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Health care for individuals with fragile X Syndrome: Understanding access and quality.
Wheeler, Anne C; Wylie, Amanda; Villagomez, Adrienne; Bishop, Ellen; Raspa, Melissa.
Afiliación
  • Wheeler AC; RTI International 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA. Electronic address: acwheeler@rti.org.
  • Wylie A; RTI International 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA.
  • Villagomez A; Children's Hospital Colorado, Anschutz Medical Campus, 13123 East 16th Avenue, Aurora, CO, 80045, USA.
  • Bishop E; RTI International 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA.
  • Raspa M; RTI International 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA.
Disabil Health J ; 12(2): 269-277, 2019 04.
Article en En | MEDLINE | ID: mdl-30442576
BACKGROUND: Previous research suggests that individuals with intellectual or developmental disabilities (IDD) may experience challenges accessing quality health care. OBJECTIVE/HYPOTHESIS: This study explored parent perceptions of access and quality of health care services for children with fragile X syndrome (FXS), the leading hereditary cause of intellectual/developmental disabilities. METHODS: Nearly 600 primary caregivers of at least one child with FXS completed an online survey on access, barriers, and quality of health care for their family member with FXS (N = 731). RESULTS: In a convenience sample of well-educated and affluent caregivers, the majority did not report experiencing difficulties with access to services. Caregivers of younger children and those with lower family incomes reported greater challenges with health care access. Nearly 40% of caregivers indicated that their child's PCP was not as knowledgeable about FXS-related needs as they would prefer, indicating a possible knowledge gap on the part of providers. CONCLUSIONS: These factors represent potential barriers to quality health care for individuals with FXS, with potential lifelong effects ranging from delayed age of diagnosis to difficulty accessing a PCP in adulthood.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Padres / Calidad de la Atención de Salud / Discapacidades del Desarrollo / Cuidadores / Personas con Discapacidad / Síndrome del Cromosoma X Frágil / Accesibilidad a los Servicios de Salud Aspecto: Determinantes_sociais_saude Límite: Adolescent / Adult / Child / Child, preschool / Female / Humans / Male Idioma: En Revista: Disabil Health J Asunto de la revista: REABILITACAO / SAUDE PUBLICA / SERVICOS DE SAUDE Año: 2019 Tipo del documento: Article Pais de publicación: Estados Unidos
Texto completo
Añadir a Mi BVS
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Padres / Calidad de la Atención de Salud / Discapacidades del Desarrollo / Cuidadores / Personas con Discapacidad / Síndrome del Cromosoma X Frágil / Accesibilidad a los Servicios de Salud Aspecto: Determinantes_sociais_saude Límite: Adolescent / Adult / Child / Child, preschool / Female / Humans / Male Idioma: En Revista: Disabil Health J Asunto de la revista: REABILITACAO / SAUDE PUBLICA / SERVICOS DE SAUDE Año: 2019 Tipo del documento: Article Pais de publicación: Estados Unidos