14 research outputs found

    Stakeholder validation of a model of readiness for transition to adult care

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    IMPORTANCE: That too few youth with special health care needs make the transition to adult-oriented health care successfully may be due, in part, to lack of readiness to transfer care. There is a lack of theoretical models to guide development and implementation of evidence-based guidelines, assessments, and interventions to improve transition readiness. OBJECTIVE: To further validate the Social-ecological Model of Adolescent and Young Adult Readiness to Transition (SMART) via feedback from stakeholders (patients, parents, and providers) from a medically diverse population in need of life-long follow-up care, survivors of childhood cancer. DESIGN: Mixed-methods participatory research design. SETTING: A large Mid-Atlantic children's hospital. PARTICIPANTS: Adolescent and young adult survivors of childhood cancer (n = 14), parents (n = 18), and pediatric providers (n = 10). MAIN EXPOSURES: Patients and parents participated in focus groups; providers participated in individual semi-structured interviews. MAIN OUTCOMES AND MEASURES: Validity of SMART was assessed 3 ways: (1) ratings on importance of SMART components for transition readiness using a 5-point scale (0-4; ratings >2 support validity), (2) nominations of 3 “most important” components, and (3) directed content analysis of focus group/interview transcripts. RESULTS: Qualitative data supported the validity of SMART, with minor modifications to definitions of components. Quantitative ratings met criteria for validity; stakeholders endorsed all components of SMART as important for transition. No additional SMART variables were suggested by stakeholders and the “most important” components varied by stakeholders, thus supporting the comprehensiveness of SMART and need to involve multiple perspectives. CONCLUSIONS AND RELEVANCE: SMART represents a comprehensive and empirically validated framework for transition research and program planning, supported by survivors of childhood cancer, parents, and pediatric providers. Future research should validate SMART among other populations with special health care needs

    Minority Adult Survivors of Childhood Cancer: A Comparison of Long-Term Outcomes, Health Care Utilization, and Health-Related Behaviors From the Childhood Cancer Survivor Study

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    PURPOSE: To determine the influence of race/ethnicity on outcomes in the Childhood Cancer Survivor Study (CCSS). PATIENTS AND METHODS: Of CCSS adult survivors in the United States, 443 (4.9%) were black, 503 (5.6%) were Hispanic and 7,821 (86.6%) were white. Mean age at interview, 26.9 years (range, 18 to 48 years); mean follow-up, 17.2 years (range, 8.7 to 28.4 years). Late mortality, second malignancy (SMN) rates, health care utilization, and health status and behaviors were assessed for blacks and Hispanics and compared with white survivors. RESULTS: Late mortality rate (6.5%) and 15-year cumulative incidence of SMN (3.5%) were similar across racial/ethnic groups. Minority survivors were more likely to have lower socioeconomic status (SES); final models were adjusted for income, education, and health insurance. Although overall health status was similar, black survivors were less likely to report adverse mental health (females: odds ratio [OR], 0.6; 95% CI, 0.4 to 0.9; males: OR, 0.5; 95% CI, 0.3 to 0.8). Differences in health care utilization and behaviors noted: Hispanic survivors were more likely to report a cancer center visit (females: OR, 1.5; 95% CI, 1.1 to 2.0; males: OR, 1.7; 95% CI, 1.2 to 2.3); black females were more likely (OR, 1.6; 95% CI, 1.1 to 2.4), and Hispanic females less likely to have a recent Pap smear (OR, 0.7; 95% CI, 0.5 to 1.0); black and Hispanic survivors were less likely to report smoking; black survivors were less likely to report problem drinking. CONCLUSION: Adjusted for SES, adverse outcomes in CCSS were not associated with minority status. Importantly, black survivors reported less risky behaviors and better preventive practices. Hispanic survivors had equitable access to cancer related care

    Plant growth, biomass partitioning and soil carbon formation in response to altered lignin biosynthesis in Populus tremuloides

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    We conducted a glasshouse mesocosm study that combined 13C isotope techniques with wild-type and transgenic aspen (Populus tremuloides) in order to examine how altered lignin biosynthesis affects plant production and soil carbon formation. Our transgenic aspen lines expressed low stem lignin concentration but normal cellulose concentration, low lignin stem concentration with high cellulose concentration or an increased stem syringyl to guaiacyl lignin ratio. Large differences in stem lignin concentration observed across lines were not observed in leaves or fine roots. Nonetheless, low lignin lines accumulated 15-17% less root C and 33-43% less new soil C than the control line. Compared with the control line, transformed aspen expressing high syringyl lignin accumulated 30% less total plant C - a result of greatly reduced total leaf area - and 70% less new soil C. These findings suggest that altered stem lignin biosynthesis in Populus may have little effect on the chemistry of fine roots or leaves, but can still have large effects on plant growth, biomass partitioning and soil C formation. © The Authors (2007)
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