15 research outputs found

    The Future of the Multidisciplinary Clinic

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    The multidisciplinary clinic is the accepted model for health care delivery related to spina bifida. This article focuses on the factors affecting multidisciplinary care delivery and future challenges for multidisciplinary programs

    Children’s Health Care Providers and Health Care Quality Measurement

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    High Density SNP Screen in A Large Multiplex Neural Tube Defect Family Refines Linkage to Loci at 7p21-Pter And 2q33.1-35

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    Neural tube defects (NTDs) are considered complex with both genetic and environmental factors implicated. To date, no major causative genes have been identified in humans despite several investigations. The first genomewide screen in NTDs (Rampersaud et al. 2005) demonstrated evidence of linkage to chromosomes 7 and 10. This screen included forty-four multiplex families and consisted of 402 microsatellite markers spaced approximately 10 cM apart. Further investigation of the genomic screen data identified a single large multiplex family, pedigree 8776, as primarily driving the linkage results on chromosome 7

    Sexuality Issues in Adolescents with a Chronic Neurological Condition

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    Substantial progress in the medical treatment of individuals with spina bifida (SB) has increased the numbers who survive into adolescence and adulthood. However, sexual health in this population has not received much attention. This study explored the knowledge (SB Sexuality Knowledge Scale), worries (SB Worries Scale), romantic appeal (from Harter's Self-Perception Scale), and access to sexuality information of a sample of 60 adolescents from a midwestern state. Study participants reported having sexual feelings like their peers, and they knew they could contract sexually transmitted diseases (STDs) if they were sexually active. However, only a moderate percentage was aware that women with SB are fertile, that adolescent women with SB should take a multivitamin with folic acid, and that latex-free condoms should be used by most adolescents with SB. They did not worry about their ability to make friends; however, these adolescents reported low levels of perceived romantic appeal and they worried about sexuality issues. These sexuality issues were not correlated to measures of SB neurological severity. Although over 50% reported having discussed sexuality with a health professional, 29% reported no one discussed sexuality and SB with them. Data from this study can affect the way health care providers and educators conduct sexuality education in health care and school settings
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