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Direct linkYoung, Deidra; Bebbington, Ami; de Klerk, Nick; Bower, Carol; Nagarajan, Lakshmi; Leonard, Helen – Research in Autism Spectrum Disorders, 2011
This study aimed to investigate the trajectories over time of health status and health service use in Rett syndrome by mutation type. Data were obtained from questionnaires administered over 6 years to 256 participants from the Australian Rett Syndrome Database. Health status (episodes of illness and medication load) and health service use…
Descriptors: Health Services, Genetic Disorders, Access to Health Care, Questionnaires
Hendrie, Delia; Bebbington, Ami; Bower, Carol; Leonard, Helen – Research in Autism Spectrum Disorders, 2011
This study measured use and cost of health sector and related services in Rett syndrome and effects of socio-demographic, clinical severity and genetic factors on costs. The study population consisted of individuals with Rett syndrome registered with the Australian Rett Syndrome Database in 2004. Descriptive analysis was used to examine patterns…
Descriptors: Residential Care, Age Differences, Genetic Disorders, Females
Urbanowicz, Anna; Downs, Jenny; Bebbington, Ami; Jacoby, Peter; Girdler, Sonya; Leonard, Helen – Research in Autism Spectrum Disorders, 2011
This study assessed factors that could influence equipment and respite services use among Australian families caring for a girl/woman with Rett syndrome and examined relationships between use of these resources and the health of female caregivers. Data was sourced from questionnaires completed by families (n=170) contributing to the Australian…
Descriptors: Mothers, Physical Health, Caregivers, Respite Care
