of increased self-esteem and fewer somatic symptoms. Replication with a larger sample size, more complex modeling, and prospective studies are indicated.
Pediatric chronic pain; Self-efficacy; Health belief measures
To examine relationships among trait anxiety sensitivity, state task-specific anticipatory anxiety, and laboratory pain responses in healthy children and adolescents.
Participants (N=118, 49.2% female, ages 8-18 years) completed a measure of anxiety sensitivity and rated anticipatory anxiety prior to undergoing thermal, pressure, and cold pain tasks. Linear and logistic regressions were used to test the hypothesis that anxiety sensitivity and anticipatory anxiety would predict incremental variance in pain response after controlling for sex, age, and anxious symptoms.
Anticipatory anxiety accounted for 35-38% of unique variance in pain report across tasks, and 10% of unique variance in thermal tolerance. Anxiety sensitivity was unrelated to pain responses.
Task-specific anxiety is an important predictor of pain report and, in certain cases, pain tolerance. Interventions designed to reduce task-specific anticipatory anxiety may help reduce pain responses in children and adolescents.
laboratory pain; anxiety; anxiety sensitivity; children; adolescents
Existing laboratory-based research in adult samples has suggested that anxiety sensitivity (AS) increases an individual’s propensity to experience pain-related anxiety which in turn enhances pain responsivity. Such relationships have not been examined in younger populations. Thus, the present study used structural equation modeling (SEM) to test a conceptual model in which AS would evidence an indirect relationship with pain intensity via its contribution to state-specific anticipatory anxiety in relation to a variety of laboratory pain tasks (cold pressor, thermal heat, and pressure pain) in 234 healthy children (116 girls; mean age = 12.6 years, range = 8–18 years). The model further hypothesized that existing anxious symptomatology would demonstrate a direct relationship with pain intensity. Results of the SEM supported the proposed conceptual model with the total indirect effect of AS accounting for 29% of the variance in laboratory pain intensity via its effects on pain-related anticipatory anxiety. AS did not however, evidence a direct relationship with pain intensity. Anxious symptomatology on the other hand, demonstrated a significant direct effect on pain intensity, accounting for 15% of variance. The combined effects of AS, anxiety symptoms, and anticipatory anxiety together explained 62% of the variance in pain intensity. These relationships did not differ for boys and girls indicating no moderating effect of sex in the proposed model. The present results support the potential benefit of assessing both AS and anxiety symptoms in children prior to undergoing painful stimulation.
children; adolescents; anxiety; anxiety sensitivity; laboratory pain; experimental pain; pain intensity
Anxiety sensitivity (AS) or fear of anxiety sensations has been linked to childhood learning history for somatic symptoms, suggesting that parental AS may impact children’s responses to pain. Using structural equation modeling (SEM), we tested a conceptual model in which parent AS predicted child AS, which in turn predicted a hypothesized latent construct consisting of children’s pain intensity ratings for three laboratory pain tasks (cold pressor, thermal heat and pressure). This conceptual model was tested in 211 non-clinical parent-child pairs (104 girls, mean age = 12.4 years; 178 mothers). Our model was supported in girls only indicating that the sex of the child moderated the hypothesized relationships. Thus, parent AS was related to child laboratory pain intensity via its contribution to child AS in girls but not in boys. In girls, 42% of the effect of parent AS on laboratory pain intensity was explained via child AS. In boys, there was no clear link between parent AS and child AS, although child AS was predictive of experimental pain intensity across sex. Our results are consistent with the notion that parent AS may operate via healthy girls’ own fear of anxiety symptoms to influence their responses to laboratory pain stimuli.
Perspective-The present study highlights sex differences in the links among parent and child anxiety sensitivity (AS; fear of anxiety sensations) and children’s experimental pain responses. Among girls, childhood learning history related to somatic symptoms may be a particularly salient factor in the development of AS and pain responsivity.
anxiety sensitivity; laboratory pain; children; adolescents; parent; sex differences
The current study investigated the relationship of pain to use of complementary and alternative medicine (CAM) in a U.S. nationally representative sample of 2466 persons with HIV using data from the HIV Cost and Services Utilization Study (HCSUS). Pain was conceptualized as a need characteristic within the context of predisposing, enabling, and need (PEN) characteristics following Andersen's Behavioral Model of Health Services Use. Multivariate analyses were used to examine the association of baseline PEN characteristics with CAM use by follow-up (approximately 6 months later), including use of five specific CAM domains. Change in pain from baseline to follow-up was also examined in relation to CAM use. Baseline pain was a strong predictor of CAM use, and increased pain over time was associated with use of unlicensed or underground drugs with potential for harm. These results highlight the importance of medical efforts to control pain in persons living with HIV.
Complementary medicine; alternative medicine; human immunodeficiency virus; pain
This study assessed the relationship between CNS treatment and psychologic mood using the Profile of Moods State (POMS), a standardized measure of affect, among a large sample of young adult survivors of childhood acute lymphoblastic leukemia (ALL; N = 555).
Patients and Methods
Survivors of childhood ALL (ages 18 to 33 years at study entry) participated in a structured telephone interview eliciting demographic, health, and behavioral data and the POMS. Treatment data included total dose of CNS irradiation (CRT) and intrathecal methotrexate (MTX) obtained from medical records.
Mood disturbance was reported by 24% of survivors. High-dose CRT and MTX predicted disturbance rates modestly and primarily in combination with education variables. Interactions between educational achievement, a history of attendance in special education classes, and sex were better predictors than treatment type or dose. Non-white males, those younger than 12.5 years of age at diagnosis, and those with negative perceptions of current health and cancer’s impact on employment were also at greater risk for mood disturbance (P < .01 to .001).
Although most survivors are doing well psychologically, a subset of long-term survivors show potentially serious mood disturbance. Mood disturbance seems to be a function of interactions between preexisting individual difference variables (eg, sex, race/ethnicity), treatment factors, and posttreatment educational experiences. Prevention strategies aimed at childhood cancer survivors at greatest risk for mood disturbance may be improved by focus on posttreatment psychosocial and educational supports.
CAM therapies have become increasingly popular in pediatric populations. Yet, little is known about children's preferences for CAM. This study examined treatment preferences in chronic pediatric pain patients offered a choice of CAM therapies for their pain. Participants were 129 children (94 girls) (mean age = 14.5 years ± 2.4; range = 8–18 years) presenting at a multidisciplinary, tertiary clinic specializing in pediatric chronic pain. Bivariate and multivariate analyses were used to examine the relationships between CAM treatment preferences and patient's sociodemographic and clinical characteristics, as well as their self-reported level of functioning. Over 60% of patients elected to try at least one CAM approach for pain. The most popular CAM therapies were biofeedback, yoga and hypnosis; the least popular were art therapy and energy healing, with craniosacral, acupuncture and massage being intermediate. Patients with a diagnosis of fibromyalgia (80%) were the most likely to try CAM versus those with other pain diagnoses. In multivariate analyses, pain duration emerged as a significant predictor of CAM preferences. For mind-based approaches (i.e. hypnosis, biofeedback and art therapy), pain duration and limitations in family activities were both significant predictors. When given a choice of CAM therapies, this sample of children with chronic pain, irrespective of pain diagnosis, preferred non-invasive approaches that enhanced relaxation and increased somatic control. Longer duration of pain and greater impairment in functioning, particularly during family activities increased the likelihood that such patients agreed to engage in CAM treatments, especially those that were categorized as mind-based modalities.
functional impairment; mind–body approaches; pain management; pediatric pain; quality of life
Patient expectations regarding complementary and alternative medicine (CAM) interventions have important implications for treatment adherence, attrition and clinical outcome. Little is known, however, about parent and child treatment expectations regarding CAM approaches for pediatric chronic pain problems. The present study examined ratings of the expected benefits of CAM (i.e. hypnosis, massage, acupuncture, yoga and relaxation) and conventional medicine (i.e. medications, surgery) interventions in 45 children (32 girls; mean age = 13.8 years ± 2.5) and parents (39 mothers) presenting for treatment at a specialty clinic for chronic pediatric pain. Among children, medications and relaxation were expected to be significantly more helpful than the remaining approaches (P < 0.01). However, children expected the three lowest rated interventions, acupuncture, surgery and hypnosis, to be of equal benefit. Results among parents were similar to those found in children but there were fewer significant differences between ratings of the various interventions. Only surgery was expected by parents to be significantly less helpful than the other approaches (P < 0.01). When parent and child perceptions were compared, parents expected hypnosis, acupuncture and yoga, to be more beneficial than did children, whereas children expected surgery to be more helpful than did parents (P < 0.01). Overall, children expected the benefits of CAM to be fairly low with parents' expectations only somewhat more positive. The current findings suggest that educational efforts directed at enhancing treatment expectations regarding CAM, particularly among children with chronic pain, are warranted.
Pain; expectation; child; parent; alternative therapies
In recent years, the use of complementary and alternative medicine (CAM) in pediatric populations has increased considerably, especially for chronic conditions such as cancer, rheumatoid arthritis and cystic fibrosis in which pain may be a significant problem. Despite the growing popularity of CAM approaches for pediatric pain, questions regarding the efficacy of these interventions remain. This review critically evaluates the existing empirical evidence for the efficacy of CAM interventions for pain symptoms in children. CAM modalities that possess a published literature, including controlled trials and/or multiple baseline studies, that focused on either chronic or acute, procedural pain were included in this review. The efficacy of the CAM interventions was evaluated according to the framework developed by the American Psychological Association (APA) Division 12 Task Force on Promotion and Dissemination of Psychological Procedures. According to these criteria, only one CAM approach reviewed herein (self-hypnosis/guided imagery/relaxation for recurrent pediatric headache) qualified as an empirically supported therapy (EST), although many may be considered possibly efficacious or promising treatments for pediatric pain. Several methodological limitations of the existing literature on CAM interventions for pain problems in children are highlighted and future avenues for research are outlined.
complementary medicine; alternative medicine; pediatric pain; pain; children
Little is known about pain among long-term adult survivors of childhood cancers. The study investigated pain prevalence in this population compared with sibling controls and examined pain-related risk factors. Three self-reported pain outcomes including pain conditions, prescription analgesics used, and pain attributed to cancer and treatment were assessed among 10,397 cancer survivors and 3,034 sibling controls from the Childhood Cancer Survivor Study (CCSS). Pain conditions (pain/abnormal sensation, migraines, and other headaches) were reported by 12.3%, 15.5%, and 20.5% of survivors respectively; 16.7% of survivors reported use of prescription analgesics, and 21% attributed pain to cancer and treatment. Risks of reporting pain conditions and using prescription analgesics were higher among survivors than siblings adjusting for sociodemographic factors. Younger age at diagnosis and a history of non-Hodgkin lymphoma, Wilms tumor, or neuroblastoma (compared to leukemia) were associated with greater risk of reporting pain conditions. A history of bone cancer or soft tissue sarcoma (compared to leukemia) was associated with greater risks of using prescription analgesics and cancer-related pain attribution. Non-brain directed scatter irradiation was associated with elevated risk for migraines and cancer-related pain attribution. Female gender and lower educational attainment were associated with increased reports of all three pain outcomes; minority status, unemployment, and being single were associated with greater risks for reporting pain conditions. These findings contribute to the understanding of pain and associated risk factors among adult survivors of childhood cancer and suggest areas of focus for pain intervention.
Long-term adult survivors of childhood cancer; Self-reported pain; Pain attribution; Risk factors
Recent studies have found that a subset of young adult survivors of childhood cancer report posttraumatic stress symptoms in response to their diagnosis and treatment. However, it is unclear if these symptoms are associated with impairment in daily functions and/or significant distress, thereby resulting in a clinical disorder. Furthermore, it is unknown whether this disorder continues into very long-term survivorship, including the 3rd and 4th decades of life. This study hypothesized that very long-term survivors of childhood cancer would be more likely to report symptoms of posttraumatic stress disorder, with functional impairment and/or clinical distress, compared to a group of healthy siblings.
Patients and Methods
6,542 childhood cancer survivors over the age of 18 who were diagnosed between 1970 and 1986 and 368 siblings of cancer survivors completed a comprehensive demographic and health survey.
589 survivors (9%) and 8 siblings (2%) reported functional impairment and/or clinical distress in addition to the set of symptoms consistent with a full diagnosis of Posttraumatic Stress Disorder (PTSD). Survivors had more than a four-fold risk of PTSD compared to siblings (OR=4.14, 95%CI: 2.08-8.25). Controlling for demographic and treatment variables, increased risk of PTSD was associated with educational level of high school or less (OR=1.51, 95% CI=1.16-1.98), being unmarried (OR=1.99, 95% CI=1.58-2.50), annual income less than $20,000 (OR=1.63, 95% CI=1.21-2.20), and being unemployed (OR=2.01, 95% CI=1.62-2.51). Intensive treatment was also associated with increased risk of full PTSD (OR=1.36, 95% CI 1.06 -1.74).
Posttraumatic stress disorder is reported significantly more often by childhood cancer survivors than by sibling controls. Although most survivors are apparently doing well, a subset report significant impairment that may warrant targeted intervention.
childhood cancer; young adult
Among survivors of childhood cancer, those with Central Nervous System (CNS) malignancies have been found to be at greatest risk for neuropsychological dysfunction in the first few years following diagnosis and treatment. This study follows survivors to adulthood to assess the long term impact of childhood CNS malignancy and its treatment on neurocognitive functioning.
Participants & Methods
As part of the Childhood Cancer Survivor Study (CCSS), 802 survivors of childhood CNS malignancy, 5937 survivors of non-CNS malignancy and 382 siblings without cancer completed a 25 item Neurocognitive Questionnaire (CCSS-NCQ) at least 16 years post cancer diagnosis assessing task efficiency, emotional regulation, organizational skills and memory. Neurocognitive functioning in survivors of CNS malignancy was compared to that of non-CNS malignancy survivors and a sibling cohort. Within the group of CNS malignancy survivors, multiple linear regression was used to assess the contribution of demographic, illness and treatment variables to reported neurocognitive functioning and the relationship of reported neurocognitive functioning to educational, employment and income status.
Survivors of CNS malignancy reported significantly greater neurocognitive impairment on all factors assessed by the CCSS-NCQ than non-CNS cancer survivors or siblings (p<.01), with mean T scores of CNS malignancy survivors substantially more impaired that those of the sibling cohort (p<.001), with a large effect size for Task Efficiency (1.16) and a medium effect size for Memory (.68). Within the CNS malignancy group, medical complications, including hearing deficits, paralysis and cerebrovascular incidents resulted in a greater likelihood of reported deficits on all of the CCSS-NCQ factors, with generally small effect sizes (.22-.50). Total brain irradiation predicted greater impairment on Task Efficiency and Memory (Effect sizes: .65 and .63, respectively), as did partial brain irradiation, with smaller effect sizes (.49 and .43, respectively). Ventriculoperitoneal (VP) shunt placement was associated with small deficits on the same scales (Effect sizes: Task Efficiency .26, Memory .32). Female gender predicted a greater likelihood of impaired scores on 2 scales, with small effect sizes (Task Efficiency .38, Emotional Regulation .45), while diagnosis before age 2 years resulted in less likelihood of reported impairment on the Memory factor with a moderate effect size (.64). CNS malignancy survivors with more impaired CCSS-NCQ scores demonstrated significantly lower educational attainment (p<.01), less household income (p<.001) and less full time employment (p<.001).
Survivors of childhood CNS malignancy are at significant risk for impairment in neurocognitive functioning in adulthood, particularly if they have received cranial radiation, had a VP shunt placed, suffered a cerebrovascular incident or are left with hearing or motor impairments. Reported neurocognitive impairment adversely affected important adult outcomes, including education, employment, income and marital status.
Neurocognitive functioning; brain tumors; CNS malignancies; Childhood Cancer Survivor Study