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Can home parenteral nutrition be provided by non-specialised centres? 2300 weeks of experience at a district general hospital in the United Kingdom
ARTICLE IN PRESS Clinical Nutrition (2005) 24, 229–235
http://intl.elsevierhealth.com/journals/clnu
ORIGINAL ARTICLE
Can home parenteral nutrition be provided by non-specialised centres? 2300 weeks of experience at a district general hospital in the United Kingdom Dennis A. Freshwater, Abdulrahman Saadeddin, Penny Deel-Smith, Tim Digger, Barry J.M. Jones Department of Gastroenterology and Nutrition, Russells Hall Hospital, Dudley DY1 2HQ, West Midlands, UK Received 2 March 2004; accepted 20 September 2004
Summary Background & aims: Home Parenteral Nutrition (HPN) is an accepted treatment of intestinal failure but is mostly restricted to a few large specialist centres in the UK. The provision of high-quality HPN is of paramount importance to patients with intestinal failure, but its restriction to large specialist centres limits the number of patients who can receive it. The study aim was to determine if HPN can be effectively administered in a non-specialist centre. Methods: Adult HPN patients at a single District General Hospital in the United Kingdom were analysed by indications, complications and outcome. Results: 2310 patient weeks of HPN were provided to 23 patients, aged 18–80 years with intestinal failure. Catheter infection rate was 0.315 per patient year, with one patient excluded due to persistent nasal digitation. Patients spent 89.96% of their time at home and 82.6% achieved a Karnowsky Index of 70 (generally selfcaring or greater). Conclusions: HPN can be practised at non-specialist District General Hospital level achieving complication rates comparable to large specialist centres, and this lends weight to the argument for a network model to widen provision beyond large tertiary referral specialist centres in the United Kingdom. & 2004 Elsevier Ltd. All rights reserved.
KEYWORDS Home parenteral nutrition; Intestinal failure; Catheter sepsis
Introduction Corresponding
author.
Tel.:
+441384 456074;
+441384 244262. E-mail addresses: [email protected] (D.A. Freshwater), [email protected] (A. Saadeddin), [email protected] (B.J.M. Jones).
fax:
Home parenteral nutrition (HPN) has become established as the main treatment for chronic intestinal failure. Throughout Europe, there are numerous models of HPN provision. In Denmark, there are two national centres. In France there are
0261-5614/$ - see front matter & 2004 Elsevier Ltd. All rights reserved. doi:10.1016/j.clnu.2004.09.015
ARTICLE IN PRESS 230 14 centres but cancer patients receive their HPN via their cancer physicians and up to 50% of patients are trained out of hospital. In Scotland, a Managed Clinical Network supported centrally provides for all HPN patients. In other countries including England, there has been no centrally directed development of HPN. In the USA, which has an excessively high usage of HPN, some patients attend major specialist centres but more do not. In England, there is no nationally coordinated HPN service but 2 major centres (Hope Hospital, Salford and St. Mark’s Hospital, London) are designated as Intestinal Failure Units by the Department of Health, UK. By default, these centres provide for approximately 220 HPN patients but no special funding is attached to this service and these 2 centres are now saturated to the detriment of patients with intestinal failure awaiting admission.1 Although the actual costs of HPN fluids and supporting goods such as pumps are paid for by the individual patient’s Primary Care Trust, the infrastructure required to provide hospital based clinical support, HPN training, and follow-up is not recognised or funded in England. Instead, the cost of providing HPN is absorbed into the overall budget of those hospitals providing care for HPN patients. Lack of dedicated central funding results in providers of HPN having to fight for local funds to provide resources such as nutrition nurses, and often no money is available. Provision of HPN in the UK has risen from 25 patients in 19802 to over 500 patients in 2002,1,3 of which 89% receive supplies from a commercial homecare company There are at least 300 patients receiving HPN in the UK outside the 2 major centres. In 2002, data from the British Artificial Nutrition Survey (BANS) showed that there were 62 units in the UK caring for HPN but 34 of these had only one patient. Excluding the 2 national Intestinal Failure Units, only 15 centres had more than 5 HPN patients with none caring for more than 29. Some areas of the UK have no patients recorded as receiving HPN.4 Using data from BANS5 the British Association for Parenteral and Enteral Nutrition (BAPEN) recognised in 1999 that the delivery of HPN in the United Kingdom is associated with inequity of access and highly variable quality of care. There was wide variation in point prevalence of HPN by region and by Health Authority. It is unlikely that the variation in incidence of conditions leading to HPN could explain these findings. A major difference between UK and the rest of Europe is the incidence of cancer as an indication for HPN. In Italy and the Netherlands, up to 70% of HPN is for cancer compared to 14% of new HPN patients in the UK in 2001(BANS). We believe these
D.A. Freshwater et al. differences reflect the difficulties in accessing HPN in many parts of the UK remote from major HPN centres. There is clearly a need for increased capacity and better distribution of centres in England. It would, however, be important for existing medium sized units such as ours to be able to demonstrate quality of care equivalent to that in larger centres. To this end, we have completed a study to evaluate an established HPN program at our hospital which is a medium sized District General Hospital secondary referral centre (DGH) serving a local population of 330,000 but offering an HPN service to the whole of the West Midlands region (5.5 million). It is the first to report from outside the major UK centres. Our aims were to assess indications for HPN, patient demographics, and to compare outcome by complication rates and quality of life compared to larger referral centres nationally and internationally. This study is a continuation of the previously reported data from our unit.6 We anticipate that other developing European centres will find our experience useful when debating the type of HPN delivery model appropriate for their country.
Materals and methods A retrospective analysis of data was performed on all adult patients commenced on HPN from 1989 to August 2002 at Russells Hall Hospital, Dudley, an NHS Trust in the West Midlands region of England. For some years we have worked closely with Hope Hospital Intestinal Failure Unit in Salford, situated 145 km to the north. The following categories of data were recorded: demographic details, length of small and large bowel remaining, duration receiving HPN, final nutritional status (i.e. whether patient still requiring parenteral nutrition or not), underlying disease, indication for HPN, type of feeding line, training time, line complications of infection (suspected and proven), fracture and occlusion, deep vein thrombosis, metabolic complications, liver complications, World Health Organisation (WHO) solution usage, octreotide or lanreotide usage, time in hospital necessitated by HPN-related complications and quality of life markers. Patient care was provided by a multidisciplinary team including Consultant Gastroenterologist, Consultant Anaesthetist for central line insertion, Nutrition nurse, Dietitian, and Pharmacist.
ARTICLE IN PRESS 2300 weeks of HPN in a district general hospital
231 patients were managed in conjunction with Hope Hospital IF service.
Results Patient demographics
Logistics During the audit period HPN was provided to 23 patients with an age range of 18–80 years of age (median 50 years). 13 (56.5%) were female, 10 (43.5%) were male. All patients were of Caucasian origin. The HPN was provided for a total of 16,173 patient days (2310 weeks or 44 patient years) (Table 1). 15 patients (65.2%) had colon in continuity with residual small bowel, and 5 of these patients returned to independent oral nutrition, making up 71.4% of those who returned to oral nutrition. Length of residual small bowel was only specifically recorded in 8 patients’ notes, with a mean length of 99.3 cm (range 30–285 cm). The indication for HPN was short bowel in 17 patients, bowel obstruction in 4 patients, and malabsorption in 2 patients.
Origin of patients During the period of the study 33.3% of patients originated from acute hospitals throughout the West Midlands Region other than Dudley. 17.4%
Table 1
We used tailor made 3–4 l bags of parenteral nutrition prepared by homecare companies from 3 to 7 days per week and containing o1 g/kg/day over 1 week of lipid with minimal additions required by patient (e.g. of trace elements or vitamins). Feeds are stored in a fridge provided and supplied every 1–2 weeks by a homecare company which also provides all other equipment for homecare e.g. pumps, dressings, and heparin.
Line care and complications All HPN feeding lines were inserted by a dedicated consultant anaesthetist with full aseptic technique in an operating theatre. All lines were single lumen tunnelled catheters, inserted into either internal jugular or subclavian veins except for 2 temporary femoral lines. The only line insertion complication was one pneumothorax. A total of 51 lines were inserted, with line survival having a range of 4–2784 days. Training of HPN patients was carried out according to National Nutrition Nurse Group
Patient demographics.
Patient number
Sex
Age
Diagnosis
Duration of HPN (days)
Colon in line?
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23
F F F M M F F M M F M F F M F M F M M F M F F
48 65 62 52 40 47 60 62 48 37 43 30 37 70 52 27 60 22 74 80 54 62 26
Ischaemic vascular disease Crohn’s Gastric cancer Crohn’s Crohn’s Colonic cancer & radiation enteritis Small bowel cancer & radiation enteritis Other GI disease Crohn’s Ulcerative Colitis Crohn’s Cancer: elsewhere Crohn’s Ischaemic vascular disease Ischaemic vascular disease Ischaemic vascular disease Colonic cancer Volvulus Crohn’s Ischaemic vascular disease Other GI disease Crohn’s Other GI disease & motility disorder
1236 1517 17 1164 119 50 3332 108 373 315 244 52 634 267 206 120 22 510 2415 229 168 1844 784
Y N Y N Y Y Y Y Y N N Y N Y Y Y Y N N Y Y Y N
ARTICLE IN PRESS 232
D.A. Freshwater et al.
(NNNG) protocols on our gastroenterology ward by our nurse specialist as an in-patient. 19 patients (82.6%) became fully independent with family support, but 3 patients (13%) needed community nurse back up and one continued to be cared for by the Homecare company in a nursing home before reconstitution of gut continuity. All patients were allowed home for weekends and during the day during their training period. Duration of training required was specifically recorded in the notes of 15 patients (65.2%). Median training required was 32 days (range 9–67 days). Training times were adversely affected by intercurrent problems related to the underlying diagnoses or co-morbidity. The results for line complications were very widely skewed by our oldest patient who received 345 weeks of HPN between 69 and 75 years of age and suffered 16 line infections as well as a subclavian vein thrombosis and pulmonary infarcts. This was due to poor nasal hygiene (habitual nasal digitation) despite prolonged training. He was shown to have chronic Staphylococcus aureus carriage in his nose, and line infections were also due to S. aureus. Following the onset of senile macular degeneration, district nurses trained by our unit took over his line management and this resulted in a drastic reduction in line sepsis rate. This patient has been omitted from the following analysis to allow genuine representation of the overall line complication rate and to avoid skewing of data in this small study. Line complication rates are summarised in Fig. 1. The ‘suspected’ line infection rate was 0.74 per patient year (i.e. 1 suspected infection in 16.2 months) but as can be seen in Fig. 1 the proven line infection rate was only 0.315 per patient year (i.e. 1 infection in 38 months). Line infections were considered proven if an organism was grown from either blood cultures, line brushing or a line tip. The suspected line infections that in actuality were not line infection nevertheless required atten0.8
dances for line and blood cultures and observation and more closely reflects the overall workload of the unit. All our lines are now inserted by a Consultant Anaesthetist with a special interest in venous access and using a standard direct puncture technique.
Metabolic complications Metabolic complications were noted in 9 patients (39.1%), with osteoporosis in 3 patients (as defined by bone Dual Energy X-ray Absorptiometry (DEXA) scans 42 SD below population mean), which was treated by nasal calcitonin or iv pamidronate, hypophosphataemia in 2 patients, hypokalaemia in 1 patient, fat soluble vitamin deficiency in 2 patients (leading to osteomalacia and night blindness), hypomagnesaemia in 1 patient and renal impairment in 1 patient. Secondary Hyperparathyroidism was present in one patient and another had vitamin D related osteomalacia.7,8 Twelve patients (52.2%) required WHO electrolyte solution, with a mean daily intake of 1333 ml per day (range 500–3000 ml). Octreotide was used in only 4 patients (17.4%). Dose range was 50–100 mcg/day. Hepatobiliary problems were only noted in 6 patients (26%) with 4 patients developing cholecystitis, 1 patient developing ascending cholangitis. One patient also developed primary sclerosing cholangitis, but this was related to his IBD not HPN. Our rate of hepatobiliary complications is low in comparison with published series.9–15
Outcomes At the end of our audit period, 7 patients (30.4%) had returned to independent oral nutrition, 9 patients (39.13%) had died and 7 patients (30.4%) remained on HPN. Of the patients who died, only one death was related to HPN with septic central vein thrombosis leading to infected pulmonary emboli. This patient neglected to follow protocols regarding tunnel sepsis resulting in a delayed presentation.
Number Per Patient Year
0.7
Quality of life
0.6 0.5 0.4 0.3 0.2 0.1 0
Suspected Infection Proven Infection
Occlusion
Fracture
Figure 1 Line complication rates per patient year.
Patients received a total of 16,173 days of HPN, and required total hospital admissions of 1624 days for HPN related issues. Thus they spent 90% of their time at home, and spent 10% of time in hospital. At the time of audit (or last recorded measurement in cases of patients who had died), the average Karnowsky Index score of the whole group was 70 (self-caring but unable to work) and 19 patients
ARTICLE IN PRESS 2300 weeks of HPN in a district general hospital (82.6%) achieved a Karnowsky Index of 60 (generally self-caring) or greater. Karnowsky Indexes were recorded in the patients’ notes and for this audit we chose their last recorded Karnowsky Index on HPN to reflect their quality of life on HPN.
Discussion The aim of HPN is to allow total intravenous feeding for patients with chronic intestinal failure to be undertaken in their own home instead of being dependent on total parenteral nutrition (TPN) in hospital.16 HPN is 65% more cost effective than inhospital TPN17,18 but has potentially life-threatening complications and requires close co-operation and the effective organisation provided by a multidisciplinary team of health care professionals. The patients or carers must also be fully trained and competent to undertake full responsibility for the feeding regime.16 This point is well demonstrated in our own series, where our most elderly patient was unable to grasp the importance of strict asepsis despite prolonged training and support. Many of our candidate patients were not initially suitable for HPN training due to ongoing problems related to their underlying diseases and comorbidity. HPN programmes in the UK were initially established in a limited number of specialist tertiary referral centres. This has led to geographic inequality of access5 and is no longer sustainable for the following reasons: 1. The saturation of the specialist units1 and rising point prevalence and period prevalence of patients requiring HPN.19,20 2. Restriction of HPN to specialist referral centres results in long distances being travelled by patients. Data from Hope Hospital show that patients are travelling considerable distances for both routine attendances and emergencies, and 45% of their patients travel 480 km.1 In a national survey performed by Patients on Intravenous and Nasogastric Nutrition Therapy (PINNT) the mean distance travelled for a routine appointment was 135 km, and for an emergency it was 114 km.21 3. BANS data shows that the age at inception of HPN is rising. 4. Dependency levels of HPN patients are rising, making care from remote centres difficult. 5. An increasing demand for HPN treatment of cancer patients as in Europe and the USA will be impossible to achieve within current resources
233 6. The long life expectancy of HPN patients as recently published from St Mark’s.22 For all of these reasons the current service is inadequate. The Department of Health has shown some interest in expansion of national capacity through a sub-national service for HPN using existing centres such as ours working in networks with major centres. The challenge for developing centres including District General Hospitals such as ours is to prove that HPN can be provided with comparable complication rates to larger specialist centres here and abroad. Our study results are not as good as the published results from the Intestinal Failure Unit at Salford, Manchester which reported a catheter-related sepsis rate of 1 episode per 113 months,23 and also published another study with a catheter morbidity rate of 1 episode per 46 patient months of HPN.24 However, the rate at Ninewells Hospital Dundee of 1 complication per 40.8 treatment months25 is comparable, and at ESPEN the other Intestinal Failure Unit at St Marks Hospital recently presented a catheter sepsis rate of 1.46 episodes per year (personal communication from Dr. S. Gabe, St. Mark’s Hospital). Furthermore, our data also compares well to units outside the UK. At the University of California the overall catheter infection rate in their published series was 0.37 per patient year (1 per 32.4 months).26 Other units in America and Europe have also published similar complication rates to ours27–32 (Table 2). Our complication rates have not altered significantly since our last published report.6 This study demonstrates that HPN can be provided at non-specialist secondary care level with complication rates comparable to larger tertiary referral centres in the UK and abroad, and with good quality of life. This finding supports the hypothesis that increasing national HPN capacity through use of medium sized centres more geographically convenient for patients will improve access to HPN without detriment to quality of care. Centres with only sporadic experience and uncertain quality would find it easier to utilise closer medium sized centres. The major tertiary referral centres including the National Intestinal Failure centres would be able to share their HPN burden with centres closer to the patients’ homes, management of difficult cases and specialist surgical procedures such as fistula surgery and small bowel transplantation could proceed more efficiently without saturation of capacity by stable HPN patients. Regional centres would therefore provide a network of units for the local provision of HPN. The population served by each unit would be
ARTICLE IN PRESS 234
D.A. Freshwater et al.
Table 2 Catheter infection rates reported in various HPN centres. Centre
Catheter sepsis rate per patient year
Hope Hospital, Salford, UK23 Ninewells Hospital, Dundee, UK25 University of Bologna, Italy29 Russells Hall Hospital, Dudley, UK Federico II University, Naples, Italy31 University Hospital Strasbourg, France30 University of California, USA26 Mayo Clinic, Rochester, USA28 Policlinico S Orsola, Bologna, Italy32 Mean Sepsis Rate
0.11 0.29 0.3 0.315 0.36 0.36 0.37 0.375 0.411 0.321
a balance between sufficient volume to develop skills and knowledge of the nutrition team33 and providing a local accessible service for patients. Funding has always been a difficulty for those wishing to offer HPN in the UK. In Scotland, a managed clinical network sponsored by the Scottish Clinical Standards Board has provided improved equity of access and quality of care. A similar model is being developed in Wales. In England, restructuring of health care has led to lack of direction and responsibility for specialised services such as HPN. We hope that this paper provides evidence that regional centres such as ours can provide an HPN service, but without official support HPN provision will remain haphazard in England. What lessons can be learned which might prove useful in other countries with developing HPN services? As numbers of HPN patients rise throughout Europe, there will need to be increased capacity. This can either be achieved by increased capacity within current centres or a wider distribution of centres. Given the distances travelled to major centres in some European countries, centres will need to be sensitive to the needs of patients for more local services. The lesson from the UK is that lack of central direction leads to inadequate services and inequity of access. The shortfall in HPN services can only be identified if there is a robust national audit of HPN as provided by the British Artificial Nutrition Survey (BANS) on behalf of BAPEN.
Acknowledgements The authors wish to thank the gastroenterology nursing staff, dieticians and pharmacists at Dudley Group of Hospitals NHS Trust for their expertise and unstinting enthusiasm in establishing this HPN programme in the face of limited resources.
References 1. Jones BJ. Recent developments in the delivery of home parenteral nutrition in the UK. Proc Nutr Soc 2003;62:719–25. 2. Bambach C, Lennard-Jones J, Powell-Tuck J, et al. Home parenteral nutrition in England and Wales. Br J Med 1980;281:1407–9. 3. Glencourse C, Meadows N, Holden CE. Trends in Artificial Nutrition Support in the UK. Sovereign: BAPEN; 2004. 4. Bakker H, Bozzetti F, Staun M, et al. Home parenteral nutrition in adults: a European multicentre survey in 1997. ESPEN-Home Artificial Nutrition Working Group. Clin Nut 1999;18:135–40. 5. Elia M, Russell C, Shaffer J, et al. Report of the British Artificial Nutrition Survey August. Sovereign: BAPEN; 1999. 6. Ransford R, Jones BJ. A thousand weeks of home parenteral nutrition at a district general hospital in the UK. Br J Intens Care 2000;10:150–4. 7. Shike M, Harrison JE, Sturtridge WC, et al. Metabolic bone disease in patients receiving long-term total parenteral nutrition. Ann Intern Med 1980;92:343–50. 8. Shike M, Sturtridge WC, Tam CS, et al. A possible role of vitamin D in the genesis of parenteral-nutrition-induced metabolic bone disease. Ann Intern Med 1981;95:560–8. 9. Gaddipati K, Yang P. Hepatobiliary complications of parenteral nutrition. Gastroenterologist 1996;4:98–106. 10. Fleming CR. Hepatobiliary complications in adults receiving nutrition support. Dig Dis 1994;12:191–8. 11. Fein BI, Holt PR. Hepatobiliary complications of total parenteral nutrition. J Clin Gastroenterol 1994;18:62–6. 12. Quigley EM, Marsh MN, Shaffer JL, Markin RS. Hepatobiliary complications of total parenteral nutrition. Gastroenterology 1993;104:286–301. 13. Payne-James JJ, Silk DB. Hepatobiliary dysfunction associated with total parenteral nutrition. Dig Dis 1991;9:106–24. 14. Farrell MK, Balistreri WF. Parenteral nutrition and hepatobiliary dysfunction. Clin Perinatol 1986;13:197–212. 15. Cavicchi M, Beau P, Crenn P, Degott C, Messing B. Prevalence of liver disease and contributing factors in patients receiving home parenteral nutrition for permanent intestinal failure. Ann Intern Med 2000;132:525–32. 16. Milewski PJ, Gross E, Holbrook I, Clarke C, Turnberg LA, Irving MH. Parenteral nutrition at home in management of intestinal failure. Br Med J 1980;280:1356–7. 17. Pironi L. Cost-benefit of home artificial nutrition regulation [comment]. Clin Nutr 2001;20:101–2. 18. Richards DM, Irving MH. Cost-utility analysis of home parenteral nutrition. Br J Surg 1996;83:1226–9. 19. Elia M, Russell C, Stratton R, et al. Trends in Artificial Nutrition Support in the UK during 1996–2000. Sovereign: BAPEN; 2001. 20. Elia M, Stratton R, Russell C. Report of British Artificial Nutrition Survey 2001. Sovereign: BAPEN; 2002.
ARTICLE IN PRESS 2300 weeks of HPN in a district general hospital 21. Wheatley C. Ensuring equity of access and quality of care: patients’ perspectives and results of national survey. Christchurch, Dorset: PINNT; 2002. 22. Vega R, Polymeros D, Papadia C, Hodgson R, Forbes A, Gabe S. Prognostic factors affecting early and late survival in adult patients on home parenteral nutrition. Gastroenterology 2003;124:A-431. 23. Williams N, Carlson GL, Scott NA, Irving MH. Incidence and management of catheter-related sepsis in patients receiving home parenteral nutrition. Br J Surg 1994;81:392–4. 24. Williams N, Scott NA, Irving MH. Catheter-related morbidity in patients on home parenteral nutrition: implications for small bowel transplantation. Ann R Coll Surg Engl 1994;76:384–6. 25. Johnston DA, Pennington CR. Home parenteral nutrition in Tayside 1980–1992. Scott Med J 1993;38:110–1. 26. Buchman AL, Moukarzel A, Goodson B, et al. Catheterrelated infections associated with home parenteral nutrition and predictive factors for the need for catheter removal in their treatment. J Parenter Enteral Nutr 1994;18:297–302. 27. Herfindal ET, Bernstein LR, Wong AF, Hogue VW, Darbinian JA. Complications of home parenteral nutrition. Clin Pharm 1992;11:543–8.
235 28. O’Keefe SJ, Burnes JU, Thompson RL. Recurrent sepsis in home parenteral nutrition patients: an analysis of risk factors. J Parenter Enteral Nutr 1994;18:256–63. 29. Pironi L, Paganelli F, Labate AM, et al. Safety and efficacy of home parenteral nutrition for chronic intestinal failure: a 16-year experience at a single centre. Dig Liver Dis 2003;35:314–24. 30. Reimund JM, Arondel Y, Finck G, Zimmermann F, Duclos B, Baumann R. Catheter-related infection in patients on home parenteral nutrition: results of a prospective survey. Clin Nutr 2002;21:33–8. 31. Santarpia L, Pasanisi F, Alfonsi L, et al. Prevention and treatment of implanted central venous catheter (CVC)related sepsis: a report after six years of home parenteral nutrition (HPN) [comment]. Clin Nutr 2002;21:207–11. 32. Pironi L, Miglioli M, Ruggeri E, et al. Home parenteral nutrition for the management of chronic intestinal failure: a 34 patient-year experience. Ital J Gastroenterol 1993;25:411–8. 33. Detsky AS. Evaluating a mature technology: long-term home parenteral nutrition. Gastroenterology 1995;108:1302–4.
http://intl.elsevierhealth.com/journals/clnu
ORIGINAL ARTICLE
Can home parenteral nutrition be provided by non-specialised centres? 2300 weeks of experience at a district general hospital in the United Kingdom Dennis A. Freshwater, Abdulrahman Saadeddin, Penny Deel-Smith, Tim Digger, Barry J.M. Jones Department of Gastroenterology and Nutrition, Russells Hall Hospital, Dudley DY1 2HQ, West Midlands, UK Received 2 March 2004; accepted 20 September 2004
Summary Background & aims: Home Parenteral Nutrition (HPN) is an accepted treatment of intestinal failure but is mostly restricted to a few large specialist centres in the UK. The provision of high-quality HPN is of paramount importance to patients with intestinal failure, but its restriction to large specialist centres limits the number of patients who can receive it. The study aim was to determine if HPN can be effectively administered in a non-specialist centre. Methods: Adult HPN patients at a single District General Hospital in the United Kingdom were analysed by indications, complications and outcome. Results: 2310 patient weeks of HPN were provided to 23 patients, aged 18–80 years with intestinal failure. Catheter infection rate was 0.315 per patient year, with one patient excluded due to persistent nasal digitation. Patients spent 89.96% of their time at home and 82.6% achieved a Karnowsky Index of 70 (generally selfcaring or greater). Conclusions: HPN can be practised at non-specialist District General Hospital level achieving complication rates comparable to large specialist centres, and this lends weight to the argument for a network model to widen provision beyond large tertiary referral specialist centres in the United Kingdom. & 2004 Elsevier Ltd. All rights reserved.
KEYWORDS Home parenteral nutrition; Intestinal failure; Catheter sepsis
Introduction Corresponding
author.
Tel.:
+441384 456074;
+441384 244262. E-mail addresses: [email protected] (D.A. Freshwater), [email protected] (A. Saadeddin), [email protected] (B.J.M. Jones).
fax:
Home parenteral nutrition (HPN) has become established as the main treatment for chronic intestinal failure. Throughout Europe, there are numerous models of HPN provision. In Denmark, there are two national centres. In France there are
0261-5614/$ - see front matter & 2004 Elsevier Ltd. All rights reserved. doi:10.1016/j.clnu.2004.09.015
ARTICLE IN PRESS 230 14 centres but cancer patients receive their HPN via their cancer physicians and up to 50% of patients are trained out of hospital. In Scotland, a Managed Clinical Network supported centrally provides for all HPN patients. In other countries including England, there has been no centrally directed development of HPN. In the USA, which has an excessively high usage of HPN, some patients attend major specialist centres but more do not. In England, there is no nationally coordinated HPN service but 2 major centres (Hope Hospital, Salford and St. Mark’s Hospital, London) are designated as Intestinal Failure Units by the Department of Health, UK. By default, these centres provide for approximately 220 HPN patients but no special funding is attached to this service and these 2 centres are now saturated to the detriment of patients with intestinal failure awaiting admission.1 Although the actual costs of HPN fluids and supporting goods such as pumps are paid for by the individual patient’s Primary Care Trust, the infrastructure required to provide hospital based clinical support, HPN training, and follow-up is not recognised or funded in England. Instead, the cost of providing HPN is absorbed into the overall budget of those hospitals providing care for HPN patients. Lack of dedicated central funding results in providers of HPN having to fight for local funds to provide resources such as nutrition nurses, and often no money is available. Provision of HPN in the UK has risen from 25 patients in 19802 to over 500 patients in 2002,1,3 of which 89% receive supplies from a commercial homecare company There are at least 300 patients receiving HPN in the UK outside the 2 major centres. In 2002, data from the British Artificial Nutrition Survey (BANS) showed that there were 62 units in the UK caring for HPN but 34 of these had only one patient. Excluding the 2 national Intestinal Failure Units, only 15 centres had more than 5 HPN patients with none caring for more than 29. Some areas of the UK have no patients recorded as receiving HPN.4 Using data from BANS5 the British Association for Parenteral and Enteral Nutrition (BAPEN) recognised in 1999 that the delivery of HPN in the United Kingdom is associated with inequity of access and highly variable quality of care. There was wide variation in point prevalence of HPN by region and by Health Authority. It is unlikely that the variation in incidence of conditions leading to HPN could explain these findings. A major difference between UK and the rest of Europe is the incidence of cancer as an indication for HPN. In Italy and the Netherlands, up to 70% of HPN is for cancer compared to 14% of new HPN patients in the UK in 2001(BANS). We believe these
D.A. Freshwater et al. differences reflect the difficulties in accessing HPN in many parts of the UK remote from major HPN centres. There is clearly a need for increased capacity and better distribution of centres in England. It would, however, be important for existing medium sized units such as ours to be able to demonstrate quality of care equivalent to that in larger centres. To this end, we have completed a study to evaluate an established HPN program at our hospital which is a medium sized District General Hospital secondary referral centre (DGH) serving a local population of 330,000 but offering an HPN service to the whole of the West Midlands region (5.5 million). It is the first to report from outside the major UK centres. Our aims were to assess indications for HPN, patient demographics, and to compare outcome by complication rates and quality of life compared to larger referral centres nationally and internationally. This study is a continuation of the previously reported data from our unit.6 We anticipate that other developing European centres will find our experience useful when debating the type of HPN delivery model appropriate for their country.
Materals and methods A retrospective analysis of data was performed on all adult patients commenced on HPN from 1989 to August 2002 at Russells Hall Hospital, Dudley, an NHS Trust in the West Midlands region of England. For some years we have worked closely with Hope Hospital Intestinal Failure Unit in Salford, situated 145 km to the north. The following categories of data were recorded: demographic details, length of small and large bowel remaining, duration receiving HPN, final nutritional status (i.e. whether patient still requiring parenteral nutrition or not), underlying disease, indication for HPN, type of feeding line, training time, line complications of infection (suspected and proven), fracture and occlusion, deep vein thrombosis, metabolic complications, liver complications, World Health Organisation (WHO) solution usage, octreotide or lanreotide usage, time in hospital necessitated by HPN-related complications and quality of life markers. Patient care was provided by a multidisciplinary team including Consultant Gastroenterologist, Consultant Anaesthetist for central line insertion, Nutrition nurse, Dietitian, and Pharmacist.
ARTICLE IN PRESS 2300 weeks of HPN in a district general hospital
231 patients were managed in conjunction with Hope Hospital IF service.
Results Patient demographics
Logistics During the audit period HPN was provided to 23 patients with an age range of 18–80 years of age (median 50 years). 13 (56.5%) were female, 10 (43.5%) were male. All patients were of Caucasian origin. The HPN was provided for a total of 16,173 patient days (2310 weeks or 44 patient years) (Table 1). 15 patients (65.2%) had colon in continuity with residual small bowel, and 5 of these patients returned to independent oral nutrition, making up 71.4% of those who returned to oral nutrition. Length of residual small bowel was only specifically recorded in 8 patients’ notes, with a mean length of 99.3 cm (range 30–285 cm). The indication for HPN was short bowel in 17 patients, bowel obstruction in 4 patients, and malabsorption in 2 patients.
Origin of patients During the period of the study 33.3% of patients originated from acute hospitals throughout the West Midlands Region other than Dudley. 17.4%
Table 1
We used tailor made 3–4 l bags of parenteral nutrition prepared by homecare companies from 3 to 7 days per week and containing o1 g/kg/day over 1 week of lipid with minimal additions required by patient (e.g. of trace elements or vitamins). Feeds are stored in a fridge provided and supplied every 1–2 weeks by a homecare company which also provides all other equipment for homecare e.g. pumps, dressings, and heparin.
Line care and complications All HPN feeding lines were inserted by a dedicated consultant anaesthetist with full aseptic technique in an operating theatre. All lines were single lumen tunnelled catheters, inserted into either internal jugular or subclavian veins except for 2 temporary femoral lines. The only line insertion complication was one pneumothorax. A total of 51 lines were inserted, with line survival having a range of 4–2784 days. Training of HPN patients was carried out according to National Nutrition Nurse Group
Patient demographics.
Patient number
Sex
Age
Diagnosis
Duration of HPN (days)
Colon in line?
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23
F F F M M F F M M F M F F M F M F M M F M F F
48 65 62 52 40 47 60 62 48 37 43 30 37 70 52 27 60 22 74 80 54 62 26
Ischaemic vascular disease Crohn’s Gastric cancer Crohn’s Crohn’s Colonic cancer & radiation enteritis Small bowel cancer & radiation enteritis Other GI disease Crohn’s Ulcerative Colitis Crohn’s Cancer: elsewhere Crohn’s Ischaemic vascular disease Ischaemic vascular disease Ischaemic vascular disease Colonic cancer Volvulus Crohn’s Ischaemic vascular disease Other GI disease Crohn’s Other GI disease & motility disorder
1236 1517 17 1164 119 50 3332 108 373 315 244 52 634 267 206 120 22 510 2415 229 168 1844 784
Y N Y N Y Y Y Y Y N N Y N Y Y Y Y N N Y Y Y N
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(NNNG) protocols on our gastroenterology ward by our nurse specialist as an in-patient. 19 patients (82.6%) became fully independent with family support, but 3 patients (13%) needed community nurse back up and one continued to be cared for by the Homecare company in a nursing home before reconstitution of gut continuity. All patients were allowed home for weekends and during the day during their training period. Duration of training required was specifically recorded in the notes of 15 patients (65.2%). Median training required was 32 days (range 9–67 days). Training times were adversely affected by intercurrent problems related to the underlying diagnoses or co-morbidity. The results for line complications were very widely skewed by our oldest patient who received 345 weeks of HPN between 69 and 75 years of age and suffered 16 line infections as well as a subclavian vein thrombosis and pulmonary infarcts. This was due to poor nasal hygiene (habitual nasal digitation) despite prolonged training. He was shown to have chronic Staphylococcus aureus carriage in his nose, and line infections were also due to S. aureus. Following the onset of senile macular degeneration, district nurses trained by our unit took over his line management and this resulted in a drastic reduction in line sepsis rate. This patient has been omitted from the following analysis to allow genuine representation of the overall line complication rate and to avoid skewing of data in this small study. Line complication rates are summarised in Fig. 1. The ‘suspected’ line infection rate was 0.74 per patient year (i.e. 1 suspected infection in 16.2 months) but as can be seen in Fig. 1 the proven line infection rate was only 0.315 per patient year (i.e. 1 infection in 38 months). Line infections were considered proven if an organism was grown from either blood cultures, line brushing or a line tip. The suspected line infections that in actuality were not line infection nevertheless required atten0.8
dances for line and blood cultures and observation and more closely reflects the overall workload of the unit. All our lines are now inserted by a Consultant Anaesthetist with a special interest in venous access and using a standard direct puncture technique.
Metabolic complications Metabolic complications were noted in 9 patients (39.1%), with osteoporosis in 3 patients (as defined by bone Dual Energy X-ray Absorptiometry (DEXA) scans 42 SD below population mean), which was treated by nasal calcitonin or iv pamidronate, hypophosphataemia in 2 patients, hypokalaemia in 1 patient, fat soluble vitamin deficiency in 2 patients (leading to osteomalacia and night blindness), hypomagnesaemia in 1 patient and renal impairment in 1 patient. Secondary Hyperparathyroidism was present in one patient and another had vitamin D related osteomalacia.7,8 Twelve patients (52.2%) required WHO electrolyte solution, with a mean daily intake of 1333 ml per day (range 500–3000 ml). Octreotide was used in only 4 patients (17.4%). Dose range was 50–100 mcg/day. Hepatobiliary problems were only noted in 6 patients (26%) with 4 patients developing cholecystitis, 1 patient developing ascending cholangitis. One patient also developed primary sclerosing cholangitis, but this was related to his IBD not HPN. Our rate of hepatobiliary complications is low in comparison with published series.9–15
Outcomes At the end of our audit period, 7 patients (30.4%) had returned to independent oral nutrition, 9 patients (39.13%) had died and 7 patients (30.4%) remained on HPN. Of the patients who died, only one death was related to HPN with septic central vein thrombosis leading to infected pulmonary emboli. This patient neglected to follow protocols regarding tunnel sepsis resulting in a delayed presentation.
Number Per Patient Year
0.7
Quality of life
0.6 0.5 0.4 0.3 0.2 0.1 0
Suspected Infection Proven Infection
Occlusion
Fracture
Figure 1 Line complication rates per patient year.
Patients received a total of 16,173 days of HPN, and required total hospital admissions of 1624 days for HPN related issues. Thus they spent 90% of their time at home, and spent 10% of time in hospital. At the time of audit (or last recorded measurement in cases of patients who had died), the average Karnowsky Index score of the whole group was 70 (self-caring but unable to work) and 19 patients
ARTICLE IN PRESS 2300 weeks of HPN in a district general hospital (82.6%) achieved a Karnowsky Index of 60 (generally self-caring) or greater. Karnowsky Indexes were recorded in the patients’ notes and for this audit we chose their last recorded Karnowsky Index on HPN to reflect their quality of life on HPN.
Discussion The aim of HPN is to allow total intravenous feeding for patients with chronic intestinal failure to be undertaken in their own home instead of being dependent on total parenteral nutrition (TPN) in hospital.16 HPN is 65% more cost effective than inhospital TPN17,18 but has potentially life-threatening complications and requires close co-operation and the effective organisation provided by a multidisciplinary team of health care professionals. The patients or carers must also be fully trained and competent to undertake full responsibility for the feeding regime.16 This point is well demonstrated in our own series, where our most elderly patient was unable to grasp the importance of strict asepsis despite prolonged training and support. Many of our candidate patients were not initially suitable for HPN training due to ongoing problems related to their underlying diseases and comorbidity. HPN programmes in the UK were initially established in a limited number of specialist tertiary referral centres. This has led to geographic inequality of access5 and is no longer sustainable for the following reasons: 1. The saturation of the specialist units1 and rising point prevalence and period prevalence of patients requiring HPN.19,20 2. Restriction of HPN to specialist referral centres results in long distances being travelled by patients. Data from Hope Hospital show that patients are travelling considerable distances for both routine attendances and emergencies, and 45% of their patients travel 480 km.1 In a national survey performed by Patients on Intravenous and Nasogastric Nutrition Therapy (PINNT) the mean distance travelled for a routine appointment was 135 km, and for an emergency it was 114 km.21 3. BANS data shows that the age at inception of HPN is rising. 4. Dependency levels of HPN patients are rising, making care from remote centres difficult. 5. An increasing demand for HPN treatment of cancer patients as in Europe and the USA will be impossible to achieve within current resources
233 6. The long life expectancy of HPN patients as recently published from St Mark’s.22 For all of these reasons the current service is inadequate. The Department of Health has shown some interest in expansion of national capacity through a sub-national service for HPN using existing centres such as ours working in networks with major centres. The challenge for developing centres including District General Hospitals such as ours is to prove that HPN can be provided with comparable complication rates to larger specialist centres here and abroad. Our study results are not as good as the published results from the Intestinal Failure Unit at Salford, Manchester which reported a catheter-related sepsis rate of 1 episode per 113 months,23 and also published another study with a catheter morbidity rate of 1 episode per 46 patient months of HPN.24 However, the rate at Ninewells Hospital Dundee of 1 complication per 40.8 treatment months25 is comparable, and at ESPEN the other Intestinal Failure Unit at St Marks Hospital recently presented a catheter sepsis rate of 1.46 episodes per year (personal communication from Dr. S. Gabe, St. Mark’s Hospital). Furthermore, our data also compares well to units outside the UK. At the University of California the overall catheter infection rate in their published series was 0.37 per patient year (1 per 32.4 months).26 Other units in America and Europe have also published similar complication rates to ours27–32 (Table 2). Our complication rates have not altered significantly since our last published report.6 This study demonstrates that HPN can be provided at non-specialist secondary care level with complication rates comparable to larger tertiary referral centres in the UK and abroad, and with good quality of life. This finding supports the hypothesis that increasing national HPN capacity through use of medium sized centres more geographically convenient for patients will improve access to HPN without detriment to quality of care. Centres with only sporadic experience and uncertain quality would find it easier to utilise closer medium sized centres. The major tertiary referral centres including the National Intestinal Failure centres would be able to share their HPN burden with centres closer to the patients’ homes, management of difficult cases and specialist surgical procedures such as fistula surgery and small bowel transplantation could proceed more efficiently without saturation of capacity by stable HPN patients. Regional centres would therefore provide a network of units for the local provision of HPN. The population served by each unit would be
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Table 2 Catheter infection rates reported in various HPN centres. Centre
Catheter sepsis rate per patient year
Hope Hospital, Salford, UK23 Ninewells Hospital, Dundee, UK25 University of Bologna, Italy29 Russells Hall Hospital, Dudley, UK Federico II University, Naples, Italy31 University Hospital Strasbourg, France30 University of California, USA26 Mayo Clinic, Rochester, USA28 Policlinico S Orsola, Bologna, Italy32 Mean Sepsis Rate
0.11 0.29 0.3 0.315 0.36 0.36 0.37 0.375 0.411 0.321
a balance between sufficient volume to develop skills and knowledge of the nutrition team33 and providing a local accessible service for patients. Funding has always been a difficulty for those wishing to offer HPN in the UK. In Scotland, a managed clinical network sponsored by the Scottish Clinical Standards Board has provided improved equity of access and quality of care. A similar model is being developed in Wales. In England, restructuring of health care has led to lack of direction and responsibility for specialised services such as HPN. We hope that this paper provides evidence that regional centres such as ours can provide an HPN service, but without official support HPN provision will remain haphazard in England. What lessons can be learned which might prove useful in other countries with developing HPN services? As numbers of HPN patients rise throughout Europe, there will need to be increased capacity. This can either be achieved by increased capacity within current centres or a wider distribution of centres. Given the distances travelled to major centres in some European countries, centres will need to be sensitive to the needs of patients for more local services. The lesson from the UK is that lack of central direction leads to inadequate services and inequity of access. The shortfall in HPN services can only be identified if there is a robust national audit of HPN as provided by the British Artificial Nutrition Survey (BANS) on behalf of BAPEN.
Acknowledgements The authors wish to thank the gastroenterology nursing staff, dieticians and pharmacists at Dudley Group of Hospitals NHS Trust for their expertise and unstinting enthusiasm in establishing this HPN programme in the face of limited resources.
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