Journal of the New Zealand Medical Association, 17-October-2008, Vol 121 No 1284
Benchmarking home parenteral nutrition in Scotland and New Zealand: disparities revealed
Lyn Gillanders, Janet Baxter, Patrick Ball, Arend Merrie, Ruth F McKee
Home parenteral nutrition (HPN) is a low-volume high-expenditure treatment which allows some patients with inadequate intestinal function or an inaccessible intestinal tract to sustain nutritional and fluid status while remaining at home.1 Monitoring characteristics, standards of care, and outcomes of HPN patients varies worldwide with some European centres maintaining comprehensive ongoing records through to no national reporting in other countries with similar health standards.2
The Scottish Home Parenteral Nutrition Managed Clinical Network (SHPNMCN) has been in existence since 2000 and has maintained an HPN register as part of its activities.1 The New Zealand (NZ) register was started in 2004 as part of an initiative by the Australasian Society of Parenteral and Enteral Nutrition (AuSPEN) to develop an Australasian HPN register.3
The AuSPEN Register was developed in conjunction with the SHPNMCN to allow annual benchmarking. The NZ portion of the register obtained ethical approval in NZ for patients to consent to annual data collection.
Early comparison of register data between NZ and Scotland revealed that patient numbers were much greater in Scotland. This survey was designed to see if underlying diseases leading to provision of HPN were different between Scotland and NZ.
HPN registers for Scotland and NZ were examined early in 2006 for patients who received HPN in each country during 2005 together with the indications for provision of HPN.
To allow direct comparison rates of utilisation, the underlying diseases were mapped to the relevant ICD-104 diagnostic classification for digestive diseases. Although both registers include children only adults (18years and over) were included in this analysis.
Rates of provision of HPN in 2005 were much higher in Scotland (71 patients vs 14 patients) as shown in Table 1.
Table 1. Rates of provision of home parenteral nutrition (HPN) in Scotland vs New Zealand
The diagnostic categories for the 2005 HPN patients were similar in both countries (Figure 1)
Figure 1. Comparison of the diagnostic categories between Scotland and New Zealand (NZ) HPN patients
There is wide variation in practice throughout the world in relation to patient selection for HPN. Within Scotland and NZ patient referral patterns appear to be inconsistent. Some regions in both countries have very few HPN patients. This variation may reflect availability of treatment as well as differences in prevalence of diseases such as Crohn’s disease in different areas.
The prevalence of HPN patients in the UK as a whole is approximately 5/million, although this is probably under-reported according to the British Artificial Nutrition Survey (BANS) Register.5 The BANS Register also shows that the prevalence of HPN patients in Scotland is similar to regions in the United Kingdom which have recognised intestinal failure units. The UK prevalence varies from 6.2/million to 16.2/million patients. In Scotland the prevalence is 14/million5 and in NZ it is 3.4/million.3
The requirements for the safe delivery of HPN have been outlined both by the National Institutes for Clinical Excellence6and the SHPNMCN.1 Patients should be supervised in units where there is experience in the management of HPN, as well as knowledge and experience in the management of intestinal failure. Units providing this service should have a nutrition support team with at least a clinician, pharmacist, specialist nurse, and dietitian.
The widespread geographical areas of Scotland and NZ make it difficult for patients to travel to recognised centres of expertise for their treatment and some large centres have developed outreach services including protocols and standards of care. When the NZ arm of the Australasian HPN register was established, the SHPNMCN was recognised as a model with established expertise in collection and publication of standards of care and HPN protocols.
Scotland and NZ have similar public health systems, demographics, and population (Table 2). In addition, in NZ the Health Practitioners Competency Assurance Act (2004) introduced the ‘comparable health system’ path to registration of medical practitioners—a list of 22 countries (including Scotland) regarded as similar to NZ on indicators such as life expectancy and infant mortality.7 The similar population sizes in each country together with these other factors thus make inter-country benchmarking for a specialist service such as HPN a reasonable process, particularly from the NZ perspective.
Table 2. Demographics compared: New Zealand and Scotland
The diagnostic categories for the 2005 HPN patients were similar in both countries and are also broadly similar to some other European countries according to older data in a survey preformed by the ESPEN-HAN group between December 1998 and March 1999.10 Nine centres in five European countries participated in this study including only patients with benign diseases who had been receiving HPN for at least 2 years. This survey included 228 adult patients including 141 females and 87 males, with a median age of 49 (19–92) years. The underlying conditions were:
Crohn’s disease was the leading diagnostic category for both Scotland and NZ, although the small numbers in NZ make this a more uncertain conclusion. The nature of Crohn’s disease can lead to many surgical resections and thus intestinal failure as a result of short bowel syndrome.11 Some studies have reported an incidence of short bowel syndrome associated with Crohn’s disease of between 0.1 and 4%.12,13
Inflammatory bowel disease, especially Crohn’s disease has increased greatly over the last 50 years. It was estimated recently that the incidence of Crohn’s disease was 0.7–14.6 per 100,000 population in Europe and North America.14 A recent survey in NZ has shown that Crohn’s disease incidence and prevalence in the Canterbury region are amongst the highest ever reported.15 Scottish data is older16 but the pattern appears similar in the north-eastern region of Scotland (Table 3). A more recent review of Crohn’s disease in the east of Scotland confirms this data.17
There are large differences in the rates of provision between Scotland and NZ which are difficult to explain on the basis of demographics, healthcare systems, and population. Crohn’s disease is most likely the leading cause of intestinal failure in both countries and the prevalence and incidence is high in both countries. Whilst enteral feeding is a common method of nutrition support it is not a successful means of support in the setting of intestinal failure and therefore cannot account for the disparity seen. Thus the indications are similar and in comparison with other European countries such as Italy18 provision of HPN for cancer is rare.
Table 3. Comparison of point prevalence of Crohn’s disease
On this basis, it would be reasonable to assume that HPN use should be similar, particularly for Crohn’s disease. These results lead to the question of whether there is over-utilisation of HPN in Scotland or under-utilisation of HPN in New Zealand.
This is not a straightforward question to answer. The Scottish HPN network has adhered well to guidelines about patient selection for HPN.19 The prevalence of HPN in Scotland is also similar to that in the areas around the two large intestinal failure centres in England and Wales.5
Although it may be that the lower prevalence in New Zealand is due to more emphasis on enteral feeding, it is possible that there is under-utilisation of HPN in New Zealand. This might be due to a lack of recognition of the indications for HPN, conservative attitudes on the part of clinicians or under-resourcing of nutrition support and nutrition support teams.
Despite similar demographics, healthcare systems, and population size, HPN is utilised to a significantly lesser extent in NZ compared to Scotland. The reasons for this difference are not clear. There may be different rates of the underlying indications for HPN although they are similar for Crohn’s disease.
It is possible that there is lack of recognition of the need for HPN and/or under provision of HPN, which may lead to poorer treatment outcomes for New Zealanders. Ongoing prospective registration of HPN cases and benchmarking with networks such as the SHPNMCN will clarify this situation further.
Competing interests: None known.
Author information: Lyn Gillanders, Senior Clinical Dietitian, Nutrition Services, Auckland City Hospital, Auckland, New Zealand; Janet Baxter, Network Manager and Dietitian, Scottish HPN Managed Clinical Network, Ninewells Hospital, Dundee, Scotland; Patrick Ball, Foundation Professor of Pharmacy, Charles Sturt University, Wagga Wagga, NSW, Australia; Arend Merrie, Consultant Colorectal Surgeon, Auckland City Hospital, Auckland, New Zealand; Ruth F McKee, Consultant Colorectal Surgeon, Glasgow Royal Infirmary, Glasgow, Scotland
Correspondence: Lyn Gillanders, Senior Clinical Dietitian, Nutrition Services, Private Bag 92024, Auckland Mail Centre, Auckland 1142, New Zealand. Fax: +64 (0)9 3775075; email: firstname.lastname@example.org
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