Trends in prevalence and growth of artificial nutrition
ETF has continued to be practised more frequently than PN in both hospital (3-5 fold) and in the community (about 30-fold).
At the end of 2000 about 15000 registered patients (adults and children; mainly adults) were receiving HETF and over 400 HPN. These figures represent the minimum number of patients receiving home artificial nutrition in the UK, which has been estimated, with some uncertainty, to be ~20,000 for HETF and over 500 for HPN.
The percent annual growth for HETF appears to be decreasing, but the % growth for point prevalence per reporting centre has remained between 12-19% during the last 3 years for both adults and children.
Trends in age distribution of patients on HETF and HPN
The age distribution of adult patients receiving HETF between 1996 and 2000 has shifted towards the older age range (p<0.001). It has shifted further towards the older age range in those starting HETF relative to those already receiving it (p<0.001). At the end of 2000, patients over 70 years accounted for 51% of all adults on HETF, and those aged 71-80 years (the commonest age band), for 24% of the total.
Adult patients starting HPN also showed a significant shift in age distribution toward the older age range, but only 4.9% were aged over 70years at the end of 2000. Most (51%) were aged 41-60 years.
There were no significant changes in the age distribution of children on HETF or HPN. More than half of the children starting HETF and HPN were <2 years of age.
Trends in organisation and management
Each year between 1996 and 2000, 27-31% of all centres reported that no records were kept on HETF, but in teaching hospitals the figure was higher and progressively increased from 32% in 1997 to 61% in 2000 (chi squared and chi squared for linear trend, p <0.001).
During the same period there was no significant change in the composition or proportion of centres (~40%) with a nutrition support team. Such teams were more likely to be present in teaching hospitals than non-teaching hospitals (67% v 30% in 2000; p<0.001). The composition and role of the teams varied considerably. In 2000, 47% were never responsible for HETF, 17% were never responsible for HPN, and 26-31% met less frequently than once a month.
In 2000 the two established national intestinal failure units were involved in the management of about a third of patients on HPN in the UK. Complex problems in intestinal failure patients on HPN were also managed outside these centres. There are currently no national intestinal failure units for children.
Trends in diagnoses (HETF and HPN)
Each year between 1996 and 2000 disorders of the central nervous system accounted for ~60% of diagnoses in adults established on HETF, compared to ~40% in children (p<0.001). During each year cerebrovascular accident always accounted for 32-35% of the diagnoses in adults established on HETF, and cerebral palsy for 19-20% of the diagnoses in children on HETF.
The commonest diagnostic category for both adults (94%) and children (82-89%) established on HPN was 'Gastrointestinal disorders'. Crohn's disease, which was the commonest diagnosis in adults on HPN, accounted for a progressively smaller proportion of all diagnoses (44% in 1996 decreasing to 34% in 2000; chi squared and chi squared for linear trend p<0.05). In children pseudoobstructive/motility disorders accounted for about 20% of diagnoses but there were no significant changes during the period of study.
Cancer was diagnosed in <5% of adult patients established on HPN, and in a larger and progressively increasing proportion of diagnoses in adults on HETF (rising from 12.0% in 1996 to 17.5% in 2000; p<0.001). The proportion of patients with cancer starting HETF and HPN was even greater. This is because patients with cancer who start HETF and HPN have a shorter duration of feeding than other patients.
Trends in the status of patients after starting HETF and HPN
Although 14% of adults (n=16,247) and children (3,854) returned to oral feeding at one year after starting HETF, mortality whilst on HETF was considerably greater in adults (34%) than children (6%) (p<0.001). In contrast, the one year mortality during HPN was similar in adults (8%) and children (11%). The outcome was strongly affected by the diagnosis.
Mortality during HETF in patients with a CVA progressively increased with age (more than two fold greater in those aged >75 years compared to those 16-64 years; p<0.001 - overall mortality 30% at 1 year), while the proportion returning to full oral feeding decreased with age. The older subjects were more disabled and required more support.
Trends in disability and dependency (HETF and HPN)
Only about 1/6 of adults on HETF undertook full normal activity, compared to 1/3 of children on HETF and 2/3 of adults and children on HPN. Although each year between 1996 and 2000, 51% of adults established on HETF were housebound and bedbound, the proportion requiring total help increased progressively from 49 to 59% (chi squared and chi squared for linear trend, p< 0.001). In contrast, the proportion of housebound and bedbound children was less than for adults, it progressively decreased from 19% in 1996 to 12% in 2000 (p<0.001), and was associated with a smaller requirement for total help (5-6%).
An analysis of paediatric HPN in the UK suggests that insufficient psychological support is given to families involved with HPN.
Trends in location of feeding and use of home care companies
About 55% of adult patients starting HETF lived in their own home and 40% in nursing homes, with little change in distribution between 1997 and 2000. Virtually all adults starting HPN and children starting HPN and HETF lived in their own homes.
Between 1998 and 2000 home care companies provided services to an increasing proportion of patients starting home artificial nutritional support: from 60 to 74% of adults starting HEFF (p<0.001); from 75 to 88% of adults starting HPN (p<0.05); from 57 to 63% of children starting HETF (p<0.05); and from 90% (1999) to 100% in children starting HPN.