Journal article
Experience of gastrostomy using a quality care framework: The example of rett syndrome
J Downs, K Wong, M Ravikumara, C Ellaway, EJ Elliott, J Christodoulou, P Jacoby, H Leonard
Medicine United States | LIPPINCOTT WILLIAMS & WILKINS | Published : 2014
Abstract
Rett syndrome is one of many severe neurodevelopmental disorders with feeding difficulties. In this study, associations between feeding difficulties, age, MECP2 genotype, and utilization of gastrostomy were investigated. Weight change and family satisfaction following gastrostomy were explored.Data from the longitudinal Australian Rett Syndrome Database whose parents provided data in the 2011 family questionnaire (n = 229) were interrogated. We used logistic regression to model relationships between feeding difficulties, age group, and genotype. Content analysis was used to analyze data on satisfaction following gastrostomy.In those who had never had gastrostomy and who fed orally (n = 166/2..
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Awarded by Eunice Kennedy Shriver National Institute of Child Health and Human Development
Funding Acknowledgements
The Australian Rett Syndrome Unit (APSU) is affiliated with a unit of the Division of Paediatrics and Child Health, Royal Australasian College of Physicians, and is funded by the Department of Health and Ageing, the National Health Medical Research Council (NHMRC), and the Australian Research Council. The Australian Rett Syndrome Research Program has been funded by the National Institutes of Health (5R01HD043100-05) and an NHMRC project grant (#303189), and is currently supported by an NHMRC project grant (#1004384) and an NHMRC program grant (#572742). The current funding for HL is from an NHMRC Senior Research Fellowship #572568. The work of EJE is supported by an NHMRC Practitioner Fellowship #457084.