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1.  Neurocognitive Status in Long-Term Survivors of Childhood CNS Malignancies: A Report from the Childhood Cancer Survivor Study 
Neuropsychology  2009;23(6):705-717.
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.
PMCID: PMC2796110  PMID: 19899829
Neurocognitive functioning; brain tumors; CNS malignancies; Childhood Cancer Survivor Study
2.  Measuring the impact of cancer: a comparison of non-Hodgkin lymphoma and breast cancer survivors 
Self-report instruments such as the Impact of Cancer (IOC) are designed to measure quality of life (QOL) impacts that cancer survivors attribute to their cancer experience. Generalizability of QOL findings across distinct diagnostic categories of survivors is untested. We compare measurement of the impact of cancer using the IOC instrument in breast cancer (BC) survivors (n = 1,188) and non-Hodgkin lymphoma (NHL) survivors (n = 652).
A registry-based sample of NHL survivors completed the IOC questionnaire and the FACT-G, FACT-LYM, Medical Outcomes Study (MOS) SF-36, Post-Traumatic Stress Disorder Checklist-Civilian Version, Post-Traumatic Growth Inventory and MOS Social Support scales. IOC responses of the NHL survivors were subjected to de novo scaling to identify impact domains for comparison to IOC version 2 (IOCv2) domains, which were previously developed based on BC survivor responses. Concurrent validity was assessed by correlating the IOCv2 scales with the other measures. IOCv2 scores were compared between the BC and NHL survivor samples.
The BC and NHL survivors exhibited similar impact domains and had factor structures that were largely congruent. The concurrent validity analysis revealed patterns of association that supported the interpretation and validity of the IOCv2 scales. Differences in IOCv2 scores between the BC and NHL groups suggested differential impacts in distinct survivor groups that could be detected using the IOCv2.
The results suggest that the IOCv2 measures common and important survivor concerns and support its generalizability to the broader long-term cancer survivor population.
Implications for Cancer Survivors
Instruments such as the IOCv2 can provide valid assessment of QOL impacts in long-term cancer survivors, facilitating the characterization of these impacts and development of appropriate interventions.
Electronic supplementary material
The online version of this article (doi:10.1007/s11764-009-0106-1) contains supplementary material, which is available to authorized users.
PMCID: PMC2813525  PMID: 19967410
Breast cancer; Cancer survivor; Non-Hodgkin lymphoma; Quality of life
3.  Radiation, Atherosclerotic Risk Factors and Stroke Risk in Survivors of Pediatric Cancer: a Report from the Childhood Cancer Survivor Study 
The impact of childhood cranial radiation therapy (CRT) on stroke risk in adulthood, and the role of modifiable atherosclerotic risk factors, remains poorly defined. We assessed long-term incidence rates and stroke risk factors in survivors of childhood cancer followed by the Childhood Cancer Survivor Study (CCSS).
Patients and Methods
CCSS is a multi-institutional retrospective cohort study of 14,358 five-year survivors of childhood cancer and 4,023 randomly selected sibling controls with longitudinal follow up. Age-adjusted incidence rates of self-reported late-occurring (≥ 5 years after diagnosis) first-stroke were calculated. Multivariable Cox Proportional Hazards models were used to identify independent stroke predictors.
During a mean follow-up of 23.3 years, 292 survivors reported a late-occurring stroke. The age-adjusted stroke rate per 100,000 person-years was 77 (95% Confidence Interval [CI] 62–96) compared to 9.3 (95% CI 4–23) for siblings. Treatment with CRT increased stroke risk in a dose dependent manner: hazard ratio (HR) 5.9 (95% CI 3.5–9.9) for 30–49 Gy CRT, and 11.0 (7.4–17.0) for 50+ Gy CRT. The cumulative stroke incidence in survivors treated with 50+ Gy CRT was 1.1% (95% CI 0.4–1.8) at 10 years post-diagnosis and 12% (95% CI 8.9–15.0) at 30 years. Hypertension (HTN) increased stroke hazard by 4-fold (95% CI 2.8–5.5) and in black survivors by 16-fold (95% CI 6.9–36.6).
Young adult pediatric cancer survivors have an increased stroke risk that is associated with CRT in a dose dependent manner. Atherosclerotic risk factors enhanced this risk and should be treated aggressively.
PMCID: PMC3696633  PMID: 23680033
4.  Cardiovascular Risk Factors in Adult Survivors of Pediatric Cancer – a report from the Childhood Cancer Survivor Study 
Childhood cancer survivors are at higher risk of morbidity and mortality from cardiovascular (CV) disease compared with the general population.
8,599 survivors (52% male) and 2,936 siblings (46% male).from the Childhood Cancer Survivor Study (CCSS), a retrospectively ascertained – prospectively followed study of persons who survived 5 years after childhood cancer diagnosed from 1970–1986 were evaluated for BMI ≥30 kg/m2 based on self reported heights and weights and self-reported use of medications for hypertension, dyslipidemia, and impaired glucose metabolism. The presence of ≥3 of the above constituted Cardiovascular Risk Factor Cluster (CVRFC) a surrogate for Metabolic Syndrome
Survivors were more likely than siblings to take medications for hypertension (OR 1.9 95% CI 1.6–2.2), dyslipidemia (OR 1.6 95% CI 1.3–2.0) or diabetes (OR 1.7 95% CI 1.2–2.3). Among these young adults (mean age 32 years for survivors and 33 years for siblings) survivors were not more likely than siblings to be obese or have CVRFC. In a multivariable logistic regression analysis, factors associated with having CVRFC included: older age at interview (≥ 40 vs. < 30 years of age [OR 8.2 95% CI 3.5–19.9]), exposure to total body irradiation (OR 5.5 95% CI 1.5–15.8) or radiation to the chest and abdomen (OR 2.3 95% CI 1.2–2.4), and physical inactivity (OR 1.7 95% CI 1.1–2.6).
Among adult survivors of pediatric cancer, older attained age, exposure to TBI or abdominal plus chest radiation, and a sedentary lifestyle are associated with CVRFC.
PMCID: PMC2805162  PMID: 20056636
survivor; cardiovascular risk factors; metabolic syndrome
5.  Psychometric properties of KIDSCREEN-27 among childhood cancer survivors and age matched peers: a Rasch analysis 
There is a growing population of children and adolescents that have survived their cancer diagnosis. Therefore, it is of great importance to perform follow-up studies with relevant, valid and sensitive measures. It is of interest both to follow changes over time and to compare results from childhood cancer survivors with those from persons without this experience, to fully understand the impact and complexity of childhood cancer in regard to different aspects of quality of life. The aim of this study was to evaluate the psychometric properties of KIDCSREEN-27 for use with survivors of childhood cancer.
KIDSCREEN-27 consists of five dimensions measuring health-related quality of life (HRQoL) in children and adolescents; 63 survivors, (4–6 years post- diagnosis) aged 12–22 and 257 from a comparison group were assessed. KIDSCREEN-27 was evaluated using a Rasch Partial Credit Model (PCM). The aspects studied were the properties of the rating scale including threshold values, internal scale validity, unidimensionality, person response validity, and differential item functioning (DIF) comparing the survivors with peers.
The rating scales revealed almost expected patterns of responses, and the threshold ordering for two of three rating scales displayed acceptable results. The items demonstrated acceptable goodness-of-fit MnSq values in 23 of 27 items (85.2%). The explained variance within each dimension was above the set criterion (50%) for all dimensions except Autonomy & Parent Relations (39.8%). Person goodness-of-fit showed acceptable results in four of five dimensions. No DIF was detected with regard to cancer experience (survivors/comparison group).
Based on the performed Rasch analysis, KIDSCREEN-27 is recommended, with the exception of Autonomy & Parent Relations, due to non-satisfactory unidimensionality, for use among adolescents and young adults who have survived childhood cancer. Still, it is recommended that future research should include a larger sample of childhood cancer survivors in order to monitor some items more thoroughly and explore different levels and patterns of HRQoL in KIDSCREEN-27.
PMCID: PMC3693895  PMID: 23764269
Health-related quality of life (HRQoL); Kidscreen; Psychometrics; Rasch analysis
6.  Prevalence and Predictors of Risky and Heavy Alcohol Consumption Among Adult Siblings of Childhood Cancer Survivors 
Psycho-oncology  2012;22(5):1134-1143.
To describe alcohol consumption patterns and risk factors for heavy alcohol use among siblings of childhood cancer survivors compared to survivors and national controls.
Secondary analysis of prospectively collected data from two national surveys was performed including a cohort of 3,034 adult siblings of childhood cancer survivors (age 18-56 years) and 10,398 adult childhood cancer survivors both from the Childhood Cancer Survivor Study, plus 5,712 adult participants from the population-based National Alcohol Survey. Cancer-related experiences, self-reported current health and mental health were examined in relation to alcohol consumption patterns including heavy and risky drinking.
Adult siblings of childhood cancer survivors were more likely to be heavy drinkers (ORadj=1.3; 1.0-1.6) and risky drinkers (ORadj=1.3; 1.1-1.6) compared to controls from a national sample. Siblings were also more likely to drink at these two levels compared to survivors. Factors associated with heavy drinking among siblings include being 18-21 years old (ORadj=2.9; 2.0-4.4), male (ORadj=2.3; 1.7-3.0), having a high school education or less (ORadj=2.4; 1.7-3.5), and drinking initiation at a young age (ORadj=5.1; 2.5-10.3). Symptoms of depression, (ORadj=2.1; 1.3-3.2), anxiety (ORadj=1.9; 1.1-3.3) and global psychiatric distress (ORadj=2.5; 1.5-4.3) were significantly associated with heavy alcohol use.
Siblings of children with cancer are more likely to be heavy drinkers as adults compared to childhood cancer survivors or national controls. Early initiation of drinking and symptoms of psychological distress should be identified during early adolescence and effective sibling-specific interventions should be developed and made available for siblings of children with cancer.
PMCID: PMC3648621  PMID: 22736595
alcohol; childhood cancer; heavy drinking; risky drinking; siblings; cancer; alcohol/drug use; mental health; psychological impact
7.  Suicide Ideation and Associated Mortality in Adult Survivors of Childhood Cancer 
Cancer  2013;120(2):271-277.
Adult survivors of childhood cancer are at-risk for suicide ideation, though longitudinal patterns and rates of recurrent suicide ideation are unknown. We investigated the prevalence of late report (i.e. post-initial assessment) and recurrent suicide ideation in adult survivors of childhood cancer, identified predictors of suicide ideation, and examined associations among suicide ideation and mortality.
Participants included 9,128 adult survivors of childhood cancer and 3,082 sibling controls enrolled in the Childhood Cancer Survivor Study who completed a survey question assessing suicide ideation on one or more occasions between 1994 and 2010. Suicide ideation was assessed using the Brief Symptom Inventory-18. Mortality data was ascertained from the National Death Index.
Survivors were more likely to report late (Odds Ratio (OR) =1.9; 95% Confidence Interval (CI) =1.5–2.5) and recurrent suicide ideation (OR=2.6, 95% CI=1.8–3.8) compared to siblings. Poor physical health status was associated with increased risk of suicide ideation in survivors (late report: OR=1.9, 95% CI=1.3–2.7; recurrent: OR=1.9, 95% CI=1.2–2.9). Suicide ideation was associated with increased risk for all-cause mortality (Hazard Ratio (HR) =1.3, 95% CI=1.03–1.6) and death by external causes (HR=2.4, 95% CI=1.4–4.1).
Adult survivors of childhood cancer are at-risk for late report and recurrent suicide ideation, which is associated with increased risk of mortality. Routine screening for psychological distress in adult survivors appears warranted, especially for survivors who develop chronic physical health conditions.
PMCID: PMC3947253  PMID: 24122148
childhood cancer; survivorship; suicide; mortality; late effects
8.  Self-Reported Health Problems of Young Adults in Clinical Settings: Survivors of Childhood Cancer and Healthy Controls 
Increasing numbers of childhood cancer survivors are seen in primary care settings as young adults. It is unknown how their self-reported health problems differ from those of healthy young adults. Self-reported health problems of cancer survivors and healthy controls are compared in this study.
156 cancer survivors visiting a cancer survivorship program and 138 controls in primary care centers (mean age of 20 years) completed the Health Knowledge Inventory (HKI), a checklist of 35 health problems.
Cancer survivors reported significantly more health problems than healthy controls (5.6 vs 2.6 problems, p < .001). For cancer survivors, more intense treatment and older age related to Organic/Major problems and Constitutional/Other problems. Female gender related to report of Organic/Major and Constitutional/Other problems for the controls. While at least 20% of both healthy controls and survivors endorsed dermatologic, headache, gastrointestinal and weight problems, survivors endorsed growth, thyroid, kidney, immunological, heart, and fertility problems fourfold over controls.
Cancer survivors endorse significantly more health problems than healthy controls. However, some problems are reported with equal frequency among the groups. Understanding these similarities and differences between survivors and healthy controls will facilitate patient-centered comprehensive care for young adult cancer survivors.
PMCID: PMC2868275  PMID: 20453176
health problems; childhood cancer survivors; young adults; checklist; primary care
9.  Cardiac outcomes in a cohort of adult survivors of childhood and adolescent cancer: retrospective analysis of the Childhood Cancer Survivor Study cohort 
Objectives To assess the incidence of and risks for congestive heart failure, myocardial infarction, pericardial disease, and valvular abnormalities among adult survivors of childhood and adolescent cancers.
Design Retrospective cohort study.
Setting 26 institutions that participated in the Childhood Cancer Survivor Study.
Participants 14 358 five year survivors of cancer diagnosed under the age of 21 with leukaemia, brain cancer, Hodgkin’s lymphoma, non-Hodgkin’s lymphoma, kidney cancer, neuroblastoma, soft tissue sarcoma, or bone cancer between 1970 and 1986. Comparison group included 3899 siblings of cancer survivors.
Main outcome measures Participants or their parents (in participants aged less than 18 years) completed a questionnaire collecting information on demographic characteristics, height, weight, health habits, medical conditions, and surgical procedures occurring since diagnosis. The main outcome measures were the incidence of and risk factors for congestive heart failure, myocardial infarction, pericardial disease, and valvular abnormalities in survivors of cancer compared with siblings.
Results Survivors of cancer were significantly more likely than siblings to report congestive heart failure (hazard ratio (HR) 5.9, 95% confidence interval 3.4 to 9.6; P<0.001), myocardial infarction (HR 5.0, 95% CI 2.3 to 10.4; P<0.001), pericardial disease (HR 6.3, 95% CI 3.3 to 11.9; P<0.001), or valvular abnormalities (HR 4.8, 95% CI 3.0 to 7.6; P<0.001). Exposure to 250 mg/m2 or more of anthracyclines increased the relative hazard of congestive heart failure, pericardial disease, and valvular abnormalities by two to five times compared with survivors who had not been exposed to anthracyclines. Cardiac radiation exposure of 1500 centigray or more increased the relative hazard of congestive heart failure, myocardial infarction, pericardial disease, and valvular abnormalities by twofold to sixfold compared to non-irradiated survivors. The cumulative incidence of adverse cardiac outcomes in cancer survivors continued to increase up to 30 years after diagnosis.
Conclusion Survivors of childhood and adolescent cancer are at substantial risk for cardiovascular disease. Healthcare professionals must be aware of these risks when caring for this growing population.
PMCID: PMC3266843  PMID: 19996459
10.  Prevalence and Predictors of Posttraumatic Stress Disorder in Adult Survivors of Childhood Cancer: a report from the Childhood Cancer Survivor Study 
Pediatrics  2010;125(5):e1124-e1134.
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.
PMCID: PMC3098501  PMID: 20435702
childhood cancer; young adult
11.  Preterm Delivery Among Female Survivors of Childhood, Adolescent and Young Adulthood Cancer 
We studied the deliveries of female cancer survivors and female siblings in a population-based setting in Finland. Nationwide cancer and birth registries were merged to identify 1309 first post-diagnosis deliveries of early onset (diagnosed under age 35) female cancer patients and 5916 first deliveries of female siblings occurring in 1987–2006. Multiple logistic regression models were used to estimate risk of preterm (<37weeks), low birth weight (LBW) (<2500g), and small-for-gestational-age (SGA) deliveries.
The risk of preterm delivery among cancer survivors compared to siblings was overall elevated (Odds ratio (OR) 1.46, 95% confidence interval (CI) 1.14–1.85), the increase in risk being visible in all diagnostic age groups. Risk of LBW was also significantly increased (OR 1.68; 95% CI 1.29–2.18) but not after adjustment for duration of pregnancy (OR 1.11; 95% CI 0.76–1.64). Neither was the risk of SGA increased. The risk of preterm delivery was most pronounced in survivors delivering ten years or more after diagnosis. Site specific analyses indicated that survivors of germ cell tumors and central nervous system (CNS) tumors were at increased risk of preterm delivery, although numbers were small. In childhood survivors, kidney tumors formed the main cause of preterm delivery.
Pediatric, adolescent and young adult cancer survivors are at risk for preterm delivery. Heightened surveillance is recommended especially for Wilms’, germ cell and CNS tumor survivors. Such adverse pregnancy outcomes can occur a decade or more after cancer diagnosis indicating a continued need for obstetric awareness, surveillance and counseling in former cancer patients.
PMCID: PMC2919618  PMID: 20054856
Preterm; Cancer survivors; Pregnancy; Late-effects
12.  Emotional distress among adult survivors of childhood cancer 
To estimate the prevalence of emotional distress in a large cohort of adult survivors of childhood cancer and evaluate the interrelationship of risk factors including cancer-related late effects.
1,863 adult survivors of childhood cancer, median age of 32 years at follow-up, completed comprehensive medical evaluations. Clinically relevant emotional distress was assessed using the Brief Symptom Inventory-18 and was defined as T-scores ≥63. Odds ratios (OR) and 95% confidence intervals (CI) were calculated using multivariable logistic regression models to identify risk factors for distress. Path analysis was used to examine associations among identified risk factors.
Elevated global distress was reported by 15.1% of survivors. Cancer-related pain was associated with elevated distress (OR 8.72; 95% CI, 5.32 – 14.31). Survivors who reported moderate learning or memory problems were more likely to have elevated distress than survivors who reported no learning or memory problems (OR 3.27; 95% CI, 2.17 – 4.93). Path analysis implied that cancer-related pain has a direct effect on distress symptoms and an indirect effect through socioeconomic status and learning or memory problems. Similar results were observed for learning or memory problems.
Childhood cancer-related morbidities including pain and learning or memory problems appear to be directly and indirectly associated with elevated distress symptoms decades after treatment. Understanding these associations may help inform intervention targets for survivors of childhood cancer experiencing symptoms of distress.
Implications for cancer survivors
A subset of long-term childhood cancer survivors experience significant emotional distress. Physical and cognitive late effects may contribute to these symptoms.
PMCID: PMC4098755  PMID: 24459073
emotional distress; childhood cancer; survivorship; late effects
13.  Impact of Insurance Type on Survivor-Focused and General Preventive Health Care Utilization in Adult Survivors of Childhood Cancer: The Childhood Cancer Survivor Study (CCSS) 
Cancer  2010;117(9):1966-1975.
Lack of health insurance is a key barrier to accessing care for chronic conditions and cancer screening. We examined the influence of insurance type (private, public, none) on survivor-focused and general preventive health care in adult survivors of childhood cancer.
The Childhood Cancer Survivor Study is a retrospective cohort study of childhood cancer survivors diagnosed between 1970–1986. Among 8425 adult survivors, the Relative Risk (RR), 95% confidence interval (CI) of receiving survivor-focused and general preventive health care were estimated for uninsured (n=1390) and publicly insured (n=640), comparing to privately insured (n=6395).
Uninsured survivors were less likely than privately insured to report a cancer-related (adjusted RR=0.83, 95% CI, 0.75–0.91) or a cancer center visit (adjusted RR=0.83, 95% CI, 0.71–0.98). Uninsured survivors had lower levels of utilization in all measures of care in comparison with privately insured. In contrast, publicly insured survivors were more likely to report a cancer-related (adjusted RR=1.22, 95% CI, 1.11–1.35) or a cancer center visit (adjusted RR=1.41, 95% CI, 1.18–1.70) than privately insured. While having a similar utilization level of general health examinations, publicly insured survivors were less likely to report Papanicolaou smear or dental examinations.
Among this large, socioeconomically diverse cohort, publicly insured survivors utilize survivor-focused health care at rates at least as high as survivors with private insurance. Uninsured survivors have lower utilization to both survivor-focused and general preventive health care.
PMCID: PMC3433164  PMID: 21509774
Childhood Cancer Survivors; Health Insurance; Health Care Access; Survivorship; Delivery of Health Care
14.  Measuring health-related beliefs of mothers of adolescent and young adult childhood cancer survivors 
Childhood cancer has long-term implications for survivors and their family members. While the impact of cancer on the family continues into adulthood, little research exists on family-related issues during this important developmental period. In order to advance our understanding of families of adolescent and young adult (AYA) childhood cancer survivors, a measure of health-related beliefs for parents of AYA cancer survivors was developed. Exploratory factor analysis based on the mothers' data was used to identify four factors among 23 items: Social Competence, Satisfaction with Healthcare, Health Perceptions, and Health Apprehension. The scales are associated with psychological distress, quality of life, and posttraumatic stress symptoms but unrelated to age of the child at diagnosis and cancer treatment intensity. The beliefs identified in this study are consistent with clinical observations of families of young adult survivors and provide indications for the importance of ongoing attention to the families of childhood cancer survivors.
PMCID: PMC3143683  PMID: 21417524
beliefs; childhood cancer; survivors; families; parents; adolescents; young adults
15.  Impact of CNS Treatment on Mood in Adult Survivors of Childhood Leukemia: A Report From the Children’s Cancer Group 
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.
PMCID: PMC1459335  PMID: 14645430
16.  Prevalence and Predictors of Prescription Psychoactive Medication Use in Adult Survivors of Childhood Cancer: A Report from the Childhood Cancer Survivor Study 
Childhood cancer survivors are at-risk for late effects which may be managed pharmacologically. The purpose of this study was to estimate and compare the prevalence of psychoactive medication use of adult survivors of childhood cancer and sibling controls, identify predictors of medication use in survivors, and investigate associations between psychoactive medications and health-related quality of life (HRQOL).
Psychoactive medication use from 1994 to 2010 was evaluated in 10,378 adult survivors from the Childhood Cancer Survivor Study. A randomly selected subset of 3,206 siblings served as a comparison group. Multivariable logistic regression models were used to calculate odds ratios (OR) for baseline and new onset of self-reported psychoactive medication use and HRQOL.
Survivors were significantly more likely to report baseline (22% vs. 15%, p<0.001) and new onset (31% vs. 25%, p<0.001) psychoactive medication use compared to siblings, as well as use of multiple medications (p<0.001). In multivariable models, controlling for pain and psychological distress, female survivors were significantly more likely to report baseline and new onset use of antidepressants (OR=2.66; 95% CI=2.01–3.52; OR=2.02; 95% CI=1.72–2.38, respectively) and multiple medications (OR=1.80; 95% CI=1.48–2.19; OR=1.77; 95% CI=1.48–2.13, respectively). Non-cranial radiation and amputation predicted incident use of analgesics >15 years following diagnosis. Antidepressants were associated with impairment across all domains of HRQOL, with the exception of physical function.
Prevalence of psychoactive medication use was higher among survivors for most medication classes, as was the use of multiple medications. Clinicians should be aware of the possible contribution of psychoactive medications to HRQOL.
PMCID: PMC3568188  PMID: 23224753
psychoactive medication; quality of life; survivorship
17.  Attentional and executive dysfunction as predictors of smoking within the Childhood Cancer Survivor Study cohort 
Nicotine & Tobacco Research  2010;12(4):344-354.
Previous research has suggested that childhood cancer survivors initiate smoking at rates approaching those of healthy individuals, even though smoking presents unique risks to survivors. The present study explores whether the attentional and executive functioning (EF) deficits associated with cancer and treatment place survivors of childhood cancer at increased risk for smoking.
Data from the Childhood Cancer Survivor Study were examined to identify concurrent and longitudinal correlates of tobacco use. We explored whether childhood attention problems and adulthood executive dysfunction were associated with smoking among adult survivors of childhood cancer.
Childhood attention problems emerged as a striking predictor of adult smoking nearly a decade later on average. Nearly half (40.4%) of survivors who experienced attention problems in childhood reported a history of smoking, a significantly higher rate of ever smoking, than reported by those without childhood attention problems (relative risk [RR] = 1.53, 95% CI = 1.31–1.79). Furthermore, they were nearly twice as likely to be current smokers in adulthood compared with those without childhood attention problems (RR = 1.71, 95% CI = 1.38–2.11). Similar associations were found between components of adult executive dysfunction and adult smoking.
Childhood cancer and treatment are associated with subsequent deficits in attention and EF. Early detection of these deficits will allow clinicians to identify patients who are at increased risk for smoking, an important step in promoting and maintaining health in this medically vulnerable population.
PMCID: PMC2847073  PMID: 20154054
18.  Cancer screening practices of adult survivors of retinoblastoma at risk of second cancers 
Cancer  2008;113(2):434-441.
The aim of the current study was to investigate the pattern of cancer screening behavior in adult retinoblastoma survivors, who are at high risk of developing second cancers.
Self-reported cancer screening practices were investigated in a cohort of retinoblastoma survivors to evaluate whether they were receiving adequate screening for specific cancers and compare these rates with those of other adult survivors of childhood cancer and the general population. The prevalence of breast self-examination, clinical breast examination, mammography, Papanicolaou (Pap) test, testicular self-examination, and magnetic resonance imaging (MRI) or computed tomography (CT) scanning was determined from computer-aided telephone interviews with 836 retinoblastoma survivors aged >18 years.
Among female survivors, 87% had a Pap test within the past 2 years, and 76% of females age >40 years reported having a mammogram within the past 2 years; 17.4% of male survivors had performed monthly testicular self-examinations. A significantly higher proportion of hereditary compared with nonhereditary survivors reported having undergone an MRI or CT scan in the past 5 years. Higher education, greater contact with the medical care system, and having a second cancer were found to be associated positively with most screening practices. Cancer screening practices reported by retinoblastoma survivors were similar to national screening rates for breast, cervical, and testicular cancer.
To the authors' knowledge, the current study provides the first report of cancer screening practices of retinoblastoma survivors. Survivors of hereditary retinoblastoma should be encouraged to maintain, if not increase, their current screening practices to ensure early detection of second cancers in this high-risk population.
PMCID: PMC4012415  PMID: 18473349
19.  Decreased adult height in survivors of childhood acute lymphoblastic leukemia: a report from the Childhood Cancer Survivor Study 
The Journal of pediatrics  2007;150(4):370-375.e1.
To determine risk factors associated with reduced adult height in survivors of childhood acute lymphoblastic leukemia (ALL).
Study design
Cross-sectional study. Attained adult height was determined among 2,434 ALL survivors participating in the Childhood Cancer Survivor Study, a cohort of five-year survivors of common pediatric cancers diagnosed from 1970–1986, and compared with 3,009 siblings.
All survivor treatment exposure groups (chemotherapy alone, chemotherapy with cranial or craniospinal radiotherapy) had decreased adult heights and an increased risk of adult short stature (height standard deviation score < −2) compared with siblings (p<0.001). Compared with siblings, the risk of short stature for survivors treated with chemotherapy alone was elevated (OR 3.4, 95% CI 1.9, 6.0). Among survivors, significant risk factors for short stature included diagnosis of ALL prior to puberty, higher dose cranial radiotherapy (≥20 Gy versus <20 Gy), any radiotherapy to the spine, and female sex.
Survivors of childhood ALL are at increased risk of adult short stature, including those treated with chemotherapy alone. Risk is highest for those treated with cranial and craniospinal radiotherapy at a young age.
PMCID: PMC2766352  PMID: 17382112
chemotherapy; epidemiology; growth deficiency; late effects; radiation; survivorship
20.  Prospectively Examining Physical Activity in Young Adult Survivors of Childhood Cancer and Healthy Controls 
Pediatric blood & cancer  2012;60(2):309-315.
This study compares young adult survivors of childhood cancer (YASCC) and young adults without a history of serious illness/injury on physical activity levels and examines psychological predictors of physical activity in survivors over a two month period.
YASCC participants (n = 117) and healthy controls (n = 148), ages 18–30, recruited during cancer survivorship clinic or primary care clinics completed self-report measures of physical activity, health problems, psychological distress, and health beliefs (Health Perceptions, Satisfaction with Healthcare, Cognitive Competence, Autonomy). Survivorship providers completed ratings of health problems and treatment intensity for survivors.
Survivors had significantly lower levels of physical activity than controls. Family income, survivor-reported health problems and less positive health beliefs were associated with lower rates of physical activity. Provider-reported survivor health problems and ratings of cancer treatment intensity were not related to survivor physical activity. Less positive survivor beliefs about their cognitive competence predicted survivor physical activity two months later after accounting for other pertinent demographic, medical and psychological variables.
YASCC were significantly less active than healthy controls. YASCC with more self-identified health problems and negative beliefs about their cognitive competence were less physically active. Beliefs about their health and cognitive competencies may be viable areas for assessment and intervention in order to promote increased engagement in physical activity.
PMCID: PMC3391612  PMID: 22434746
survivorship; long-term survival; psychology; psychosocial health behaviors
21.  Perceived Positive Impact of Cancer Among Long-term Survivors of Childhood Cancer: a report from the Childhood Cancer Survivor Study 
Psycho-oncology  2011;21(6):630-639.
Investigations examining psychosocial adjustment among childhood cancer survivors have focused primarily on negative effects and psychopathology. Emergent literature suggests the existence of positive impact or adjustment experienced after cancer, as well. The purpose of this study is to examine the distribution of Perceived Positive Impact (PPI) and its correlates in young adult survivors of childhood cancer.
6,425 survivors and 360 siblings completed a comprehensive health survey, inclusive of a modified version of the Posttraumatic Growth Inventory (PTGI) as a measure of PPI. Linear regression models were used to examine demographic, disease and treatment characteristics associated with PPI.
Survivors were significantly more likely than siblings to report PPI. Endorsement of PPI was significantly greater among female and non-white survivors, and among survivors exposed to at least one intense therapy, a second malignancy or cancer recurrence. Survivors diagnosed at older ages and fewer years since diagnosis were more likely to report PPI. Income, education and marital/relationship status appeared to have varied relationships to PPI depending upon the subscale being evaluated.
The existence and variability of PPI in survivors in this study suggest that individual characteristics, inclusive of race, gender, cancer type, intensity of treatment, age at diagnosis and time since diagnosis, have unique and specific associations with different aspects of perceived positive outcomes of childhood cancer.
PMCID: PMC3697081  PMID: 21425388
Psychosocial; childhood cancer; trauma; event centrality; survivors
22.  Survivor Profiles Predict Health Behavior Intent: The Childhood Cancer Survivor Study 
Psycho-oncology  2011;21(5):469-478.
To determine whether unique groups of adult childhood cancer survivors could be defined on the basis of modifiable cognitive, affective and motivation indicators. Secondary objectives were to examine to what extent group membership covaried with more static variables (e.g., demographics, disease, and treatment) and predicted intent for subsequent medical follow-up.
Using latent class analysis of data from 978 participants (ages 18–52 years; mean, 31; SD, 8) in the Childhood Cancer Survivor Study, we classified survivors according to their worries about health, perceived need for follow-up care, health motivation, and background variables. Intent to participate in medical follow-up, as a function of class membership, was tested using equality of proportions.
The best-fitting model (BIC=18,540.67, BLMRT=<0.001) was characterized by three distinctive survivor classes (worried, 19%; self-controlling, 26%; collaborative, 55%) and three significant class covariates (gender, perceptions of health and severity of late effects). A smaller proportion of survivors in the self-controlling group [81%] than in the worried [90%] (P=0.015) and collaborative [88%] (P=0.015) groups intended to obtain a routine medical checkup. A smaller proportion of survivors in the self-controlling group [32%] than in the collaborative [65%] (P=<0.001) and worried [86%] (P=<0.001) groups planned a cancer-related check-up. A smaller proportion of survivors in the collaborative group [65%] than in the worried group [86%] (P=<0.001) were likely to obtain a cancer-related check-up.
Childhood cancer survivors can be classified according to modifiable indicators. The classification is distinctive, predicts intent for future medical follow-up, and can inform tailored interventions.
PMCID: PMC3563242  PMID: 21381147
childhood cancer; survivorship; late effects; medical follow-up; pediatric oncology
23.  Young and Uninsured: Insurance Patterns of Recently Diagnosed Adolescent and Young Adult Cancer Survivors in the AYA HOPE Study 
Cancer  2014;120(15):2352-2360.
Young adults have historically been the least likely to have health insurance in the United States. Previous studies of childhood cancer survivors found lower rates of insurance and less access to medical care compared to siblings; however, no studies have examined continuity of insurance after cancer diagnosis in adolescents and young adults (AYAs).
Using the AYA Health Outcomes and Patient Experience study, a cohort of 465 15-39 year-olds from participating Surveillance, Epidemiology and End Results registries, we evaluated changes in and sponsors of health insurance coverage after diagnosis, coverage of doctor-recommended tests, and factors associated with lack of insurance post-diagnosis using chi-square tests and multivariable logistic regression.
Over 25% (n=118) of AYA cancer survivors experienced some period without insurance up to 35 months post-diagnosis. Insurance rates were high in the initial year after diagnosis (6-14 months; 93.3%) but decreased substantially at follow-up (15-35 months; 85.2%). The most common sponsor of health insurance was employer/school-coverage (43.7%). Multivariable analysis indicated that older survivors (25-39 vs. 15-19; Odds Ratio (OR): 3.35, p<0.01) and those with less education (high school or less vs. college graduate; OR: 2.80, p<0.01) were more likely to experience a period without insurance after diagnosis. Furthermore, >20% of survivors indicated there were doctor-recommended tests/treatments not covered by insurance, but >80% received them regardless of coverage.
Insurance rates decrease with time since diagnosis in AYA cancer survivors. Future studies should examine how new policies under the Affordable Care Act extend access and insurance coverage beyond initial treatment.
PMCID: PMC4108530  PMID: 24899580
adolescents and young adults; insurance; SEER; affordable care act
24.  Suicide Ideation in Adult Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study 
Journal of Clinical Oncology  2009;28(4):655-661.
To evaluate risk of suicide ideation (SI) after childhood cancer, prevalence of SI in a cohort of adult survivors of pediatric cancers was compared with prevalence in a sibling comparison group. The relationship of SI to cancer treatment and current health was examined, and the hypothesis that poor physical health is significantly associated with suicidality, after adjusting for depression, was specifically tested.
Nine thousand one hundred twenty-six adult survivors of childhood cancer and 2,968 siblings enrolled onto the Childhood Cancer Survivor Study completed a survey describing their demographics and medical and psychological functioning, including SI in the prior week.
Of survivors, 7.8% reported SI compared with 4.6% of controls (odds ratio = 1.79; 95% CI, 1.4 to 2.4). Suicidality was unrelated to age, age at diagnosis, sex, cancer therapy, recurrence, time since diagnosis, or second malignancy. SI was associated with primary CNS cancer diagnosis, depression, and poor health outcomes including chronic conditions, pain, and poor global health rating. A logistic regression analysis showed that poor current physical health was significantly associated with SI even after adjusting for cancer diagnosis and depression.
Adult survivors of childhood cancers are at increased risk for SI. Risk of SI is related to cancer diagnosis and post-treatment mental and physical health, even many years after completion of therapy. The association of suicidal symptoms with physical health problems is important because these may be treatable conditions for which survivors seek follow-up care and underscores the need for a multidisciplinary approach to survivor care.
PMCID: PMC2816000  PMID: 19841325
25.  Childhood Maltreatment History, Posttraumatic Relational Sequelae, and Prenatal Care Utilization 
To test the hypothesis that childhood maltreatment history would be associated with inadequate prenatal care utilization.
A post-hoc analysis of a prospective cohort study of the effects of post traumatic stress disorder (PTSD) on pregnancy outcomes.
Recruitment took place via prenatal clinics from three academic health systems in southeast Michigan.
This analysis included 467 diverse, nulliparous, English-speaking adult women expecting their first infants.
Data were gathered from structured telephone interviews at two time points in pregnancy and from prenatal medical records.
Contrary to our hypothesis, history of childhood maltreatment was associated with better likelihood of using adequate prenatal care. Risk for inadequate prenatal care occurred in association with the posttraumatic stress and interpersonal sensitivity that can result from maltreatment, with low alliance with the maternity care provider, and with public insurance coverage. Prior mental health treatment was associated with using adequate prenatal care.
When childhood maltreatment survivors were resilient or have used mental health treatment, they were more likely to utilize adequate prenatal care. The maternity care relationship or service delivery model (e.g., no continuity of care) as well as structural factors may adversely affect utilization among PTSD-affected survivors. Since inadequate care was associated with adverse outcomes, further studies of these modifiable factors are warranted.
PMCID: PMC4331183  PMID: 23772546
posttraumatic stress disorder; women's mental health; prenatal care; childhood maltreatment

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