Development of a comprehensive health-related needs assessment for adult survivors of childhood cancer.

PURPOSE: Examine the construct validity, stability, internal consistency, and item-response performance of a self-report health needs assessment for adult survivors of childhood cancer. METHODS: A 190-item mailed survey was completed by 1,178 randomly selected (stratified on age, diagnosis, time since diagnosis) Childhood Cancer Survivor Study participants (mean age, 39.66 [SD 7.71] years; time since diagnosis, 31.60 [SD 4.71] years). Minorities and rural residents were oversampled at a 2:1 ratio. RESULTS: The final instrument included 135 items comprising nine unidimensional subscales (Psycho-emotional, Health System Concerns, Cancer-Related Health Information, General Health, Survivor Care and Support, Surveillance, Coping, Fiscal Concerns, and Relationships). Confirmatory factor analysis (n = 1,178; RMSEA = 0.020; 90 % CI = 0.019-0.020; CFI = 0.956; TLI = 0.955) and person-item fit variable maps established construct validity. Across subscales, Cronbach's alpha was 0.94-0.97, and the 4-week test-retest correlations were 0.52-0.91. In a Rasch analysis, item reliability was 0.97-0.99, person reliability was 0.80-0.90, and separation index scores were 2.00-3.01. Significant subscale covariates of higher need levels included demographics, diagnosis, and treatment exposures. CONCLUSIONS: The Childhood Cancer Survivor Study Needs Assessment Questionnaire (CCSS-NAQ) is reliable and construct-valid, has strong item-response properties, and discriminates need levels. IMPLICATIONS FOR CANCER SURVIVORS: The CCSS-NAQ potentially can be used to: (1) directly assess adult childhood cancer survivors' self-reported health-related needs, (2) identify individuals or subgroups with higher-level needs, (3) inform prevention and direct intervention strategies, and (4) facilitate prioritization of health-care resource allocation.

Obesity in survivors of childhood acute lymphoblastic leukemia and lymphoma.

PURPOSE: We evaluated the long-term effects of treatment on the body mass index (BMI) of children with acute lymphoblastic leukemia (ALL) or lymphoblastic lymphoma who received one of three CNS-directed therapies: intrathecal methotrexate with intravenous high-dose methotrexate (1 g/m2), intrathecal methotrexate with 18 Gy cranial radiation, or intrathecal methotrexate with 24 Gy cranial radiation. PATIENTS AND METHODS: Between 1979 and 1984, 456 children with newly diagnosed ALL and lymphoma were enrolled onto a single protocol at St Jude Children's Research Hospital (Memphis, TN). The heights and weights of 422 of the children were measured at diagnosis, during treatment, at the end of therapy, and approximately every 6 to 12 months thereafter. Patients who had attained their adult height at the time of analysis (n = 248) were placed in weight categories based on their BMI, BMI percentile, or weight-for-length percentile depending on age. RESULTS: The overall percentage of survivors who were overweight or obese approximated rates prevalent in the general population of the United States. Young age (< 6 years) and overweight/obesity at diagnosis were the best predictors of obesity at adult height. The rate of BMI increase did not differ significantly between children who received radiation and those who did not, nor between patients who received 18 or 24 Gy of cranial radiation. CONCLUSION: BMI weight category at diagnosis, rather than type of CNS treatment received, predicted adult weight in long-term survivors of childhood hematologic malignancies.

Cumulative incidence of secondary neoplasms as a first event after childhood acute lymphoblastic leukemia.

CONTEXT: Little is known about the incidence of secondary neoplasms after 15 to 20 years in children and adolescents who were treated for acute lymphoblastic leukemia. OBJECTIVES: To investigate the cumulative incidence of secondary neoplasms in pediatric patients treated for acute lymphoblastic leukemia over 30 years and to characterize late-occurring tumors. DESIGN, SETTING, AND PATIENTS: Retrospective study of 2169 patients with acute lymphoblastic leukemia treated between 1962 and 1998 at St Jude Children's Research Hospital, Memphis, Tenn, who achieved complete remission and had a median follow-up time of 18.7 years (range, 2.4-41.3 years). MAIN OUTCOME MEASURES: Cumulative incidences of secondary neoplasms in first remission and standard incidence ratios of observed rates compared with rates of cancer development in the general US population. RESULTS: Secondary neoplasms developed as the first event in 123 patients and comprised 46 myeloid malignancies, 3 lymphomas, 14 basal cell carcinomas, 16 other carcinomas, 6 sarcomas, 16 meningiomas, and 22 other brain tumors. The cumulative incidence of secondary neoplasm was 4.17% (SE, 0.46%) at 15 years and increased substantially after 20 years, reaching 10.85% (SE, 1.27%) at 30 years. When meningiomas and basal cell carcinomas were excluded, the overall cumulative incidence was 3.99% (SE, 0.44%) at 15 years and 6.27% (SE, 0.83%) at 30 years, representing a 13.5-fold increase in overall risk compared with the general population. The cumulative incidence of each tumor type at 30 years was 2.19% (SE, 0.32%) for myeloid malignancy, 0.17% (SE, 0.10%) for lymphoma, 3.00% (SE, 0.59%) for brain tumor, 4.91% (SE, 1.04%) for carcinoma, and 0.57% (SE, 0.37%) for sarcoma. CONCLUSIONS: The cumulative incidence of secondary neoplasms increases steadily over 30 years after treatment of acute lymphoblastic leukemia. Although the majority of the late-occurring secondary neoplasms are low-grade tumors, the increase in incidence of more aggressive malignant neoplasms is significantly higher than expected in the general population. These results suggest that lifelong follow-up of acute lymphoblastic leukemia survivors is needed to ascertain the full impact of treatment and other leukemia-related factors on secondary neoplasm development.

Thyroid carcinoma presenting in childhood or after treatment of childhood malignancies: An institutional experience and review of the literature.

BACKGROUND/PURPOSE: Thyroid carcinomas can occur as a primary malignancy (PTM) or secondary after another malignancy (STM). Information about the presentations and outcomes of patients with STM are limited. The authors sought to compare the clinical characteristics, course, and outcomes of patients with primary or secondary thyroid malignancies. METHODS: The authors reviewed the medical records of 8 children with PTM and 17 children with STM referred to St Jude Children's Research Hospital between February 1962 and February 2002 for evaluation and treatment of malignant thyroid carcinoma. RESULTS: The 8 children who had primary thyroid carcinoma had it diagnosed at a median age of 12.5 years (range, 7.3 to 16.3 years). Seven patients had papillary carcinoma, and 1 patient had follicular carcinoma. Three of the 8 (37.5%) had metastatic disease involving regional lymph nodes; 2 patients (25.0%) had lung metastases. Six patients required radioactive iodine (I 131) ablation for residual or metastatic disease after surgical resection. All 8 patients remain alive a median of 22.6 years after diagnosis (range, 0.7 to 30.5 years); 1 continues to receive radioactive iodine (I 131) ablation for persistent disease. Seventeen patients had thyroid carcinoma as a second malignant neoplasm after treatment for acute lymphoblastic leukemia (n = 6), Hodgkin's disease (n = 5), central nervous system tumor (n = 2), Wilms' tumor (n = 1), retinoblastoma (n = 1), non-Hodgkin's lymphoma (n = 1), or neuroblastoma (n = 1). Patients with secondary thyroid carcinoma presented at a median age of 21.5 years (range, 15.3 to 42.6 years), a median of 16.2 years (range, 0.9 to 29.2 years) after diagnosis of the primary cancer. Twelve of the 17 patients (70.6%) had received radiation to the thyroid gland during therapy for the primary cancer. Four patients (23.5%) had metastatic disease involving regional lymph nodes. Six patients (35.3%) required I(131) ablation for residual or metastatic disease after thyroidectomy. At the time of this report, all 17 patients are alive and in continue to be free of disease. CONCLUSIONS: Pediatric thyroid carcinoma is uncommon and responds well to current therapy. Given the limited period of follow-up of our cohort of secondary malignant thyroid tumors that arise after childhood cancer, these lesions appear to have similar presentations and outcomes when compared with primary carcinomas and can therefore be managed in the same manner.