Dietetic Assessment of Children with Cystic Fibrosis

Transcription

1 Dietetic Assessment of Children with Cystic Fibrosis Prepared by: Scottish CF Paediatric Dietitians Group Lead Author: Elsie Thomson, Royal Aberdeen Childrens Hospital SPCF MCN dietetic protocols co-ordinator/editor: Alison Coates, Royal Hospital for Sick Children, Edinburgh Date: October 2012 Review date: October 2012

2 Scottish Paediatric Cystic Fibrosis Managed Clinical Network Protocols and Guidelines Dietetic Assessment Of Children with Cystic Fibrosis Introduction This protocol has been devised on behalf of the Scottish Paediatric Cystic Fibrosis MCN for use by dietitians and other health professionals working in Cystic Fibrosis (CF) care across Scotland. It is based on current evidence and best practice. It should be used in conjunction with the published CF Trust consensus documents: Standards for the Clinical Care of Children and Adults with CF in the UK, 2 nd Edition, Dec 2011 Nutritional Management of CF, April Individuals with CF who are well nourished have a better outcome (Steinkamp & Wiedemann 2002) and there is a strong link between lung function and nutritional status. Wasting (poor weight gain) and stunting (poor height gain) are independent predictors of mortality (Sharma et al 2001, Beker et al 2001). For these reasons regular and comprehensive nutritional assessment is essential. Summary of main points All children in Scotland with a diagnosis of CF should have their growth and nutrition regularly assessed and reviewed by a specialist paediatric dietitian with support from a specialist CF dietitian via the Scottish Paediatric CF MCN. No single test provides an accurate measure of nutritional status and therefore a variety of dietary, anthropometric, biochemical and clinical data should be used as a basis for evaluation. A full assessment should be carried out at least annually, preferably as part of the annual review. Infants and children under age of 2 should have an assessment at each visit. Aims of Dietetic Assessment To assess nutritional status and growth regularly To identify poor nutrition and faltering growth early To assess bone health To assess fat soluble vitamin status and relevant mineral levels To advise on prompt and timely interventions No single test provides an accurate measure of nutritional status and therefore a variety of dietary, anthropometric, biochemical and clinical data are used as a basis for evaluation.

3 Measurements of Nutritional Status Dietetic Assessment Children should have access to a specialist paediatric dietitian at each clinic visit and inpatient stay. Advice should be available from a specialist CF paediatric dietitian via the Scottish Paediatric CF MCN. At a dietetic assessment consideration should be given to the points in Table 1. A full assessment including all the points in Table 1 should be carried out at least annually, ideally as part of the annual review. Results should be discussed at a team meeting. The dietitian should advise on changes to treatment and nutritional goals for the following year. The dietitian should also input to the diagnosis and treatment plans for CF related diabetes (CFRD), CF liver disease (CFLD), gastrooesophageal reflux, low bone mineral density and surgical gut issues. Dietetic assessments should be undertaken more frequently in cases of faltering growth, if co-morbidities (e.g. CFRD/CFLD) exist and to assess the effect of dietary intervention. Infants and children up to the age of 2 should have a detailed assessment at every clinic visit. The specialist CF dietitian should be informed of all admissions for CF children and the reason for admission. A dietetic review can be provided as required, based on clinical judgement. All patients anticipated to have an inpatient stay of more than 2 days should have a dietetic assessment. Anthropometry Weight, height (length for 0-2 years) and head circumference (0-2 years) are measured and plotted at each clinic visit and inpatient episode on UK- WHO growth charts (2009) or UK Child Growth Foundation charts UK (1996) as appropriate. Weight is measured as a naked weight for children under the age of two and in light clothing without shoes thereafter. Note - growth results should be interpreted carefully in cases of delayed puberty. BMI is calculated and BMI centile plotted at least yearly at annual review for all children >2 years. There is some evidence that BMI centile predicts nutritional failure more sensitively than conventional weight and height measurements in children with CF (Lai 2006, Weidemann et al 2007). Also BMI percentiles at 2 years old are strongly associated with pulmonary function late childhood (Borowitz et al, 2009). For infants 0 2 years, % weight for height is calculated annually or if concerns.

4 In children with CF liver disease and others as appropriate (for example those who are enterally fed), skin fold thickness and MUAC measurements should be measured annually or if concerns regarding growth. Assessment of growth centiles, BMI centiles or % weight for height should be ongoing so that faltering growth can be identified and treated early. Stunted children (height centile over 2 centiles apart from weight centile or height < 0.4 th centile) should have height compared to mid parental height range. If below expected height, optimise nutritional intake and consider measuring bone age and referral to an endocrinologist. Note - these children may have a weight that is appropriate for their height. DEXA scan to assess Bone Mineral Density should be carried out from 10 years of age with serial measurements every 1-3 years, unless abnormal results are found whereby results will be discussed at a local bone health meeting. Biochemical measurements Annual measurement of vitamins, minerals and other nutritional screening bloods as per the Scottish Paediatric CF MCN protocol for annual review assessments protocol and as required to assess treatment changes. Annual glucose measurement or OGTT as per annual review protocol and consider glucose profile if starting enteral feeding or if unexplained deterioration in weight gain and /or lung function. Table 1 : Dietetic Assessment 1. Interpretation of available growth data 2. Assessment of dietary intake*, review of appetite, behavioural eating problems and adherence to individual dietary recommendations 3. Review of fibre and fluid intake 4. Review of salt intake /salt supplements 5. Assessment of calcium intake 6. Review of PERT dosing, bowel habit and adherence to therapy 7. Review of oral supplements and enteral feeding if appropriate 8. Review of CF related diabetes management if appropriate 9. Review of fat soluble vitamin status, dose, timing and adherence *This should be assessed at least yearly by a 3-day food and PERT diary or diet history or dietary recall.

5 References and Further Reading CF Trust consensus document: Standards for the Clinical Care of Children and Adults with CF in the UK, 2nd Edition, Dec _Care_2011_web.pdf CF Trust consensus document: Nutritional Management of CF, April nagement.pdf Clinical Paediatric Dietetics, 3rd Edition. Shaw & Lawson (2007) Australasian Clinical Practice Guidelines for Nutrition In Cystic Fibrosis (2006) Consensus report on nutrition for pediatric patients with cystic fibrosis. Journal of Pediatric Gastroenterology and Nutrition, 2002 CF Trust Consensus: Bone mineralisation in CF (2007) CF Trust Consensus document: Management of Cystic Fibrosis Related Diabetes Mellitis (2004) Scottish Paediatric CF MCN Protocol for annual review assessments: 5d%20SPCF%20MCN%20Protocol%20for%20annual%20review%20assessments% 20FINAL% doc SteinkampG, Weidemann B. Relationship between nutritional status and lung function in CF Thorax 2002; 57; Sharma R et al. Wasting as an independent predictor of mortality in patients with CF Thorax 2001; 56; Beker et al. Stature as a prognostic factor in CF survival. J Am Diet Assoc 2001; 101; Sharma R et al. Wasting as an independent predictor of mortality in patients with CF Thorax 2001; 56; Lai H. Classification of nutritional status in CF. Curr Opin Pulm Med 2006;12; Weidemann et al Evaluation of BMI percentiles for assessment of malnutrition in children with CF. Eur J Clin Nut 2007 ; 61; Borowitz et al. CF Foundation Evidence based guidelines for management of infants with CF. J of Pediatrics 2009, vol 155, supp 4.

6 Resources CF Trust Fact sheets: Nutrition A guide for Children and parents nd_parents_%28web%29_sept_2010.pdf Nutrition : A guide for feeding Infants _Infants_%28WEB%29_Sept_2010.pdf Cystic Fibrosis and bone health 11_%28web%29.pdf Cystic Fibrosis related diabetes _for_web_%28sept_2010%29.pdf