Gastrointestinal Dysmotility in Rett Syndrome
Objectives: Through evidence review and the consensus of an expert panel, we developed recommendations for the clinical management of gastroesophageal reflux disease, constipation, and abdominal bloating in Rett syndrome.Methods: Based on review of the literature and family concerns expressed on Ret...
| Main Authors: | , , , , , , , , , , |
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| Format: | Journal Article |
| Published: |
Lippincott Williams & Wilkins
2013
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| Online Access: | https://journals.lww.com/jpgn/toc/2014/02000 http://hdl.handle.net/20.500.11937/21838 |
| Summary: | Objectives: Through evidence review and the consensus of an expert panel, we developed recommendations for the clinical management of gastroesophageal reflux disease, constipation, and abdominal bloating in Rett syndrome.Methods: Based on review of the literature and family concerns expressed on RettNet, initial draft recommendations were created. Wherein the literature was lacking, 25 open-ended questions were included. Input from an international, multidisciplinary panel of clinicians was sought using a 2-stage modified Delphi process to reach consensus agreement. Items related to the clinical assessment and management of gas troesophageal reflux disease, constipation, and abdominal bloating.Results: Consensus was achieved on 78 of 85 statements. A comprehensive approach to the assessment of gastroesophageal reflux and reflux disease, constipation, and abdominal bloating was recommended, taking into account impairment of communication skills in Rett syndrome. A stepwise approach to the management was identified with initial use of conservative strategies, escalating to pharmacological measures and surgery, if necessary.Conclusions: Gastrointestinal dysmotility occurs commonly in Rett syndrome. These evidence- and consensus-based recommendations have the potential to improve care of dysmotility issues in a rare condition and stimulate research to improve the present limited evidence base. |
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