1. Training and monitoring patients on home parenteral nutrition (HPN) Learning objectives –Understand the importance of training and monitoring patients on home parenetral nutrtion –Learn about common practice on training and monitoring Summary Home parenteral nutrition is a lifesaving treatment for patients with chronic intestinal failure. It is a complex, expensive treatment with risk of serious complications, that can be prevented if the patients are given the relevant knowledge and technical skills (1). When discharged from hospital with HPN, patients will need to be monitored in order to cope with the problems arising. Most often, monitoring of anthropometry and biochemistry is carried out by the specialised teams in hospital at intervals of about 3 months for the stable patient (2). Studies of training and monitoring practice are needed. Refrences, links Slide from course Santarpia et al, Clin Nutr (PDF file) Slide from course 1.Santarpia et al, Clin Nutr 2.Slides from course

2. Training patients for HPN Training objectives The European practice Selection of patients for HPN The teaching program How to teach the patients ? Where are patients trained for HPN? Monitoring the skills Guidelines Conclusions

3. Training objectives Patients or relatives able to manage procedures safely Learn about complications and how to handle Low rate of complications To obtain the best quality of life

4. Teaching practice in Europe Questionnaire based study 51 centres in 7 countries Range 0-95 patients on HPN, 63 % of centres < 10 patients Contraindication criteria Teaching Guidelines Home parenteral nutrition (HPN) teaching practice in Europe A. Micklewright. A.A. Prins, F. Bozzett!2, X. Hebuterne, J.M. Moreno Villares, M. Pertkiewicz, L. Pironi, M. Staun, P. Thul A. Van Gossum and the HAN-W group, Clin Nutr 2002; 21, 42, abstract.

5. Selection of patients for HPN Criteria to exclude patients in 62 % of centres –Intellect (33%) –Physical disability (24 %) –Social situation, education (25%) –Underlying disease (18%) –Age (16%) Home parenteral nutrition (HPN) teaching practice in Europe A. Micklewright. A.A. Prins, F. Bozzett!2, X. Hebuterne, J.M. Moreno Villares, M. Pertkiewicz, L. Pironi, M. Staun, P. Thul A. Van Gossum and the HAN-W group, Clin Nutr 2002; 21, 42, abstract.

6. The teaching program The European survey reported the following: Catheter care (100%) Preventing and recognising complications (98%) Most common mistakes (92%) Pump care (92%) Managing complications (90%) Adding vitamins (55%) Bag preparation (50%) Intravenous medication (50%) Home parenteral nutrition (HPN) teaching practice in Europe A. Micklewright. A.A. Prins, F. Bozzett!2, X. Hebuterne, J.M. Moreno Villares, M. Pertkiewicz, L. Pironi, M. Staun, P. Thul A. Van Gossum and the HAN-W group, Clin Nutr 2002; 21, 42, abstract.

7. The impact of HPN training Group A –Oral instruction, two sessions ’hands on’ –91 port-a-cath, 26 tunnelled cath. Group B –Detailed instruction theoretical and practical, written material etc –68 port-a-cath, 45 tunnelled cath Fewer infections in B (p<0.001) Santarpia L, Pasanisi F, Alfonsi L, et al. Clin Nutr. 2002;21:207-11.

8. How to teach the patients ? Written manuals with photographic instructions Videotapes Interactive programs –‘HPN-school’ with demonstrations, hands on and exercises by patients/relatives and community nurses –PC-based ?

10. Teaching the patient in the ward

11. Where are the patients trained for HPN? At the ward of the discharging hospital –Involving the nutrition team –By far the most common procedure according to survey data At home –By the team as an outgoing service –By a home care agency

12. Monitoring skills Aim –Quality of life –Reduce rate of complications Monitoring skills –When readmitted –Periodic surveys –Following the occurrence of complications

13. Guidelines training The survey showed –96% of centres had guidelines for training –26 % had local guidelines –Guidelines based on national standards in some centres Home parenteral nutrition (HPN) teaching practice in EuropeA. Micklewright. A.A. Prins, F. Bozzett!2, X. Hebuterne, J.M. Moreno Villares, M. Pertkiewicz, L. Pironi, M. Staun, P. Thul A. Van Gossum and the HAN-W group, Clin Nutr 2002; 21, 42, abstract.

14. Training conclusions Practice varies between centres –Training at hospital / home Current practice based on local experience and guidelines Prospective studies of different training regimens are warranted

15. Monitoring patients on HPN Monitoring goals Monitoring practice of HPN patients in Europe Guidelines Conclusions

16. Why monitoring HPN patients ? Quality of life Manage complications –Line infections –Mechanical problems –Thrombosis –Metabolic problems –Depression, social life

17. Monitoring practice in Europe Questionnaire based study in 2002 42 centres in 8 countries Experience 2-30 years, 0-125 patients 934 patients, 90% non-malignant disease, 54% on HPN > 1 year Wengler, A. Micklewright, X. Hebuterne, F. Bozzetti, M. Pertkiewicz, J. Moreno, L. Pironi, P. Thul, A. Van Gossum and M. Staun and The ESPEN HAN Working Group. Clin Nutr 2003;22:s87

18. Where HPN patients are monitored The specialised unit monitored 73% Local hospital 12% GP 11% Home care agency 4%

19. Which personnel are responsible for the monitoring process ? Responsibility was assigned to one person in 90 % of centres Physician 60% Nurse 33%

20. Intervals between monitoring visits 60% of centres at 3 months intervals 25% at 0-1 month interval 15% at longer intervals

21. Clinical parameters monitored 0 10 20 30 40 50 Body weight Body temp. Blood press Pulse Hydration Oral intake Mood Parameters evaluated at monitoring visits. No. centres Every visit Not at every visit Only in case of problems No inform

22. Biochemical parameters monitored 0 10 20 30 40 50 Haematology Liver funct s-crea/K/Na s-Ca/Mg/Ph s-glucose s-chol/trig s-alb. Trace elements Vit AED,B12 BMD No. centres Every visit Not at every visit Only in case of problems No inform

23. Who will the patients get in touch with in case of problems ? 0 5 10 15 20 25 30 35 HPN-team Outpatient clinic Local Hospital Training Hospital Community Nurse GP Pharmaceutical company Home Care Agency No. centres Always Usually Occasionally Never

24. Guidelines monitoring HPN No official European guidelines available The 2002 survey on monitoring: –66% of centres had some kind of guidelines –Centres had used input from National health board or clinical nutrition society –Locally developed guidelines most common Wengler, A. Micklewright, X. Hebuterne, F. Bozzetti, M. Pertkiewicz, J. Moreno, L. Pironi, P. Thul, A. Van Gossum and M. Staun and The ESPEN HAN Working Group. Clin Nutr 2003;22:s87

25. Summary and conclusion for monitoring HPN Monitoring usually at discharging hospital –Access to specialised team Intervals between visits vary, being on average 3 months –The unstable patient needs more attention Biochemistry, anthropometry at all visits –Trace elements, vitamins and BMD occasionally Official guidelines for monitoring not available –Prospective studies warranted