Adult short bowel syndrome patients shortchanged

Adult short bowel syndrome patients shortchanged

It is disgraceful that current services for intestinal failure patients are not meeting minimum international standards of care, IrSPEN’s Board member Dr David Kevans tells Valerie Ryan

A centre in Dublin and one or two centres outside the capital, funded at a cost of €4.25 million per year, would provide Irish patients with a dedicated intestinal failure service for the first time, and prevent avoidable complications and deaths, the Irish Society for Clinical Nutrition & Metabolism (IrSPEN) has said.

The Society is calling on the Government to address the absence of a service, and support the provision of a dedicated treatment unit based at three centres for the 80 to 100 patients requiring a model of treatment giving access to a multidisciplinary team (MDT), such as a physician, nursing support and a dietitian and other supports.

Dr. David Kevans

The rate of serious complications for Irish patients attending various centres is elevated, with high rates of sepsis. According to the IMJ study, 77 per cent of people with intestinal failure (which is also known as ‘short bowel syndrome’) experienced at least one major complication, with an 18 per cent mortality rate over the study period.

Dr Kevans believes that rather than requiring an injection of funds, the State would be, in some ways, rationalising delivery into a number of units, which would be — with a more rational utilisation of resources — more cost-effective, and improve outcomes and quality of life.

‘Hub and spoke’ model
The Irish Society’s business plan and the design for the service would be based on existing services in the UK. The concept is that a centre in Dublin would be linked to two other centres in a geographically strategic way, accessible to patients’ homes. This proposed ‘hub and spoke’ model is based on successful models in UK and European countries, with regional centres supp­orting a national centre. Capital expenditure would be required to re-purpose parts of whichever hospitals are selected to provide a dedicated service.

The Society (IrSPEN) has acted as advocate for the establishment of a service, and has been calling on the Government since 2013 to set up a national intestinal failure centre.

Patients experience intestinal failure fol­lowing a range of conditions, and as a result, it makes it difficult for them to come together as a patient advocate group. “Patients have taken a lot of different roads to this condition, and find it hard to advocate for themselves,” Dr Kevans told Irish Medical Times. The Society had high hopes for the development of an adult centre at St James’s Hospital, Dublin, in the 2018 Health Service Executive (HSE) Service Plan.

The very high complication rates for people living with bowel or intestinal failure have been highlighted by IrSPEN as unquestionably linked to the lack of centralised, specialist care in Ireland.

The recurring cost in the business plan for a dedicated unit, estimated at €4.25 mill­ion, would provide 50 per cent of the national need in the short-term, and would need to be expanded within three to five years to meet the full national demand for tertiary specialist care.

Audit of patients
In the IMJ audit of 47 centres, 30 responded and, while 15 had no cases, 15 were providing services to small numbers, and the majority of patients were being treated in Dublin. While the audit captured 67 patients treated in the centres, the Society estimates in any given year there are 80 to 100 patients with intestinal failure.

“There is no standardised reporting on complication rates in these patients, so this audit was conducted to show us how patients fare under the current system,” Dr Kevans said. “The results are very concerning, and confirm that patients in Ireland fare less well than patients in countries with specialist centres such as Denmark, the UK and just a few miles up the road in Northern Ireland.”

He added: “It really is a national disgrace that we knowingly provide a system of care for intestinal failure patients that fails to meet even the minimum standards of care available in Northern Ireland and internationally. We estimate, based on UK data, that there’s a minimum 12 avoidable deaths each year and many more unnecessary complications due to the lack of centralised, specialist care.”

Dr Kevans claimed the Department of Health and HSE are aware of the lack of a service. The HSE is supporting, according to him, a limited arrangement to support a transitional service for paediatric patients from Our Lady’s Children’s Hospital, Crumlin, within the catchment area, moving from paediatric services to adult level. However, this offers no improvement in care for the majority of adult intestinal failure patients around the country who require an experienced multidisciplinary team (MDT) within a specialist unit in line with international best practice.

A national centre is needed to manage the existing patients on home parenteral nutrition (HPN), or those awaiting transition to adult services from the national paediatric unit at Our Lady’s Children’s Hospital.

Patients with intestinal failure can have a really good quality of life and can do very well at home with dedicated multidisciplinary care, and with that, they can avoid hospitalisation and remain safely on long-term intravenous feeding — but this level of MDT care is limited here or does not exist at all, Dr Kevans told IMT.
From the audit, they learned that one-third of Type III intestinal failure patients were receiving HPN as inpatients and this may reflect an underutilisation of HPN, which is 50-60 per cent cheaper when delivered at home. “In general, there is underutilisation in the home of parenteral nutrition in Ireland,” commented
Dr Kevans. “This may be due to a lack of knowledge or patients not being offered parenteral nutrition.”

Serious complications
Parenteral nutrition is complex and demands highly specialised care to avoid serious complications in the home setting, according to the IMJ study.
All tertiary centres in the Republic of Ireland were contacted to assess the prevalence of internal failure requiring parenteral nutrition and complications, over a one year period.

Sixty-seven patients were treated across 15 centres: a period prevalence of 14.6 and 9.6 patients per million for long-term parenteral nutrition and HPN, respectively.
Three-quarters of patients experienced at least one major complication with 18 per cent mortality rate over the study period.

There was an average of 2.9 hospital admiss­ions per patient, each lasting 13 days, adding up to a total of 38 days per patient per year.
Other results show that one-third experienced catheter-related infections. There was also a reduced length of stay during emergency re-admissions in high volume centres (mean 31 v 43 days, p=0.17).

The audit adds that the establishment of a National Centre for intestinal failure/HPN in Ireland is integral to reducing parenteral nutrition-­associated complications.
Based on the costs of an average bed day, IrSPEN estimates a cost to the health service of €34,000 in emergency admissions per year. This is far in excess of the complication rates reported by specialist centres in UK and elsewhere.

Specialist tertiary unit
“This study highlights the complex medical, nursing and nutrition needs of patients requiring home intravenous nutrition. At present these patients are distributed, in small numbers, across many hospitals which prevents an expertise being built up to cater for their needs,” said Dr Claire Donoghue, Specialist Registrar, St James’s Hospital and study author.

“There is a clear gap in services and we are failing to meet their needs. The solution would be to centralise their care in a handful of expert centres, resourced to help these patients thrive and maintain their quality of life.”

The study concludes that the absence of a dedicated national intestinal failure unit for adults represents a significant risk for patients and is contrary to best international practice and consensus guidelines, which highlight the need for national healthcare systems to establish dedicated intestinal failure units that meet specified minimum criteria for service configuration, staffing governance and audit.

In contrast to the Republic of Ireland, Northern Ireland operates a 12-bed intestinal failure specialist tertiary unit for a population of just more than 1.6 million.
The audit stressed that specialist units have expertise in patient selection, operative risk assessment, and multidisciplinary support, such as nutritional input and interventional radiology.

Treatment in a specialist unit has been shown to dramatically improve the morbidity and mortality of this complex condition. Evidence also shows that these units can beneficially affect the continuing dependence on parenteral nutritional support, with potential cost savings.

Within the 67 patients included in the study, it indicates a suboptimal recognition of intestinal failure requiring total parenteral nutrition (TPN). Furthermore, only one centre had a specialist nutrition nurse, a resource that reduces complications and brings cost-savings.

A specialist unit with regional support centres would allow for the streamlining and integration of services for complicated intestinal failure and HPN patients.
Since publishing its initial report on the problem in 2013, IrSPEN has been calling for the HSE to address the lack of a specialist unit for adult patients, despite a highly developed unit for paediatric patients, which has been in place at Crumlin Children’s Hospital since 2000.

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Link to Irish Medical Journal article