期刊
JOURNAL OF PEDIATRIC GASTROENTEROLOGY AND NUTRITION
卷 57, 期 4, 页码 451-460出版社
LIPPINCOTT WILLIAMS & WILKINS
DOI: 10.1097/MPG.0b013e31829e0b65
关键词
feeding difficulties; gastrointestinal; growth; Rett syndrome
资金
- NHMRC [572568]
- NIH [NCRR U54 RR019478, U54 HD06122]
- International Rett Syndrome Foundation
- Rett Syndrome Association, UK
- National Institutes of Health [5R01HD043100-05]
- National Medical and Health Research Council (NHMRC) [303189]
Objectives:We developed recommendations for the clinical management of poor growth and weight gain in Rett syndrome through evidence review and the consensus of an expert panel of clinicians.Methods:Initial draft recommendations were created based upon literature review and 34 open-ended questions in which the literature was lacking. Statements and questions were made available to an international, multidisciplinary panel of clinicians in an online format and a Microsoft Word-formatted version of the draft via e-mail. Input was sought using a 2-stage modified Delphi process to reach consensus. Items included clinical assessment of growth, anthropometry, feeding difficulties and management to increase energy intake, decrease feeding difficulties, and consideration of gastrostomy.Results:Agreement was achieved on 101 of 112 statements. A comprehensive approach to the management of poor growth in Rett syndrome is recommended that takes into account factors such as feeding difficulties and nutritional needs. A body mass index of approximately the 25th centile can be considered as a reasonable target in clinical practice. Gastrostomy is indicated for extremely poor growth, if there is risk of aspiration and if feeding times are prolonged.Conclusions:These evidence- and consensus-based recommendations have the potential to improve care of nutrition and growth in a rare condition and stimulate research to improve the present limited evidence base.
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