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Action Duchenne Conference 2015 Nutrition and Dietary Advice Angela Reddy Senior Specialist Dietitian Lane Fox Respiratory Unit St Thomas’ Hospital Guys and St Thomas’ Foundation Trust Lane Fox Respiratory Unit Specialists in Chronic Respiratory Care Est. 1989 Varied: both sides of the nutritional spectrum >5 yrs loss ambulation and steroids 1 yr Healthy-eating Dietary advice > 14/5 yrs 20 yrs onwards Weight increasing dietary advice Tracey Davis, Specialist Dietitian, GOSH Introduction • Nutrition is a critical part of long term DMD management • Both malnutrition and obesity are harmful to respiratory function • Overweight/obesity (BMI of more than 25kg/m2) Impedes breathing and increases the work of the respiratory muscles/Spinal jackets become too tight/Decreased mobility/Increased difficulty for carers to lift Introduction • Malnutrition is acknowledged as a predictor of adverse outcomes in patients with neuromuscular diseases (BTS, 2002) • Malnutrition is a key feature of chronic respiratory disease • It adversely affects respiratory muscles, reducing muscle mass and strength • It additionally affects immune function, wound healing, sensitivity to oxygen prolonging ventilator weaning and psychosocial function • Poor nutritional status is associated with non invasive ventilation (NIV) failure. Child with DMD >5 yrs loss ambulation and steroids 1 yr Healthy-eating Dietary advice Nutrition advice Overweight in DMD • Weight increase tends to coincide with • Loss of ambulation • Steroid therapy (effects on appetite) • Around 8 - 12 years of age • What causes one to become overweight? • Energy balance: Energy in = energy out • Increased appetite (steroids) • Reduced mobility • Always difficult to lose weight ESPECIALLY if mobility affected Therefore, prevention better than cure! • Tracey Davis, Specialist Dietitian, GOSH Overweight in DMD • Parents/carers/family can help • Can become pro-active in preventing excessive weight gain • How? • By following a “healthy eating” diet Tracey Davis, Specialist Dietitian, GOSH Healthy Eating Meat & Alternatives Starchy Foods Vegetables & Fruit Traditional Meal Unhealthy meal proportions Meat & Alternatives Starchy Foods Vegetables & Fruit Healthy ‘Balanced’ Meal Changing the proportions of food in this way leads to a healthier meal Meat & Alternatives Starchy Foods Vegetables & Fruit Weight Reducing Meal Changing the proportions in this way will reduce energy intake, help you lose weight, but allow you to eat the same volume of food Tracey Davis, Specialist Dietitian, GOSH Hidden fats 1 pat = 5g High Fat Products Low Fat Alternatives 2 sausages, pork (fried) 4 fish fingers (grilled) 60g chocolate bar Crunchie bar 60g nuts (large handful) 60g raisins Tracey Davis, Specialist Dietitian, GOSH Hidden sugars 1 cube = 5g of sugar Small bowl of Frosties Small bowl of All-Bran 1 slice Victoria Sponge 1 currant bun 8 oz tinned fruit in syrup 8 oz tinned fruit in juice Tracey Davis, Specialist Dietitian, GOSH Healthy Eating • Low glycaemic index (GI) food • Ranks how carbohydrate rich food affects blood levels • Slowly absorbed food have a low GI rating. • Keeps you fuller for longer Barley Fruit Yam/ Sweet Potato Barley Basmati Rice Slowly absorbed starchy food Porridge, oats based cereals, All Bran and Sultana Bran Beans & Lentils Pasta & Noodles Wholegrain Bread (Bread with ‘bits’ i.e. Pumpernickel or granary) Tracey Davis, Specialist Dietitian, GOSH Adolescent/Adult with DMD 1 yr 20 yrs onwards > 14/15 years Weight increasing dietary advice Underweight or malnutrition • Malnutrition or protein-energy malnutrition A condition of decreased body stores of protein and energy (calorie) furl stores – i.e. lean body mass and fat mass In developed countries disease is the principal cause • Nutritional intake may be compromised due to the inflammation imposed by the chronic disease • This loss of LBM associated with inflammation and functional impairment is considered disease related malnutrition – a significant problem in respiratory and neurological disease Underweight or malnutrition • Malnutrition common in DMD adults • Protein energy malnutrition is classified: As a body mass index (BMI) of less than 18.5 kg/m2 Unintentional weight loss of greater than 10% A BMI of less than 20 kg/m2 and unintentional weight loss of greater than 5% within the last 3-6 months (NICE, 2006) • BMI of less than 20kg/m2-commonly used in clinical practice • Malnutrition is common in hospitalised patients and associated with poor outcomes Effects of malnutrition Feeding and nutritional problems are common • Chewing fatigue • Prolonged meal times accompanied by drooling and spilling • Dysphagia and aspiration • Inadequate nutritional intake • Weight loss as disease progresses • Constipation • Gastric and intestinal dilatation • Gastro-oesophageal reflux • Timely consideration of gastric tube feeding is necessary Malnutrition risk • Nutritional needs or requirements (protein and energy) are increased During illness and infection Surgery Increased work of breathing • In clinics and on the ward, we screen patients (weight, weight loss, eating less than normal) to detect those with or at risk of malnutrition • Early identification is essential to provide help and correct nutritional issues Assessment of nutritional status • Assessment of nutritional status provides information on severity and causes of malnutrition Low body weight/reduced total fat/decreased muscle mass Anthropometry % Weight loss Low energy or protein intakes Biochemical Clinical conditions What can we do? • Prevent weight loss/aid weight gain via manipulation of the diet Increase frequency of consumption of nutrient-dense snacks Plus encourage milky drinks/condensed soups Try 3 meals plus 2-3 snacks Increase nutrient density of foods • Fortifying foods • Adding nutrients e.g., fats/add protein to food • Add multivitamins such as Forceval soluble • Avoid low calorie drinks e.g., tea/coffee • Prevent weight loss/aid weight gain via nutritional supplements Not as a meal replacement, but in addition to normal intake • High calorie high protein supplements Fortisip Compact Protein has 300kcal and 18g protein in 125ml (60ml x 2 shots) Fresubin 2kcal has 400kcal, 20 g protein in 200ml Scandishake has 600kcal, 12 g protein (250ml) – can add ice cream, strawberries and liquidise High calorie drinks – juice based in 200ml High calorie fat supplements such as Calogen, Procal in 30ml shots x 3 per day Use supplements in recipes • Regular preventative nutritional therapy recommended • Prevent weight loss/aid weight gain via enteral nutrition Short or long term Via Nasogastric tube or gastrostomy Might aim to meet 100% of requirements in initial stage of feeding Transition to oral feeding in short term enteral feeding Laxatives Prokinetic agents Monitor! Monitor! Monitor! • Admission and weekly nutritional screening • Weights: weekly on the ward or in clinic • Intake - if adequate nutritional intake on food charts • Bowels!! • Fluids • Vomiting • Nutritional requirements • Fatigue • Meal timing • NG and gastrostomy care • Daily MDT Gastrostomy or PEG feeding • It is a feeding tube inserted through the stomach wall into the abdomen for the purpose of nutrition support • Can be done using an endoscope, and is referred to as a percutaneous endoscopic gastrostomy (PEG) • A PEG might be required due to the common nutritional problems mentioned above • It is there to support normal eating and not to replace it • People report feeling very excited – that they can eat what they enjoy at mealtimes and at their own pace – Eating and gaining weight • It is frequently used to take medications and additional water • Feed regimens are varied and is designed to suit the individual • Some people prefer overnight feeding whilst some prefer daytime or bolus feeding or combination of both • Different types of gastrostomy tubes such as, low profile devices sit flush with the stomach and is not noticeable under the clothes • All discreet When do we insert gastrostomy feeding tubes? Retrospective Study of Nutritional Status and Outcomes in DMD with Chronic Respiratory Failure To assess the nutritional risk status of adult patients with DMD and chronic respiratory failure and to investigate its association with hospital outcomes over a 12-month period Methods • Retrospective case series study using hospital records • Nutritional parameters: weight body mass index (BMI) feeding route (enteral or oral) • Hospital outcome measures: cumulative length of hospital stay (LOS) ventilator adherence (hours) frequency of admission forced vital capacity (FVC) mortality RESULTS Clinical Variable Data available (n) Mean ± SD /Median (IQR) Age (years) 79 21 (19-24) Current weight (kg) 68 57 ± 16 Baseline weight (kg) 55 53.4 (52.3-62.7) Weight change 55 0 ± 1.2 BMI (kg/m2) 34 21.9 (17.3-24.8) • 30/79 (38%) were oral fed and 24/79 (30%) were PEG fed Clinical Variable Data available (n) Mean ± SD /Median (IQR) LOS (days) 79 2 (0-14) Infection episodes 34 0 (0-1) FVC (L) 46 1.2 (1.3) Time on respiratory support (hours) 59 10 (8.1-17) Enteral tube fed patients (n=30) had a greater admission risk compared to oral (n=49) fed patients Age (years) Current weight (kg) Baseline weight (kg) BMI (kg/m2) Annual LOS (days) Total admissions Chest Sepsis Episodes Ventilator time (hours) FVC (L) Enteral Oral P value 23.5 (20,25) 21.7 (19,23) 0.06 52 (18) 61 (14.5) 0.03* 45 (35, 67) 61 (51, 71) 0.02* 21 (15, 24) 23 (19, 26) 0.2 11 (0,36) 0.5 (0,8) 0.004* 2.0 (0, 3) 1.0 (0, 2) 0.03* 1 (0,1) 0 (0,1) 0.04* 14.0 (10, 24) 8.9 (6, 12) 0.001* 0.5 (0.4, 0.7) 0.9 (0.6, 2.0) 0.001* • Weight in patients admitted to hospital was less than those nonadmitted patients • Admission risk was greater in the underweight (BMI<20kg/m2) or overweight (BMI>25kg/m2) patient groups compared to normal BMI patients • There was an association between weight and feeding method: - patients with higher weights were associated with decreased risk of enteral feeding - Enteral feeding was associated with an increased non-invasive ventilator use per day and LOS Conclusion • Malnutrition is a potentially neglected clinical area in this cohort of patients with incomplete recording of nutritional data • Weight was associated with adverse outcomes in DMD – Overweight and underweight patients were more likely to be admitted than those with a normal body habitus – Patients who are enterally fed had a greater admission risk, infective episodes and LOS than orally fed patients, indicative of disease severity • Future prospective research to assess nutritional status and hospital outcomes is recommended • Regular nutritional monitoring and intervention may improve patient outcome Where do we insert gastrostomy feeding tubes? Lane Fox Approach • Currently – Assessed in outpatients by doctor, transitional NMD specialist, nurse and dietitian – Weighed at each visit (in wheelchair) – Focus on feeding issues and malnutrition – Assessed as inpatient only by SLT – PEG tubes inserted on the unit by Lane Fox Gastrostomy Insertion Team (Lane Fox Consultant, Gastroenterology Consultant, Anesthetic Consultant) – 4 insertions per month • New – Dietitian part of outpatient assessment team – To screen and identify those requiring aggressive nutritional support – Develop care pathway for nutritional support in DMD Gastrostomy Feeding - When and Where? • Enteral feeding is initiated when adequate oral nutritional cannot be safely accomplished • There is a need for early assessment for gastrostomy insertion and guidelines for insertion in adult DMD • Early insertion of feeding tubes should be considered as this may potentially reduce the risks associated with enteral feeding • Further studies are required to establish the optimum time to initiate enteral feeding Are there guidelines to help? • • • • Action Duchenne Treat NMD Muscular Dystrophy Campaign Some guidelines for DMD, however – Adequate nutritional status described as weight to age ratio or BMI for age from the 10th to the 85th on national percentile charts – Gastrostomy is recommended when weight and hydration can no longer be met by oral means – Managing complications in adults is acknowledged but recommendations are centred on children (Bushby et al, 2010) – Nutrition is highlighted as a critical aspect of long-term DMD care – Emphasises lack of reliable evidence exploring malnutrition and nutritional assessment in adults – Lack of nutritional consensus and practice guidelines is highlighted – Limited evidence examining gastrostomy feeding (American Thoracic Society, 2004) Constipation • Increase sources of fibre, which – – – – Alleviates constipation Has a bulking action Holds water – increasing stool weight Facilitates bowel regularity • Sources - wholegrain foods such as oats, seeds (linseeds/flaxseeds), potato skins, lentils, pulses, fruit with edible seeds, vegetables (beans, cauliflower, courgette, celery, peas) • Oats and linseeds do not produce gas/do not bloat • Increase fluid to at least 6 – 8 glasses per day Novel foods • Co-Enzyme Q10 • Vitamin-like substance in the mitochondria or the “powerhouse” of the cell • No proven use for strengthening muscles in DMD: Cooperative International Neuromuscular Research Group pilot trial only muscle strength, but numbers very small (12/13 completed) Not controlled study! Tracey Davis, Specialist Dietitian, GOSH Novel foods • Creatine • Role - supplies energy to body via increasing ATP (energy) formation • Weak evidence in MD - no evidence it increases muscle strength • The Cochrane review (Kley, Vorgerd and Tarnopolskyonly, 2007) included 1 study in patients with MD. • We do not know the dose, how long to give it for and after effects. • Very little research into its effectiveness and safety – not recommended Overall conclusion • Malnutrition common • Referral • Food –> nutritional supplement drinks –> enteral feeding • Monitor! Monitor! Monitor! • Regular preventative recommended nutritional therapy is Any Questions?