Dietetic Outcomes in Home Parenteral Nutrition
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1 Dietetic Outcomes in Home Parenteral Nutrition Dr Alison Culkin Research Dietitian Intestinal Failure & Home Parenteral Nutrition St Mark s Hospital PENG Meeting November 2011
2 The Dietetic Outcomes Model
3 St Mark s HPN Clinic History Examination Biochemical Investigations Psychological Medical illness & QoL Fluid & nutrition: oral & parenteral Physical CVC & Behaviour change Haem & Micronutri homecare CVC Anthropometrics issues biochem ents Vitamins Urine sodium Symptom Incl drug history Thirst, SOB, oedema, urine frequency, diet Exit site, integrity, (tip position) Weight, BMI MAC, TSF, MAMC, grip strength FBC, ESR, U&E, LFT, Ca, Mg, PO4, CRP Ferritin, Zn, Se, Cu, Mn A, E, D, B12, folate
4 Chronic Intestinal Failure (CIF) Intestinal failure results from obstruction, dysmotility, surgical resection, congenital defect, or disease-associated loss of absorption and is characterised by the inability to maintain protein-energy, fluid, electrolyte, or micronutrient balance 1 Appropriate dietary advice can help: maximise intestinal absorption severe diarrhoea or unmanageable stoma/fistula output dehydration and oxalate kidney stone formation maintain or improve nutritional status dependency on home parenteral nutrition (HPN)/fluids 2 Previous work has shown patients have a poor knowledge 3
5 Aim To evaluate the effectiveness of an information booklet on patient s knowledge of the intestinal failure regime
6 Methods Patients with CIF were recruited to the study A series of baseline assessments were undertaken: knowledge nutritional intake (oral & HPN) intestinal output nutritional status quality of life
7 Patients Inclusion criteria aged 18 years clinically stable living at home able to take diet orally Exclusion criteria unable to complete food, fluid & output diary intestinal obstruction planned surgery other diet modifications previously received booklet
8 Assessment of Knowledge A questionnaire was devised to assess knowledge of the intestinal failure regimen
9 Assessment of Nutritional Intake Patients kept a 3-day diet diary recording food & fluid in household measures Energy, protein, fat, carbohydrate & fibre intake was determined 4 and values expressed as mean intake per day Volume & nutritional content of HPN recorded
10 Assessment of Intestinal Output a) Patients with intestinal continuity 5
11 Assessment of Intestinal Output b) Patients with an intestinal stoma 6
12 Assessment of Nutritional Status The following were determined by a single observer using standard techniques 7 : Weight Height Body mass index (BMI) Mid arm circumference (MAC) Triceps skin fold thickness (TST) Mid-arm muscle circumference (MAMC)
13 Quality of Life in HPN Assessment problematic - hard to differentiate between issues caused by underlying disease & HPN. Systematic review 8 found QoL comparable with or lower than patients on dialysis. Fatigue common (42-58%) and linked with poor sleep due to overnight infusion inducing nocturia. Patients report a desire for infusions and quality of life reduces with frequency of infusions. Common symptoms included loss of strength, weight loss, nausea & pain with a third experiencing anxiety and a quarter suffering clinically significant depression 9 Qualitative study found that a lack of education & knowledge regarding dietary advice was associated with poor compliance. Difficulty in obtaining information due to the lack of a dietitian as part of the care team 10
14 Assessment of Quality of Life SF-36 examines 8 aspects of life: Health perception Physical function Role-physical Role-emotional Social functioning Mental health Body pain Energy/fatigue ED-5Q (EuroQoL) measures health using: descriptive statements which generate a single numeric index a visual analogue scale (VAS) from 0 (worst) to 100 (best imaginable) Both have been used to assess quality of life in patients on HPN 11 Validated HPN questionnaire devised after study completed 12
15 An information booklet was given & explained with guidance tailored to individual patients, depending on clinical & nutritional status, intestinal anatomy & current oral intake Follow-up assessment was undertaken 3-6 months later Education
16 Patient Population (n=48) Mean age (years) 56.1 ± 13.4 Sex (M:F) 17:31 Time since CIF diagnosed (months) 82 ± 87 (0-367) Aetiology - Crohn s Disease - Mesenteric infarction - Surgical Complication - Radiation enteritis - Other 25 (52%) 12 (25%) 5 (10%) 3 (6%) 3 (6%) Artificial nutrition - HPN - Home parenteral fluids - Subcutaneous fluids - Oral nutritional supplements - Diet alone Intestinal anatomy - Jejunostomy - Ileostomy - Colostomy - Fistula - No stoma 33 (69%) 4 (8%) 2 (4%) 4 (8%) 5 (10%) 12 (25%) 15 (31%) 5 (10%) 1 (2%) 16 (33%)
17 Results - Knowledge The mean knowledge score for patients increased significantly after receiving the booklet (p<0.001) Men increased knowledge score more than women (p=0.068) No significant association observed between knowledge score & age (p=0.26) or time since diagnosis (p=0.22)
18 Results Nutritional Intake Variable Before After N Mean ± SD Mean ± SD P value Oral energy (kcal) ± ± Oral fat (g) ± ± HPN Energy (kcal) ± ± HPN Volume (ml) ± ± HPN Frequency (days) ± ± HPN Nitrogen* (g) (8, 11) 9 (7.9, 11) * Median (IQR)
19 Results Intestinal Output Before After n Mean ± SD Mean ± SD P value Patients with intestinal continuity ± ± Patients with an intestinal stoma ± ± Actual volume (ml) ± ±
20 Results Nutritional Status Variable Before After n Mean ± SD Mean ± SD P value Weight (kg) ± ± BMI (kg/m 2 ) ± ± Female TST (mm) ± ± MAMC (cm) 22.1 ± ± Male TST (mm) ± ± MAMC (cm) 24.4 ± ±
21 Results Quality of Life No significant improvement when all patients analysed In the subgroup of HPN patients improvements observed in ED-5Q index (p=0.007) & VAS (p=0.001) Patients who frequency of HPN infusions showed an improvement in ED-5Q index (p=0.006) & SF-36 physical functioning (p=0.03) compared to those who maintained frequency of infusions
22 Conclusion The study shows positive effect of ongoing education in stable CIF patients, which can result in clinical benefits including the reduction of HPN requirements.
23 Acknowledgements Dr Simon Gabe Dr Angela Madden Dr Kevin Whelan St Mark s Foundation BDA General & Education Trust Patients
24 Thank you
25 References 1. O'Keefe et al. (2006) Short bowel syndrome and intestinal failure: consensus definitions and overview. Clin Gastroenterol Hepatol, 4, 6 2. Jeppensen PB & Mortensen PB (2001). Dietary treatment of patients with a short bowel. In: Nightingale J. (ed), Intestinal Failure. London: Greenwich Medical Media Ltd, O Connor M et al (1988). An investigation into information provided for patients on home parenteral nutrition. J Clin Pharm Ther, 13: Nelson M et al. (1997) A photographic atlas of food portion sizes. London: MAFF 5. Whelan K et al (2004). Assessment of fecal output in patients receiving enteral tube feeding: validation of a novel chart. Eur J Clin Nutr, 58: O Donnell et al (1990). Detection of pseudodiarrhoea by simple clinical assessment of intestinal transit rate. BMJ, 300: Gurney JM, Jelliffe DB. (1973) Arm anthropometry in nutritional assessment:nomogram for rapid calculation of muscle circumference and cross sectional and fat areas. Am J Clin Nutr ;26: Huisman-de Waal et al (2007) The impact of home parenteral nutrition on daily life-a review. Clin Nutr, 26, Fortune et al (2005). Illness beliefs of patients on home parenteral nutrition (HPN) and their relation to emotional distress. Clin Nutr, 24, Silver (2004). The lived experience of home total parenteral nutrition: an outline qualitative inquiry with adults, children and mothers. Nutr Clin Pract, 19, Richards DM & Irving MH (1997). Assessing the quality of life of patients with intestinal failure on home parenteral nutrition. Gut, 40: Baxter et al (2008) The development and translation of a treatment-specific quality of life questionnaire for adult patients on home parenteral nutrition. e-espen, 3, e22
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