Follow-up care amongst long-term childhood cancer survivors: a report from the Swiss Childhood Cancer Survivor Study

In the Swiss Childhood Cancer Survivor Study, we aimed to assess the proportion of long-term survivors attending follow-up care, to characterise attendees and to describe the health professionals involved. We sent a questionnaire to 1252 patients, of whom 985 (79%) responded, aged in average 27 years (range 20-49). Overall, 183 (19%) reported regular, 405 (41%) irregular and 394 (40%) no follow-up. For 344, severity of late effects had been classified in a previous medical examination. Only 17% and 32% of survivors with moderate and severe late effects respectively had made regular visits a decade later. Female gender, after a shorter time since diagnosis, had radiotherapy, and having suffered a relapse predicted follow-up. In the past year, 8% had seen a general practitioner only, 10% a paediatric or adult oncologist and 16% other health specialists for a cancer related problem. These findings underline the necessity to implement tailored national follow-up programmes.     

Body mass index in long-term adult survivors of childhood cancer: a report of the Childhood Cancer Survivor Study

BACKGROUND: The goals of the current study were to determine the distribution of body mass index (BMI) of survivors of common pediatric malignancies and to identify factors associated with abnormal BMI. METHODS: The Childhood Cancer Survivor Study (CCSS) is a multicenter cohort study of >/= 5-year survivors of pediatric cancer diagnosed between 1970 and 1986. Self-reported heights and weights were used to calculate BMI for 7195 adult survivors, compared with population-based, age-specific, and gender-specific norms from the 1995 National Health Interview Survey. Underweight was defined as a BMI < 18.5 kg/m(2) and obese as BMI >/= 30 kg/m(2). RESULTS: Survivors of leukemia were more likely to be obese (females: odds ratio [OR] = 1.5; 95% confidence interval [CI], 1.2-1.8; males: OR = 1.2; 95% CI, 1.0-1.5). Survivors more likely to be underweight included female and male survivors of Hodgkin disease (OR = 1.7; 95% CI, 1.3-2.3 and OR = 3.5; 95% CI, 2.3-5.3) and Wilms tumor (OR = 1.8; 95% CI, 1.2-2.8 and OR = 5.5; 95% CI, 3.1-9.7), female survivors of bone carcinoma without amputation (OR = 1.9; 95% CI, 1.2-2.9), and male survivors of leukemia (OR = 2.4; 95% CI, 1.6-3.6), brain tumors (OR = 2.7; 95% CI, 1.6-4.4), non-Hodgkin lymphoma (OR = 3.1; 95% CI, 1.9-5.2), neuroblastoma (OR = 4.9; 95% CI, 2.48-10.0), and soft tissue sarcoma (OR = 3.5; 95% CI, 2.0-6.0). In females, treatment with total body irradiation, alkylating agents, and anthracyclines and in males, treatment with abdominal radiation, younger age at treatment, and treatment with anthracyclines and alkylating agents were associated with being underweight. Underweight survivors were more likely to report adverse health and major medical conditions. CONCLUSIONS: A significant proportion of childhood survivors of cancer are underweight as adults and the impact of this on the general health of survivors will need to be addressed further.     

The cancer screening practices of adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study

BACKGROUND: The current study characterized the self-reported cancer screening practices of adult survivors of childhood cancer. METHODS: A cohort of 9434 long-term survivors of childhood cancer and a comparison group of 2667 siblings completed a 289-item survey that included items regarding cancer-screening practices. RESULTS: Overall, 27.3% of female respondents reported performing breast self-examination (BSE) regularly, 78.2% reported undergoing a Papanicolaou smear within the previous 3 years, 62.4% underwent a clinical breast examination (CBE) within the last year, and 20.9% had gotten a mammogram at least once in their lifetime. Approximately 17.4% of male respondents reported performing regular testicular self-examination (TSE). Women age > or =30 years who had been exposed to chest or mantle radiation therapy were more likely to report undergoing CBE (odds ratio [OR], 1.59; 95% confidence interval [95% CI], 1.32-1.92) and mammography (OR, 1.92; 95% CI, 1.47-2.56). Compared with the sibling comparison group, survivors demonstrated an increased likelihood of performing TSE (OR, 1.52; 95% CI, 1.22-1.85) or BSE (OR, 1.30; 95% CI, 1.10-1.52), of having undergone a CBE within the last year (OR, 1.18; 95% CI, 1.02-1.35), and of ever having undergone a mammogram (OR, 1.82; 95% CI, 1.52-2.17). CONCLUSIONS: The results of the current study demonstrate that the cancer screening practices among survivors of childhood cancer are below optimal levels. Primary care physicians who include childhood cancer survivors among their patients could benefit these individuals by informing them about future cancer risks and recommending appropriate evidence-based screening.     

Neurocognitive functioning and health-related behaviours in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study

Background

Positive health-related behaviours are essential for the future wellbeing of childhood cancer survivors, though relatively few maintain healthy behaviours into adulthood.

Methods

Neurocognitive function and emotional distress were examined in 6,440 adult survivors from the Childhood Cancer Survivor Study, and used to predict rates of expected health-related behaviours. Covariates included cancer diagnosis, age, sex, body mass index, insurance status, income and antidepressant medication use, and multivariable models were constructed adjusting for these factors.

Findings

In multivariable regression models, survivors with neurocognitive problems in task efficiency (RR = 0.77, 95% CI = 0.72-0.84) were less likely to meet the Centers for Disease Control guidelines for weekly physical activity. Survivors with neurocognitive impairment were more likely to engage in general survivor care (RR = 1.20, 95% CI = 1.10-1.30), and less likely to engage in dental care (RR = 0.92, 95% CI = 0.88-0.97). Obese survivors were less likely to report receiving a bone density exam (RR = 0.67, 95% CI = 0.54-0.82), a mammogram (RR = 0.71, 95% CI = 0.57-0.89), and a skin exam (RR = 0.78, 95% CI = 0.68-0.89). Survivors reporting somatisation, i.e. vague physical symptoms associated with anxiety, were more likely to report receiving echocardiograms (RR = 1.53, 95% CI = 1.32-1.77).

Interpretation

These results support the link between neurocognitive and emotional problems and health-related behaviours in adult survivors of childhood cancer. Monitoring neurocognitive and emotional outcomes may help to identify survivors at risk for poor adherence to prescribed health behaviours and health screening exams.     

Pregnancy outcome of partners of male survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

PURPOSE: This study was undertaken to determine the effect, if any, on pregnancy loss, live births, and birthweight of treatment for cancer diagnosed during childhood or adolescence. PATIENTS AND METHODS: We reviewed pregnancy outcome among sexually active male Childhood Cancer Survivor Study (CCSS) participants who responded to a questionnaire before February 3, 2000. Medical records of all members of the cohort were abstracted to obtain chemotherapeutic agents administered, the cumulative dose of drug administered for several drugs of interest, and the doses, volumes, and dates of administration of all radiotherapy. RESULTS: There were 4,106 sexually active males; 1,227 reported they sired 2,323 pregnancies (69% live births, 1% stillbirths, 13% miscarriages, 13% abortions, 5% unknown or in gestation). The male-to-female ratio of the offspring of the partners of the male survivors was significantly different from that of the offspring of the partners of the male siblings of the survivors (1.0:1.03 v 1.24:1.0) (P =.016). The proportion of pregnancies of the partners of male survivors that ended with a liveborn infant was significantly lower than for the partners of the male siblings of the survivors who were the control group for comparison (relative risk = 0.77, P =.007). There were no significant differences in pregnancy outcome by treatment. CONCLUSION: This large study did not identify adverse pregnancy outcomes for the partners of male survivors treated with most chemotherapeutic agents. The reversal of the sex ratio and the association observed for procarbazine warrant further investigation.     

Psychological outcomes of siblings of cancer survivors: a report from the Childhood Cancer Survivor Study

Objective: To identify risk factors for adverse psychological outcomes among adult siblings of long‐term survivors of childhood cancer. Methods: Cross‐sectional, self‐report data from 3083 adult siblings (mean age 29 years, range 18–56 years) of 5 + year survivors of childhood cancer were analyzed to assess psychological outcomes as measured by the Brief Symptom Inventory‐18 (BSI‐18). Sociodemographic and health data, reported by both the siblings and their matched cancer survivors, were explored as risk factors for adverse sibling psychological outcomes through multivariable logistic regression. Results: Self‐reported symptoms of psychological distress, as measured by the global severity index of the BSI‐18, were reported by 3.8% of the sibling sample. Less than 1.5% of siblings reported elevated scores on two or more of the subscales of the BSI‐18. Risk factors for sibling depression included having a survivor brother (OR 2.22, 95% CI 1.42–3.55), and having a survivor with impaired general health (OR 2.15, 95% CI 1.18–3.78). Siblings who were younger than the survivor reported increased global psychological distress (OR 1.81, 95% CI 1.05–3.12), as did siblings of survivors reporting global psychological distress (OR 2.32, 95% CI 1.08–4.59). Siblings of sarcoma survivors reported more somatization than did siblings of leukemia survivors (OR 2.07, 95% CI 1.05–3.98). Conclusions: These findings suggest that siblings of long‐term childhood cancer survivors are psychologically healthy in general. There are, however, small subgroups of siblings at risk for long‐term psychological impairment who may benefit from preventive risk‐reduction strategies during childhood while their sibling with cancer is undergoing treatment. Copyright © 2010 John Wiley & Sons, Ltd.     

Pulmonary complications in survivors of childhood and adolescent cancer. A report from the Childhood Cancer Survivor Study

BACKGROUND: The Childhood Cancer Survivor Study is a resource that was designed to investigate long-term effects among 5-year survivors of childhood and adolescent malignancies. Previous studies have shown that exposure to chemotherapy and/or radiation can compromise pulmonary function in these survivors of childhood cancer. METHODS: Using information obtained from questionnaires from 12,390 childhood cancer survivors and 3546 randomly selected siblings, the authors evaluated the rate of first occurrence of 15 selected pulmonary conditions in three periods: during therapy, from the end of therapy to 5 years postdiagnosis, and >/= 5 years postdiagnosis. Multivariate analyses were used to determine the relative risks with 95% confidence intervals of reported pulmonary conditions by exposure to the following treatment variables: radiation therapy to the chest, bleomycin, cyclophosphamide, busulfan, lomustine (CCNU), and/or carmustine (BCNU). RESULTS: Compared with siblings, survivors had a statistically significant increased relative risk (RR) of lung fibrosis, recurrent pneumonia, chronic cough, pleurisy, use of supplemental oxygen, abnormal chest wall, exercise-induced shortness of breath, bronchitis, recurrent sinus infection, and tonsillitis for all three periods. During the period of >or= 5 years postdiagnosis, statistically significant associations were present for lung fibrosis and chest radiation (RR, 4.3; P = 0 001); for supplemental oxygen use and chest radiation (RR, 1.8; P < 0.001), BCNU (RR, 1.4; P = 0.05), bleomycin (RR, 1.7; P = 0.001), busulfan (RR, 3.2; P = 0.002), CCNU (RR, 2.1; P < 0.001), and cyclophosphamide (RR, 1.5; P = 0.01); for recurrent pneumonia and chest radiation (RR, 2.2; P = 0.001) and cyclophosphamide (RR, 1.6; P = 0.04); for chronic cough and chest radiation (RR, 2.0; P < 0.001), bleomycin (RR, 1.9; P < 0.001), and cyclophosphamide (RR, 1.3; P = 0.004); and for pleurisy and chest radiation (RR, 1.4; P = 0.02) and busulfan (RR, 5.1; P = 0.02). Chest radiation was associated with a 3.5% cumulative incidence of lung fibrosis at 20 years after diagnosis. CONCLUSIONS: For self-report of pulmonary conditions, treatment-related factors that continue to manifest > 5 years after diagnosis and treatment are important determinants of risk. Continued follow-up of childhood cancer survivors is needed to evaluate the impact of pulmonary conditions on quality of life.     

Twenty years of follow-up of survivors of childhood osteosarcoma: a report from the Childhood Cancer Survivor Study

BACKGROUND:

Osteosarcoma survivors have received significant chemotherapy and have undergone substantial surgeries. Their very long‐term outcomes (20 year) are reported here.

METHODS:

The authors assessed the long‐term outcomes of 733 5‐year survivors of childhood osteosarcoma diagnosed from 1970 to 1986 to provide a comprehensive evaluation of medical and psychosocial outcomes for survivors enrolled in the Childhood Cancer Survivor Study (CCSS). Outcomes evaluated included overall survival, second malignant neoplasms (SMNs), recurrent osteosarcoma, chronic health conditions, health status (general and mental health and functional limitations), and psychosocial factors. Outcomes of osteosarcoma survivors were compared with general‐population statistics, other CCSS survivors, and CCSS siblings.

RESULTS:

Survivors had a mean follow‐up of 21.6 years. The overall survival of children diagnosed with osteosarcoma who survived 5 years at 20 years from original diagnosis was 88.6% (95% confidence interval [CI], 86.6%‐90.5%). The cumulative incidence of SMNs at 25 years was 5.4%, with a standardized incidence ratio of 4.79 (95% CI, 3.54‐6.33; P<.01). Overall, 86.9% of osteosarcoma survivors experienced at least 1 chronic medical condition, and >50% experienced ≥2 conditions. Compared with survivors of other cancers, osteosarcoma survivors did not differ in their reported general health status (odds ratio [OR], 0.9; 95% CI, 0.7‐1.2), but were more likely to report an adverse health status in at least 1 domain (OR, 1.9; 95% CI, 1.6‐2.2), with activity limitations (29.1%) being the most common.

CONCLUSIONS:

Childhood osteosarcoma survivors in this cohort did relatively well, considering their extensive treatment, but are at risk of experiencing chronic medical conditions and adverse health status. Survivors warrant life‐long follow‐up. Cancer 2011. © 2010 American Cancer Society.