1. Measuring The Outcome of Nutritional Support in the Community Kirsty Hamilton Clinical Specialist Dietitian Adult Learning Disability Service NHS Tayside

2. Learning Outcomes Identify appropriate monitoring parameters for patients living in the community Describe the strengths and weaknesses of different parameters in nutritional monitoring Describe the outcome measures that can be used to show the benefits of enteral feeding in patients with profound and multiple learning disabilities(PMLD)

3. Why Monitor? To assess the effectiveness of nutritional support To minimise feeding related complications To demonstrate an improvement in quality of life with patients with PMLD

4. Monitoring Protocols Largely the result of experience No trials have prospectively investigated the diagnostic efficacy or cost-effectiveness of different monitoring protocols

5. Who is Responsible for Monitoring? In Tayside dietitians responsible for home enteral nutrition(HEN) ensure that appropriate monitoring is undertaken and review results of monitoring Advice is taken from other professionals as necessary

6. Self-monitoring …long-term nutritional support patients should be trained to recognise and respond to adverse changes in both their well-being and in the management of their nutritional delivery system Nutrition Support in Adults, NICE 2005

7. What is Monitored? Understanding of advice given re:administering feed, medication, home delivery system, care of enteral feeding tube Appropriateness of regimen including bowel function and urine output Condition of enteral feeding tube and site Medications are administered in an appropriate form

8. What is Monitored? Nutritional status Nutritional and fluid intake Appropriate biochemical parameters are measured

9. Bowel Function Diarrhoea is most common complication of enteral nutrition (Bowling and Silk, 1998) Frequently results in cessation of feeding Disagreement between nursing staff as to whether diarrhoea present in 25% of samples (Whelan et al, 2003) Standardised description of faecal characteristics www.kcl.ac.uk/stoolchart

10. Condition of Feeding Tube and Site Type and how long tube been in situ Ensure patient/carer is aware of parts of PEG that can be replaced If balloon type arrangements for replacement Daily care routine Is the site well healed,redness, discharge or swelling

11. Weight Requirement to have appropriate scales Use to assess hydration status and energy balance Can use MAC as surrogate (Powell-Tuck and Hennessy, 2003) If terminal condition weight not measured

12. Upper Arm Anthropometry CV in 3 observers 4.89% for TSF and 1.8% for MAC. Calculated that to confirm a true change in AMC, a change of at least 2.68cm was required. (Hall et al, 1980). Small changes in body fat (<0.5kg) cannot be measured by anthropometry (Heymsfield and Kasper, 1987) Appropriateness of reference ranges Use patient as own control

13. Nutritional and Fluid Intake Diet history or food record charts Incomplete recording common Difficult to determine nutritional value of texture modified diet How does volume of feed prescribed compare to actual intake

14. Nutritional and Fluid Requirements Nutritional and fluid intakes are based on weight Requirements are reassessed if weight has changed by ± 5% Schofield equations used as starting point to estimate energy requirements but modified according to clinical judgement

15. Energy Requirements in PMLD As many wheel chair bound often low but not always 840-1800 kcals Regular monitoring essential to ensure weight gain is not too rapid Start with small volumes of feed and very slowly increase Target weight needs to be agreed

16. Biochemical Parameters Monitoring should only be undertaken as appropriate to the individual and as clinically indicated Any biochemical abnormality during recent hospital admission Poor feed tolerance The presence of malabsorption The patient receiving additional electrolytes or vitamins

17. Clinical Condition in PMLD Chronic malnutrition Low body weight Poor nutrient and fluid intake Chronic fatigue, apathy and depression Constipation Frequent respiratory tract infections Poorly controlled epilepsy Miserable and sleep poorly

18. Outcome measures in PMLD Gain weight urine output and better bowel function No longer fatigued Reduced numbers of respiratory tract infections Epilepsy better controlled Happy and content Sleep better Improved concentration and attention span If safe to eat oral intake improves

19. Frequency of Monitoring Identify presence of factors likely to indicate need for monitoring: Clinical condition/treatment Tolerance of feed Condition of tube/site Change in oral intake Change in nutritional status

20. Impact of Monitoring on QoL In DM, home blood glucose monitoring has been shown to have an adverse effect on QoL, with higher levels of distress, worry, and depressive symptoms. Franciosi et al., 2001

28. Summary Outcome measures must relate to aims of nutritional support In PMLD subjective and quantitative measures are used Minimal requirement for acute care Benefits to the patients include : Minimising complications Nutritional requirements are more likely to be met