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.

An analysis on selected topics was undertaken using information gathered from the British Artificial Nutrition Survey between 1996 and 2002.

Trends in Home Enteral Tube Feeding

  • The numbers of patients on HETF has continued to grow between 1996 and 2002, although the growth has slowed in the last 12 months. The total number of adults and children receiving HETF in the UK at the end of 2002 was estimated to be in the region of 22,000-27,000.
  • The number of new patient registrations over the age of 60 years is increasing. 78% of those over 60 years require some or total help. This older and more dependent adult population has implications for healthcare resources.
  • Data from the annual BANS survey in 2002 demonstrates that arrangements for follow-up and monitoring of patients receiving HETF are made prior to discharge by 84% of centres.
  • There has been a steady rise in the use of commercial home delivery companies for both adults and children, with approximately 82% of new HETF patients using this type of service in 2002.
  • Under-reporting remains an area of concern to the BANS Committee. Given that the majority of HETF patients are registered on commercial systems, a working partnership with such systems should be explored to facilitate more accurate and complete data collection.

Trends in Home Parenteral Nutrition

  • The number of patients on HPN continues to show some growth and it is estimated that the number of adults and children on HPN at the end of 2002 in the UK was at least 600.
  • Point prevalence increased from 490 to 533 between 2001and 2002 (approximately 9%).
  • It appears that there is large regional variation in the UK in the provision of HPN to both adults and children. It is of concern that the equity of access to present services is variable and that standards of care differ according to geographical location, workload and experience.

In-patient Parenteral Nutrition

  • In 2001, BANS noted that only 34% of registering centres responding to the annual survey audited infection (catheter-related sepsis). The situation has not improved in 2002 with catheter sepsis rates being audited in only 32% of responding centres.
  • The incidence of catheter-related infection tended to be higher where there was no NST (13.5% versus 7.7%), but this figure was not statistically significant.

Patients with Cerebral Palsy and Cystic Fibrosis receiving HETF

  • The number of children with cerebral palsy registered on BANS has increased from 348 in 1996 to 783 in 2002 (point prevalence). In contrast, the number of children registered on BANS with cystic fibrosis has changed very little and remains around 180 (point prevalence), while the number of registered adults with cystic fibrosis has almost doubled.
  • The proportion of children with cerebral palsy receiving nasogastric feeding at home has increased steadily, while gastrostomy feeding has declined, the trend also being observed in all children receiving HETF. Prolonged survival in children with cerebral palsy means there is an increasing demand on healthcare resources and survival to adulthood means that transfer of care to adult services must be addressed. In 2002, 783 children and 551 adults with cerebral palsy were registered on BANS (point prevalence).

Preface

About BANS, the British Artificial Nutrition Survey

The BANS was set up as a committee of BAPEN in 1996 to collect and analyse data pertaining to enteral and parenteral nutrition support in adults and children in hospital and the community. The BANS committee reflects the multidisciplinary nature of BAPEN as shown in the list of committee members on inside back cover. An annual report is published each year and copies can be obtained from the BAPEN office. Executive summaries are available on the BAPEN website, www.bapen.org.uk

BANS is registered through BAPEN under the Data Protection Act. To avoid duplication of reported patients, reporters are requested to supply only the initials, date of birth, sex and the first part of their postcode. Without this level of detail, it is not possible to be certain of the accuracy of our data. The chair of BANS would like to express on behalf of the committee his gratitude to all those reporters who make this unique venture possible. We hope that all centres in the UK will report to BANS so that a complete picture of artificial nutritional support can be obtained each year.

We have again focused on certain specific aspects of nutritional care. For the first time, we have produced national data for each constituent country in the UK. For Adult HPN, we have derived prevalence data by Strategic Health Authority. We are very grateful to Pat Howard and Ann Micklewright for providing independent adult and paediatric enteral data from the former South / West and Trent “regions”. There is reassuring corroboration of BANS data. This is particularly important because we recognise the reality of a shortfall in data collection for a number of reasons. The BANS committee is striving to maximise the potential of BANS data but will continue to depend on the goodwill of almost 400 reporters across the UK.

Provision of HETF appears to be under resourced and future funding arrangements provide no reassurance of improvement. There are still too many patients receiving nutritional care outside of a proper multidisciplinary team environment.

This years BANS data have again identified how much is still to be done to ensure equity of access and high quality care across the UK for both adults and children on home enteral or parenteral nutrition. BANS would like to encourage data on standards of care in its next report.

Finally, BANS and BAPEN remain disappointed by the reluctance of central government to provide financial support for the only ongoing national nutritional audit.

Dr Barry JM Jones,
Chair of BANS, April 2005

Executive summary

In this years report, we have concentrated on data accrued since 2000. Data prior to this date have been published in previous reports. Whilst every effort has been made to ensure that data are as complete as possible, BANS acknowledges that there are variable shortfalls in some of the data due to under reporting or lack of postcode identifiers. All data referred to in this report therefore relate to registered patients and those whose origin can be identified by post code. These data represents minimum levels of activity, not maximum. Reference will be made in the text to the reliability of the data in terms of completeness of data collection and interpretation.

Trends in Adult Home Enteral Tube Feeding (HETF)

  • The period prevalence of adult patients on HETF grew by 8% during 2003 and the number of centres reporting point prevalence (319) and period prevalence (325) to BANS remained essentially constant. By contrast, the number of centres reporting new patients has fallen since 2000 from 275 to 251 in 2003.
  • There were 6585 new adult HETF registrations in 2003, with 16890 receiving HETF at the end of 2003 (point prevalence) and 21028 recipients during 2003 (period prevalence). New registrations have levelled out whereas point and period prevalence continue to rise (11 and 8% respectively since 2002).
  • In 2003, 84% adult HETF patients were resident in England, 7% in Scotland, 3% in N. Ireland and 6% in Wales (point prevalence). Growth in point prevalence from 2000 to 2003 has been similar in all of the constituent countries of the UK (43%, 39%, 38% & 46% respectively).
  • Period prevalence per million population varies in the 4 constituent countries of the UK (England: 359, Scotland:315, N. Ireland: 414 and Wales 386).
  • The number of patients per reporting centre rose from 50 in 2000 to 65 in 2003 (period prevalence), although new registrations remained constant at around 25 per reporting centre over this period of time.
  • The major diagnostic groups associated with new registrations for HETF were neurological diseases (58%) and gastroenterological disorders, 23%. Cerebrovascular accident accounted for 32% of new diagnoses, neoplasia 30% and dementia, 4%.The period prevalence of demented patients has increased from 341 in 2000 to 547 in 2003 and there were 254 new registrations for dementia in 2003. The increase in HETF of dementia has occurred despite increasing awareness of the ethical dilemmas associated with accruing evidence that HETF does not improve outcome.
  • Outcome of adult patients 1 year after starting HETF reveals 36% mortality, 46% continuing on HETF and 16% returned to oral feeding.
  • Gastrostomy continues as the most common access route with 85% receiving HETF via a gastrostomy, 12% via nasogastric tube and the remaining 3% via a jejunostomy (point prevalence).
  • 45% of adults on HETF were >70 years of age and 30% were bed bound with only 19% having normal activity. 35% live in nursing homes and 75% require either total or some help with their HETF (point prevalence).

Trends in Paediatric Home Enteral Tube Feeding

  • There has been a steady rise in paediatric HETF (period prevalence 4437 in 2000 rising to 5394 in 2003, a growth of 22%). This increase is not due to new registrations but to continuing cases.
  • Centres reporting new patients rose from 155 in 2000 to 170 in 2002. Of some concern is a fall in the number of centres reporting to 149 in 2003. There was a similar pattern for those reporting point and period prevalence data between 2000 and 2003.
  • Diagnostic categories do not define the largest group of children with "other" causes. BANS will address this problem next year. Cerebral palsy remains the single largest identifiable group at 19% of children receiving HETF at the end of 2003.
  • Full activity was achieved in only 38% and limited activity in 52% while 91% were cared for in their own home (point prevalence).
  • Nasogastric feeding (68%) is more common than gastrostomy (31%) in newly registered children but gastrostomy becomes the most common route of access (54%) in established patients compared to nasogastric tubes (45%) and jejunostomy (1%). This is in contrast to the practice in adults and may reflect inadequate access for gastrostomy insertion in some areas.
  • Mortality 1 year after first registration was 7%.

Trends in Adult Home Parenteral Nutrition (HPN)

  • New registrations were constant between 2000 and 2003 (117), whereas period (517) and point prevalence (572) rose by 11 and 9% respectively since 2002. For both Adult HPN and HETF, new registrations have stabilised but point and period prevalence have yet to reach a steady state, However, the rise in adult HPN is slowing down as is the case for HETF.
  • These trends in HPN are similar to those reported by the Scottish Managed Clinical Network which is believed to capture data on 100% of HPN patients in Scotland.Over the last 8 years that BANS has been collecting data, BANS has records of 83 centres registering HPN patients. Since 2000, 22 of these have registered no patients and 31 have registered only a single patient. Only 15 have registered >6 and 4 >20. The 2 national intestinal failure centres account for only 38% of the total new registrants since 2000. These figures have implications for quality of care and planning of Adult HPN services, particularly in England.
  • Period prevalence by country varies from 4.5 per million population in Wales to 14.3 per million in Scotland, 12.5 per million in N Ireland and 9.5 per million in England.
  • There is considerable variation in the period prevalence of adult HPN between the new Strategic Health Authorities (0 - 50 patients per million UK population and 1 - 21 per million in England).These variations greatly exceed those of the conditions such as Crohn’s disease or small bowel infarction for which HPN is required. Similar data exists for Scottish Health Boards.
  • Commercial home delivery companies now provide 93% new patients with their supplies.
  • For new registrations, Crohn’s disease is the commonest diagnosis (24%) and short bowel syndrome the most common indication (36%). Cancer remains a small minority of new UK HPN patients (12%).
  • 87% of new registrants live in their own homes, 77% are independent and 97% retain full or limited activity.

Trends in Paediatric Home Parenteral Nutrition

  • The number of children starting (11) and continuing (71) on HPN in 2003 is similar to the previous 3 years. However, due to the small number of reporting centres, caution should be taken when extrapolating these data.
  • Of 20 reporting centres registering patients in 2003, only 5 centres had more than 3 patients (point prevalence). Case mix varies between centres making direct comparisons difficult.
  • There is a need to encourage more centres to report to BANS in order to produce data that truly reflect current practice.
  • Mortality 1 year after starting HPN was 10% in 2003.

Independent Adult and Paediatric HETF data

  • Data collected independently in the former South and West (S&W) Region, and Trent Region, reveal large variations in prevalence of HETF in adults and children.
  • Point prevalence in the S&W region ranged from 82-632 per million population and in Trent was between 211- 484 per million for different constituent areas within each region. BANS does not have explanations for these variations. Incomplete reporting, case mix, demography, proximity to major centres and availability of community based nutritional support may all contribute.
  • Overall point prevalence for S&W was 331 per million and for Trent, 354 per million. These compare favourably with data collected by BANS, with a reported point prevalence for the UK of ~367 per million.

Reporters and centres

  • Of the 411 reporters registered with BANS 356 were active in 2003. Steps are being taken to identify those reporters who have become inactive and where appropriate to re-engage them. Many are redundant due to closure of centres or have already been replaced by other active reporters. There are currently 325 centres reporting data on adult HETF, 83 on adult HPN, 149 on paediatric HETF and 20 on paediatric HPN.

Organisational issues

  • A revised annual questionnaire was sent to 380 BANS reporters. Responses were received from 151 adult reporters and 99 children’s reporters, some of whom reported for both adults and children. These reporters represent approximately 12000 adults and children compared to an estimated total in the UK of 25000 – 27000.
  • There appears to have been a higher proportion of nutrition support teams (NSTs) in this incomplete and perhaps unrepresentative sample than recorded in previous reports. 55% of responding adult centres and 27% of children’s services had a team in 2003 as defined by BAPEN.
  • A small minority provide for both hospital and community support.
  • Clinicians and dietitians were involved in all of the respondents’ teams.
  • Teams still have problems with funding of nurses and speech and language therapists.
  • Training of HETF carers and patients is diffused among many different health care professionals.
  • Dietitians are the professionals most involved in managing HETF services and as BANS reporters.
  • Only 13% of adult HETF and 29% children’s reporters felt staffing levels were adequate.
  • 52% respondents identified a need for more dietitians. Since the majority of reporters are dietitians, reporter bias may have influenced this figure.
  • Monitoring of HETF appears to be haphazard with no agreement on optimal care.
  • The impact of future NHS funding arrangements on provision of HETF services is unclear.

BANS Plans for future

  • The committee believe the data are an important national resource and the best available on a national basis. However, we are not complacent and a number of measures are being taken to address concerns expressed by reporters, the BANS Committee and BAPEN that there are shortfalls in the number of registrations from across the UK.
  • We are exploring the feasibility of electronic reporting as a means of simplifying the reporting process and ensuring more accurate data returns and report generation. This concept was welcomed by the majority of reporters following a survey undertaken in 2003.
  • A shift of emphasis to assist hospital nutrition teams collect data on aspects of in patient enteral and parenteral nutrition is planned for next year. Central venous catheter sepsis rates will be targeted, so please start to collect your data!

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