3.6.BPS1 Best practice statement
Individuals with Friedreich ataxia who are experiencing difficulties in swallowing should be…
Individuals with Friedreich ataxia who are experiencing difficulties in swallowing should be offered detailed expert counselling on dysphagia management strategies, with a focus on the specificities and mechanisms of dysphagia in degenerative ataxia, as well as their impact on the individual and their friends and families.
Part of 3.6 Dysphagia in Friedreich ataxia
References (7)
1. Keage MJ, Delatycki MB, Gupta I, Corben LA, Vogel AP. Dysphagia in Friedreich ataxia. Dysphagia. 2017;32(5):626-35.
2. Keage M, Delatycki MB, Dyer J, Corben LA, Vogel AP. Changes detected in swallowing function in Friedreich ataxia over 12 months. Neuromuscul Disord. 2019;29(10):786-93.
3. Vogel AP, Rommel N, Sauer C, Horger M, Krumm P, Himmelbach M, et al. Clinical assessment of dysphagia in neurodegeneration (CADN): development, validity and reliability of a bedside tool for dysphagia assessment. J Neurol. 2017;264(6):1107-17.
4. Takizawa C, Gemmell E, Kenworthy J, Speyer R. A systematic review of the prevalence of oropharyngeal dysphagia in stroke, Parkinson's disease, Alzheimer's disease, head injury, and pneumonia. Dysphagia. 2016;31(3):434-41.
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6. Vogel AP, Brown SE, Folker JE, Corben LA, Delatycki MB. Dysphagia and swallowing-related quality of life in Friedreich ataxia. J Neurol. 2014;261(2):392-9.
7. Keage M, Delatycki M, Corben L, Vogel A. A systematic review of self-reported swallowing assessments in progressive neurological disorders. Dysphagia. 2015;30(1):27-46.
Disclaimer, intended use and funding
Disclaimer
The Clinical Management Guidelines for Friedreich ataxia (‘Guidelines’) are protected by copyright owned by the authors who contributed to their development or said authors’ assignees.
These Guidelines are systematically developed evidence statements incorporating data from a comprehensive literature review of the most recent studies available (up to the Guidelines submission date) and reviewed according to the Grading of Recommendations, Assessment Development and Evaluations (GRADE) framework © The Grade Working Group.
Guidelines users must seek out the most recent information that might supersede the diagnostic and treatment recommendations contained within these Guidelines and consider local variations in clinical settings, funding and resources that may impact on the implementation of the recommendations set out in these Guidelines.
The authors of these Guidelines disclaim all liability for the accuracy or completeness of the Guidelines, and disclaim all warranties, express or implied to their incorrect use.
Intended Use
These Guidelines are made available as general information only and do not constitute medical advice. These Guidelines are intended to assist qualified healthcare professionals make informed treatment decisions about the care of individuals with Friedreich ataxia. They are not intended as a sole source of guidance in managing issues related to Friedreich ataxia. Rather, they are designed to assist clinicians by providing an evidence-based framework for decision-making.
These Guidelines are not intended to replace clinical judgment and other approaches to diagnosing and managing problems associated with Friedreich ataxia which may be appropriate in specific circumstances. Ultimately, healthcare professionals must make their own treatment decisions on a case-by-case basis, after consultation with their patients, using their clinical judgment, knowledge and expertise.
Guidelines users must not edit or modify the Guidelines in any way – including removing any branding, acknowledgement, authorship or copyright notice.
Funding
The authors of this document gratefully acknowledge the support of the Friedreich Ataxia Research Alliance (FARA). The views and opinions expressed in the Guidelines are solely those of the authors and do not necessarily reflect the official policy or position of FARA.