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Background: Adolescent survivors of childhood cancer are more vulnerable to the consequences of health risk behaviors because of the late effects of their disease and its treatment. Decision making related to risk behaviors is important as they have reached an age during which initiation of substance use risk behavior is common. Objective: Factors associated with decision making and substance use behaviors (smoking, alcohol use, and illicit drug use) were identified among adolescent survivors of childhood cancer, the role of cognitive function was examined, and their rates of substance use behaviors were compared to a sample from the general population. Methods: A cohort of 243 adolescent survivors, ages 14-19 years, participated who were recruited from three cancer centers (St. Jude Children's Research Hospital, Hackensack University, and Long Beach Medical Center). A cross-sectional survey was used to assess cognitive and psychosocial factors for a presenting clinical profile to predict quality decision making and substance use behaviors. Validated measures using online data entry were obtained at the time of their annual visit for evaluation of late effects of treatment. Cancer and treatment factors were abstracted from the medical record. Eight factors (nine for substance use risk behavior) were examined in two regression models, quality decision making and substance use. Results: In the model to predict poor-quality decision making for this cohort, gender and risk motivation (a surrogate for resiliency to social influence) were each significant predictors, with male gender and less resiliency each associated with poor decision making. Significant predictors of lifetime substance use were older presenting age, lower resiliency to social influence, poorer abstract ability (representing executive function impairment), history of current school problems, and negative substance use risk behavior modeling by household members and closest friend; CNS-associated late effects were only marginally associated. For current substance use, three factors remained significant in this cohort: older presenting age, lower resiliency, and negative risk behavior modeling. Implications for Cancer Survivors: Study results characterize a presenting clinical profile for adolescent survivors with poor-quality decision making regarding substance use risk behaviors that will be helpful to health professionals counseling teen survivors about the impact of risk behaviors on disease-and treatment-related late effects. [ABSTRACT FROM AUTHOR]

Background Policy and research related to transition to adult care for adolescents and young adults (AYAs) has focused primarily on patient age, disease skills and knowledge. Objective In an effort to broaden conceptualization of transition and move beyond isolated patient variables, a new social-ecological model of AYA readiness for transition (SMART) was developed. Methods SMART development was informed by related theories, literature, expert opinion and pilot data collection using a questionnaire developed to assess provider report of SMART components with 100 consecutive patients in a childhood cancer survivorship clinic. Results The literature, expert opinion and pilot data collection support the relevance of SMART components and a social-ecological conceptualization of transition. Provider report revealed that many components, representing more than age, disease knowledge and skills, related to provider plans for transferring patients. Conclusions SMART consists of inter-related constructs of patients, parents and providers with emphasis on variables amenable to intervention. Results support SMART's broadened conceptualization of transition readiness and need for assessment of multiple stakeholders' perspectives of patient transition readiness. A companion measure of SMART, which will be able to be completed by patients, parents and providers, will be developed to target areas of intervention to facilitate optimal transition readiness. Similar research programmes to establish evidence-based transition measures and interventions are needed. [ABSTRACT FROM AUTHOR]

Background: Gonadal damage is a consequence of therapy for pediatric malignancies. Prepubertal males have no semen or mature spermatozoa, posing a challenge for fertility preservation. Testicular tissue cryopreservation is a potential option but is still experimental. We report on a pilot protocol that offered testicular biopsy cryopreservation to families of prepubertal boys with newly diagnosed malignancy. The aims were to determine the acceptability and safety of this procedure.Methods: Parents of prepubertal boys with diagnoses at highest risk for treatment-related gonadal damage were offered the option of testicular cryopreservation. Half of the biopsy was frozen for the subject's potential future use and the remainder used for research. Data on negative intraoperative and/or 7 day post-operative sequelae of testicular biopsies were assessed. Two to four weeks later, parents were asked to complete a questionnaire on factors influencing their decision to have the biopsy or not.Results: Since January 2008, 24 boys have met the eligibility criteria but three required immediate treatment and were excluded. Sixteen of 21 families (76%) consented to testicular biopsy, indicating the prospective acceptability of this option to parents of boys aged 3 months to 14 years; 14 underwent the procedure without any negative intra- or post-operative sequelae. Although the time at diagnosis is stressful, families can give thoughtful consideration to this option. Factors such as religion, finance, ethics and the experimental nature of cryopreservation did not play a major role in decision-making.Conclusions: Parents of prepubertal boys with cancer are willing to pursue testicular tissue cryopreservation at diagnosis, and testicular biopsy caused no acute adverse effects. [ABSTRACT FROM AUTHOR]

Context: Adult survivors of childhood cancer are at risk for medical and psychosocial sequelae that may adversely affect their health status.Objectives: To compare the health status of adult survivors of childhood cancer and siblings and to identify factors associated with adverse outcomes.Design, Setting, and Participants: Health status was assessed in 9535 adult participants of the Childhood Cancer Survivor Study, a cohort of long-term survivors of childhood cancer who were diagnosed between 1970 and 1986. A randomly selected cohort of the survivors' siblings (n = 2916) served as a comparison group.Main Outcome Measures: Six health status domains were assessed: general health, mental health, functional status, activity limitations, cancer-related pain, and cancer-related anxiety/fears. The first 4 domains were assessed in the control group.Results: Survivors were significantly more likely to report adverse general health (odds ratio [OR], 2.5; 95% confidence interval [CI], 2.1-3.0; P<.001), mental health (OR, 1.8; 95% CI, 1.6-2.1; P<.001), activity limitations (OR, 2.7; 95% CI, 2.3-3.3; P<.001), and functional impairment (OR, 5.2; 95% CI, 4.1-6.6; P<.001), compared with siblings. Forty-four percent of survivors reported at least 1 adversely affected health status domain. Sociodemographic factors associated with reporting at least 1 adverse health status domain included being female (OR, 1.4; 95% CI, 1.3-1.6; P<.001), lower level of educational attainment (OR, 2.0; 95% CI, 1.8-2.2; P<.001), and annual income less than 20 000 dollars (OR, 1.8; 95% CI, 1.6-2.1; P<.001). Relative to those survivors with childhood leukemia, an increased risk was observed for at least 1 adverse health status domain among those with bone tumors (OR, 2.1; 95% CI, 1.8-2.5; P<.001), central nervous system tumors (OR, 1.7; 95% CI, 1.5-2.0; P<.001), and sarcomas (OR, 1.2; 95% CI, 1.1-1.5; P =.01).Conclusion: Clinicians caring for adult survivors of childhood cancer should be aware of the substantial risk for adverse health status, especially among females, those with low educational attainment, and those with low household incomes. [ABSTRACT FROM AUTHOR]

Working as specialists in a changing environment, advanced practice nurses in pediatric oncology (APN-POs) benefit from specific pediatric oncology education. The graduates of a pediatric nurse practitioner program in pediatric oncology completed a survey about their educational experience and its impact on their current practice. This practitioner program included a subspecialty education in pediatric oncology and an early form of distance learning. The respondents' answers parallel a number of emerging themes in APN-PO practice and education. Employing distance learning methods in providing subspecialty education holds important implications for future APN-PO education and practice and for the health care of communities throughout the country. Copyright © 2001 by W.B. Saunders Company [ABSTRACT FROM AUTHOR]

Late effects of multi-modality treatments may result in organ compromise or new primary cancers for a growing population of long-term survivors of cancer. It is estimated that there will be 180,000-220,000 childhood cancer survivors living in the United States in the year 2000. This number of survivors warrants program planning specific to their needs. Add to this the number of patients diagnosed with cancer as adults who have reached 5-year survival status, and the total population of long-term survivors of cancer justifies special programs to deal with the issues of survivorship. This paper addresses several questions: (a) What are the needs of cancer survivors? (b) Can these needs be met through specialty survivor clinics? (c) What are the benefits of survivor follow-up clinics? (d) Should survivor clinics for children and adults become standard care? The clinic structure and objectives, and daily procedures for a follow-up clinic in New York State are presented as one model of care. Benefits for a free-standing clinic also are discussed as well as financial considerations and directions for research. [ABSTRACT FROM AUTHOR]

BACKGROUND: The success in developing curative therapy for pediatric malignancies permits evaluation of cancer-related sequelae and their effect on the health status of long-term survivors. Numerous studies have demonstrated that cancer and its treatment predispose to a variety of medical and psychosocial sequelae that may adversely affect health status. OBJECTIVE: We evaluated clinical and treatment factors predisposing to poor health outcomes of adults participating in the Childhood Cancer Survivor Study (CCSS). METHODS: Health status was assessed in 9535 adult participants of the CCSS. The CCSS is a retrospective cohort study of individuals diagnosed with childhood cancer between 1970 and 1986, under age 21, and surviving ≥5 y. A randomly selected cohort of the survivors' siblings (N = 2916) served as a comparison group. Six health status domains were assessed: general health, mental health, functional status, activity limitations, cancer-related pain, and cancer-related anxiety and fears. The first 4 domains were assessed in the control group. Multivariate analyses were used to determine the odds ratio (OR) and 95% confidence intervals (CI) associated with health outcomes reported by self-administered questionnaire. RESULTS: The mean age at interview for survivors was 26.8 y (range 18-48). The mean age at cancer diagnosis was 10.0 y (range 0.1-21.0), with a mean interval from diagnosis to completion of questionnaire of 17.4 y (range 6-29). The cohort included 53% male and 87.4% white, non-Hispanic survivors. Primary cancer diagnoses comprised leukemia, Hodgkin's disease, central nervous system tumor, bone tumor, soft tissue sarcoma, non-Hodgkin's lymphoma, Wilms' tumor, and neuroblastoma. Survivors were significantly more likely to report adverse general (OR = 2.5; 95% CI, 2.1-3.0) and mental health (OR = 1.8; 95% CI, 1.6-2.1), activity limitations (OR = 2.7; 95% CI, 2.3-3.3), and functional impairment (OR = 5.2; 95% CI, 4.1-6.6) compared with siblings. Although only 10.9% of survivors reported fair or poor general health, 44% reported at least one adversely affected health status domain. Sociodemographic factors associated with reporting at least one adverse health status domain included: female gender (OR = 1.4; 95% CI, 1.3-1.6), lower level of educational attainment (OR 2.0; 95% CI, 1.8-2.2), and annual income <$20,000 (OR = 1.8; 95% CI, 1.6-2.1). Relative to those with childhood leukemia, risk for at least one adverse health status domain was elevated among those with bone tumors (OR = 2.1; 95% CI, 1.8-2.5), central nervous system tumors (OR = 1.7; 95% CI, 1.5-2.0), and sarcomas (OR = 1.2; 95% CI, 1.1-1.5). CONCLUSION: Clinicians caring for adult survivors of childhood cancer should be aware of the substantial risk for adverse health status, especially among females, those with low educational attainment, and those with low household incomes. Primary care providers should anticipate health problems in these clinical and sociodemographic groups when evaluating adults with a history of childhood cancer and be prepared to address physical and psychosocial sequelae adversely affecting health status. [ABSTRACT FROM AUTHOR]