National Intestinal Failure & Rehabilitation Service (NIFRS)

The NIFRS is provided by a small team of dedicated clinicians working at Auckland District Health Board. The team are available to provide advice and support for clinicians across New Zealand caring for patients with intestinal failure.

Aim of the service

To improve and achieve care consistency and equitable outcomes for people with intestinal failure throughout New Zealand.

What is intestinal failure?

Intestinal failure is defined as a dependency on intravenous nutrition (IVN), which is also called parenteral nutrition (PN). Any fluid that contains amino acids (excluding blood products) delivered intravenously is considered to be intravenous nutrition.

Intestinal failure is the inability of the body to maintain adequate nutrition via the intestine, and is a complication of a diverse group of disorders. Intestinal failure results from prolonged or intractable obstruction of the bowel, abnormal bowel action or absorption, surgical removal of a significant portion of the bowel, or congenital defects.

Intestinal failure in adults is classified according to the type of care needed to treat the condition.

  • Type 1: self-limiting, short term failure – this can be routinely managed within a secondary or tertiary care setting.
  • Type 2: prolonged intestinal failure usually associated with infection and metabolic complications where patients require life sustaining parenteral (intravenous) nutrition for longer than 20 days.
  • Type 3: long term intestinal failure, with people who are usually stable and able to be managed at home with parenteral nutrition.

For children, the above disease type classification is not used as it is difficult to determine the time course of intestinal failure. Some children, especially those with short bowel syndrome, have the ability to improve over time while others develop long-term or progressive intestinal failure. Due to the unique nutritional requirements of growing infants and children, parenteral nutrition support for children with intestinal failure is often prolonged.

Appropriate treatment for intestinal failure has a positive impact on morbidity and mortality. People may be successfully rehabilitated off parenteral nutrition, resulting in significant quality of life improvement.

About the NIFRS

The NIFR Service was established to improve patient outcomes and quality of care for people with intestinal failure through implementing a coordination system to strengthen local and regional clinical networks, and to establish service performance and clinical outcome measures, and service protocols.

To improve outcomes for IF patients the NIFRS

  • Developed and maintains a register of all patients with intestinal failure to collect data which helps the service to understand patient outcomes and informs quality improvement.
  • Implemented  and updated a notification and referral process  for patients with IF. Referral may result in a virtual consultation, clinic assessment or inpatient transfer. Care for most patients is delivered by their local care team in partnership with the NIFRS, meaning the patient remains cared for in their home DHB wherever possible.
  • Implemented a shared care & service coordination model to help with communication between clinicians and patients. Shared care is structured and inclusive care which is developed in partnership between the patient, their family/carers and health professionals.
  • Published National standards and guidance to help to ensure high quality care for all patients with IF.
  • Established a Clinical network, to support workforce development and knowledge pertaining to intestinal failure and rehabilitation
  • Maintains an active research agenda, participation in research includes collaboration with other international centres, and innovation partners such as the insides company. Paediatric NIFRS has contributed to the pilot Paediatric International Intestinal Failure (IIFR)  registry and has been selected as a site for the now formalised IIFR registry from 2022.
  • Education resources continue to be developed for both patients with IF and the clinicians caring for them.

Service requirements

Core aspects of the service are to support high quality care and outcomes through the following activities.

  • Clinical leadership to support regional clinical teams in managing people with intestinal failure so that people with intestinal failure have improved quality and consistency of care. This is achieved through:
    • providing clinical advice and expertise for referred patients through multi-media techniques
    • strengthening and supporting clinical networks comprised of multi-disciplinary teams at a regional and national level
    • support the assessment, referral and post-transplant care of patients who would benefit from intestinal transplant.
  • Service coordination to facilitate access to appropriate care and services for people with intestinal failure. This is achieved through:
    • acting as a point of contact and navigator for clinicians requesting support with managing patients with intestinal failure
    • providing a care coordination/care continuity model so that patients receive streamlined, integrated and high quality care
    • supporting the implementation of standardised care plans and documentation for patients with intestinal failure
    • facilitating access to education resources and training for regional providers of intestinal failure care
    • supporting the collection, maintenance and use of information on patients registered with the service that meet the definition of intestinal failure.
  • Developing and disseminating referral pathways and management protocols for prolonged intestinal failure (Type 2 and 3) in adults and children to optimise gut rehabilitation and return to oral or enteral nutrition.
  • Developing indicators that will assess patient outcomes.

Standards, guidelines and pathways

The NIFRS across the lifespan guidance is hosted by the Starship Clinical Guidelines site. The web-based format allows the service to update advice as practice and expertise evolves. 
Find guidance documents including both adult and paediatric practice recommendations (Starship hospital)

Papers and reports

The following papers have been developed by the NIFRS.

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