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  • Nutritional status of patients with Ataxia-Telangiectasia: A case for early and ongoing nutrition support and intervention

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    Author(s)
    Ross, Lynda J
    Capra, Sandra
    Baguley, Brenton
    Sinclair, Kate
    Munro, Kate
    Lewindon, Peter
    Lavin, Martin
    Griffith University Author(s)
    Ross, Lynda J.
    Year published
    2015
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    Abstract
    Aim: Ataxia‐telangiectasia (A‐T) is a rare genomic syndrome resulting in severe disability. Chronic childhood disorders can profoundly influence growth and development. Nutrition‐related issues in A‐T are not well described, and there are no nutritional guidelines. This study investigated the nutrition‐related characteristics and behaviours of Australian A‐T patients attending a national clinic. Methods: A cross‐sectional analysis of 13 A‐T patients (nine females; aged: 4–23 years): nutritional status was assessed by anthropometric and body cell mass (BCM) calculations. Parents reported their child's diet history and physical ...
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    Aim: Ataxia‐telangiectasia (A‐T) is a rare genomic syndrome resulting in severe disability. Chronic childhood disorders can profoundly influence growth and development. Nutrition‐related issues in A‐T are not well described, and there are no nutritional guidelines. This study investigated the nutrition‐related characteristics and behaviours of Australian A‐T patients attending a national clinic. Methods: A cross‐sectional analysis of 13 A‐T patients (nine females; aged: 4–23 years): nutritional status was assessed by anthropometric and body cell mass (BCM) calculations. Parents reported their child's diet history and physical and behavioural factors that affect nutrition including fatigue and need for assistance. Results: Ten (77%) had short stature (height for age z scores <−1), and seven (54%) were underweight for height (weight/height z scores <−1). Significant malnutrition (BCM z scores <−2) was detected in nine (69%) including the one adult who was severely malnourished. Malnutrition increased significantly with age (BCM for height z scores and age, r = −0.937, P < 0.001). Eight (62%) patients ate poorly compared with estimated energy requirement for weight. Poor diet quality was characterised by high fat and sugar choices. Parents reported significant nutritional barriers as chronic tiredness and the need for care giver assistance with meals. Conclusions: This study confirms profound malnutrition in Australian A‐T patients. Poor intakes and diet quality suggest the need for early nutrition intervention. Ongoing support for families and early discussions on tube feeding are required to address changing needs in childhood and likely nutritional decline into adulthood. A prospective study is required to assess feasibility and effectiveness of nutrition interventions in young people with A‐T.
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    Journal Title
    Journal of Paediatrics and Child Health
    Volume
    51
    Issue
    8
    DOI
    https://doi.org/10.1111/jpc.12828
    Copyright Statement
    © 2015 Paediatrics and Child Health Division (Royal Australasian College of Physicians). This is the peer reviewed version of the following article: Nutritional status of patients with ataxia‐telangiectasia: A case for early and ongoing nutrition support and intervention, Journal of Paediatrics and Child Health, Volume51, Issue8, August 2015, Pages 802-807, which has been published in final form at https://doi.org/10.1111/jpc.12828. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving (http://olabout.wiley.com/WileyCDA/Section/id-828039.html)
    Subject
    Clinical sciences
    Nutrition and dietetics not elsewhere classified
    Publication URI
    http://hdl.handle.net/10072/171697
    Collection
    • Journal articles

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