Journal article

Experience of Gastrostomy Using a Quality Care Framework: The Example of Rett Syndrome

Jenny Downs, Kingsley Wong, Madhur Ravikumara, Carolyn Ellaway, Elizabeth J Elliott, John Christodoulou, Peter Jacoby, Helen Leonard

MEDICINE | 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=166/229..

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Grants

Awarded by National Institutes of Health


Awarded by NHMRC


Awarded by EUNICE KENNEDY SHRIVER NATIONAL INSTITUTE OF CHILD HEALTH &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.