This chapter details the prevalence of characteristics in the HPN population registered with C&V UHB.
In more detail, this chapter:
Performed a cross-sectional analysis of the HPN population registered with C&V UHB
Described and evaluated the characteristics of the cohort population of LT HPN patients from a single point in time with particular reference to their:
Patient-related factors Disease-related factors PN-related factors
Co-prescribed medicines
Compared findings with results from other HPN population studies
3.1.2. Background and rationale
As mentioned previously, the point prevalence for HPN patients in the UK was most recently documented by BANS as 8.40 per million and the period prevalence as 10.02 per million over the year 2011 (Smith et al. 2011). A modest incidence by comparison to statistics reported in Europe where point prevalence has been reported to range extensively from 3.25-66 per million, yet the UK reports a similar point prevalence to the nations of New Zealand and Australia (Baxter et al. 2012). In general, countries with higher point prevalence (e.g. Denmark, Italy) presumably have greater standards in terms of patient referral pathways, access to HPN services, HPN education programmes and implementation of PN guidelines. Within the publication by Baxter et al. (2012) it was recognised that for countries with lower point prevalence (e.g. France, Spain) HPN registries were not fully available or implemented resulting in potential HPN under-reporting. It is clear to see that developments are necessary in gaining a universal standard for access to
equitable care in terms of HPN services across Europe. Interestingly, the prevalence of patients receiving HPN in South Wales has grown significantly in proportion to the last reported UK statistic and other documented demographics (Smith et al. 2011). The South Wales IF centre (managed within C&V UHB) reported a growth in service from 7.3 per million of the population in Wales (2001) to 35.9 per million as of March 2015 (personal communication, Barney Hawthorne & Amelia Juckes 2016). This is an impressive feat considering their initial target of 10-15 per million. The population supported in Wales by the Cardiff IF team (in terms of number patients per million of the population in Wales) therefore overtook the reported point prevalence statistic for the whole of the UK in 2011, according to the data published by BANS (Smith et al. 2011). However, the subsequent BANS report in 2016 noted an increase in new patient registrations for the UK to be predominantly attributable to new registrations within England (Smith and Naghibi 2016). In general, the statistics from the BANS reports detail a significant growth in service provision in UK over the last two decades and an increasing number of patients commenced on HPN, suggesting better patient access to HPN services. However, the reported statistics from BANS should be interpreted cautiously in light of significant under reporting of HPN cases. In terms of the distribution of HPN patients across Wales, the majority reside in South Wales with most patients living close to Cardiff; alongside a smaller minority in North Wales. Reasons for this are thought to be that patients in North Wales are catered for by the geographically closer HPN centre in Salford, Manchester. Anecdotally, it has been known for patients to uproot so that they can reside within closer proximity to HPN centres (personal communication, Amelia Juckes 2016).
Although the number of patients who require LT HPN actually constitute a small proportion of all patients who receive parenteral feeding, the LT nature of their nutritional therapy marks these patients as major service users and a
30 days. Otherwise showing that the remaining percentage of patients constituted LT PN service users with types 2 and 3 IF (Stewart et al. 2010). The financial implications in Wales are demonstrated in the criteria for eligibility for funding and access to HPN treatment from the policy published by the Welsh Health Specialised Services Committee (WHSSC). The policy describes that funding for PN services is only permitted for patients who are awaiting reconstructive surgery (leading to restoration of gut continuity and function) or those with irreversible IF. WHSSC also funds nursing assistance for those unable to administer HPN for themselves. This funding is only available for patients in Wales via referral from the nutrition teams at either UHW or Hope hospital.
Although HPN is a vital and life-sustaining therapy in these patients, its use carries risks and complications that influence patient morbidity and prevalence statistics. A snapshot of the prevalence data from a single point in time will show the patient characteristics and requirements for the HPN population.
Few studies of population review have been performed in the field of HPN, presumably because they rely on voluntary and time-consuming data capture. Also, the logistics of data collection require considerable co-ordination between HPN centres within a unified area. However previous epidemiological studies have been performed by a harmonised and merged HPN special interest group called the Home Artificial Nutrition and Chronic Intestinal Failure (HAN & CIF) ESPEN Special Interest Group. This group performed multi-centre surveys for the prevalence of patients registered as having started HPN in the main HPN centres in Europe (Van Gossum et al. 1996; Bakker et al. 1999; Staun et al. 2004; Ugur et al. 2006). It was notable from these studies that the prevalence of HPN patients was highest in countries having the longest duration of HPN experience (Denmark, France and the UK). In the last decade there have been no new studies further investigating incidence and prevalence of HPN in Europe apart from Baxter et al. (2012) whose survey provided a global figure of HPN use in 9200 patients from 16 countries, in the year 2010. They also showed a large variation in point
prevalence of 3.25-66 patients per million of each population; but could not explain the varied result beyond differences in practices, expertise, interest, attitudes or economic provision of service. However it was recognised that HPN prevalence was under-reported in several countries.
One of the studies performed by the HAN & CIF special interest group, a survey performed in 1997, reported on the HPN prevalence, distribution of disease and health outcomes from HPN patients in Europe. They found the distribution of underlying diseases requiring HPN to be similar within Europe and the USA (Bakker et al. 1999; Howard and Ashley 2003). However, it is known that within Europe the distribution of underlying disease is more variable by comparison to USA. According to data from a survey performed in 1997 (Bakker et al. 1999), at the time the most common leading diagnosis for HPN patients in the UK was Crohn’s disease, which was not in line with data from The Netherlands and Italy where cancer was the most common underlying disease state (Van Gossum et al. 1996; Smith et al. 2011). The data show differing approaches on the continent to sustain patients with PN therapy in those suffering from cancer diagnoses, in what is considered a contentious topic for clinical debate. Yet still, the UK statistic for new HPN registrations in 2010 was at 14%, up from 5% in 1997 (BAPEN report unpublished data; www.bapen.org.uk). Less than the European figure stated by Howard (2006) where as many as 40% of patients on HPN have cancer as a primary diagnosis. The variability in numbers of cancer patients treated with PN therapy suggest that there is a lack of strong evidence or direct guidance for treating these patients. The surveys performed by HAN & CIF ESPEN Special Interest Group have also explored PN-related parameters including the number of perfusions (feeds) and the types of feeds administered (aqueous/lipid) to the patients. Previous research relating to the HPN service in Wales focused on its growth throughout the early 2000’s and gave a brief overview of patient demographics (Jukes et al. 2010; Srinivasaiah et al. 2010). The present study
particularly in terms of the patients’ diagnoses, indications and HPN requirements. The information from this study has not previously been published in such depth; and hence represents the most recent and accurate data for the sample population to draw comparisons to the findings of other similar studies.