ROLE OF THE DIETITIAN. Aims of Dietetic Treatment NUTRITIONAL ISSUES WHY? MALNUTRITION NUTRITONAL MANAGEMENT OF MOTOR NEURONE DISEASE.

Transcription

1 NUTRITONAL MANAGEMENT OF MOTOR NEURONE DISEASE. ROLE OF THE DIETITIAN SALLY DARBY NEUROLOGY DIETITIAN Not just tube feeding Referral soon after diagnosis Advise on healthy eating for MND Monitor nutritional status NUTRITIONAL ISSUES Aims of Dietetic Treatment Malnutrition is an independent, prognostic factor for survival in MND patients 16-21% found to be moderately to severely malnourished A 5% weight loss can worsen prognosis Patients with bulbar onset are no more likely to be malnourished than those with limb onset. Worwood & Leigh 1998 Prevent weight loss Reduce aspiration risk in conjunction with SLT Minimise effects of malnutrition Minimise risk of dehydration Support patient and family in decision making and then managing the outcome of this. MALNUTRITION WHY? Decrease muscle strength Decreased organ function Increased fatigue Decreased mental function, depression, apathy Decreased respiratory function Inadequate intake Dysphagia Constipation Psychological issues - depression Physical difficulties / psychosocial distress Polypharmacy Increase requirements 1

2 ENERGY REQUIREMENTS Studies Generalised hypermetabolic state of as yet unknown origin found in many Requirements may be increased by at least 10% Independent of respiratory status, spasticity, fasciculation intensity or infection (Desport et al 2001) Men seem more prone to hypercatabolism Mechanically ventilated patients found to have higher than expected EE and those without a lower EE (Sherman et al 2004) Small study showed high fat and carbohydrate intakes may improve survival rates in gastrostomy fed patients NICE guidelines suggest research into whether a high calorie diet will prolong survival if initiated following diagnosis or at initiation of gastrostomy feeding SUPPLEMENTS INADEQUATE INTAKE Use once weight starts to drop Useful to take pressure off meal times Any type of benefit if acceptable to patient Milk based v juice based v pudding style Varying flavours and brands helps prevent flavour fatigue Intakes of calories proven to be lower than estimated requirements Over reporting of intake and the minimising of difficulties are common issues Still following standard healthy eating guidelines Worried higher weight may affect mobility DYSPHAGIA Texture Modification Avoidance of particular food groups Constraints of texture modification Appearance of texture modified food Patients can self limit intake Effort involved Negative correlation with severity of dysphagia and weight loss and calorie intake Terminology to describe textures will alter over next 12 months 2

3 PSYCHOLOGICAL ISSUES PHYSICAL DIFFICULTIES Depression Fear of choking Embarrassment especially in social situations Fun aspect of eating gone Feeling nagged May need assistance with eating and drinking Accepting being fed Unable to shop or prepare foods Can t access snacks or drinks without assistance, limited to 3 meals per day, this can a be a big issues in those reliant on a package of care DIETARY ADVICE Thickened Fluids Higher calorie diet from diagnosis Use normal products not diet Regular snacks Nourishing drinks Vitamins and minerals from food sources Only use under guidance of Speech and Language Therapist Terminology now stage 1, 2 or 3 but in process of changing Pre thickened supplements now available Flavoured, cold drinks work best Constipation Thick Tenacious Saliva Weakness of pelvic floor and abdominal muscles Reduced mobility Ensure adequate fluids May need to try several types of laxative Consider what is normal Consider how much is actually eaten Do not push large volumes of fibre this also applies when tube feeding Ensure adequate fluids DO NOT advise avoidance of dairy products Suggest sips of water after a dairy containing drink to remove residue if practical Apple, grapefruit, cranberry and pineapple juice may thin saliva 3

4 Alternative Diets PEG Internet opens up a range of information High calorie is promoted Gluten free Avoiding monosodium glutamate Deanna Protocol 24 different supplements although 6 are classed as most important Ketogenic diet Vegan I resisted PEG, I wanted to fight the disease and not accept defeat. I believed that liquid food through a tube couldn t be as beneficial as a healthy diet. This proved to be wrong on both counts. I was surprised at the ease of the process. By removing so much stress, my friendly PEG has greatly improved quality of life for me and my loved ones. TRIGGERS FOR A PEG / PIGG ProGas Study 2015 Decreased intake, not enjoying food Dehydration Aspiration pneumonia Frequent choking Progressive weight loss, >10% Anxiety ay meal times Exhaustion due to laboured eating PEG, RIG and PIGG as safe as each other in relation to survival and complications Two main factors affecting survival post gastrostomy were age and higher weight loss Increased mortality at 1 month increased if more than 10% weight loss Gastrostomy had a neutral effect on QoL at 3months Strain on carers was increased at 3 months post insertion POSITIVE ASPECTS ISSUES TO CONSIDER Adequate hydration and nutrition Steady weight Give medications via PEG/PIGG Possible decreased aspiration risk Decreased burden and stress Quality of life??? Increases survival Psychological impact Method of feeding Who can administer feed PoC issues Willingness / ability of carers to offer assistance Prolong life but not halt illness May be a point when can t have a tube window of opportunity Burden outweighs benefit Provision of support if decide not to proceed 4

5 RESPIRATION AND PEG BEFORE HAVING A PEG / PIGG Studies show if FVC < 50% predicted increased risk If VC >50% risk of death in first month post PEG is small PEG without sedation or PIGG Patients and carers should be fully informed Be aware of all pros and cons Have written information Have received practical advice on feeding options Have seen a PEG / PIGG Definitely have seen a dietitian What is a PIGG? Per Oral Imaged Guided Gastrostomy Currently tube of choice at NBT Use a standard 15Fr Freka gastrostomy Useful if reduced respiratory function Outcome currently appears to have been positive Able to arrange in 2-4 weeks from referral Support MND Care Centre Dietetics Currently dietitian available at both MND clinics at Southmead Will offer telephone and support Limited access to community services in some areas for dietitians Wheelchair scales soon to be available at clinic PIGG normally at Southmead so will coordinate care with ward dietitians 5

6 CONCLUSIONS Early dietetic referral encouraged Monitor weight and percentage weight lost Regular monitoring of oral intake and swallow is essential and should be done by all members of MDT Use supplements as necessary Introduce idea of a gastrostomy early Ensure adequate education and counselling Ensure gastrostomies are placed appropriately 6