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A managed clinical network for home parenteral nutrition

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VOL: 98, ISSUE: 10, PAGE NO: 49

Jan Tait, RGN, RM, is nurse practitioner, gastroenterology;Janet Baxter, MPhil, SRD, RNutr, is coordinator of the HPN Network, Department of Digestive Diseases and Clinical Nutrition, Ninewells Hospital and Medical School, Dundee

Patients who have inadequate intestinal function require parenteral nutrition (PN). Those with chronic intestinal failure - where they are unable to maintain fluid volume or nutritional status - may require home parenteral nutrition (HPN). This was introduced into the UK in the late 1970s; previously the alternatives were a prolonged hospital stay or multiple admissions for intravenous nutrition. The mortality rate of patients with intestinal failure was high, due to dehydration and malnutrition.
Patients who have inadequate intestinal function require parenteral nutrition (PN). Those with chronic intestinal failure - where they are unable to maintain fluid volume or nutritional status - may require home parenteral nutrition (HPN). This was introduced into the UK in the late 1970s; previously the alternatives were a prolonged hospital stay or multiple admissions for intravenous nutrition. The mortality rate of patients with intestinal failure was high, due to dehydration and malnutrition.

The incidence and prevalence of HPN is increasing both in Europe (Van Gossum, 1999) and in the USA (Howard, 2000). There are currently approximately 75 patients receiving HPN in Scotland. Data from the British Artificial Nutrition Survey (BANS, 2001) suggests that there are at least 500 patients in the UK.

The administration of HPN involves highly complex procedures. It is time-consuming and places great demands on the patient and carer. The treatment is also expensive (Richards and Irving, 1996) and can be associated with life-threatening complications.

Moving patients who are receiving PN from hospital to home has resulted in a significant improvement in their quality of life (Carlson and Richards, 2001) and, once at home, it has been shown that patients who are carefully managed can enjoy a reasonable quality of life independent of hospital (Richards and Irving, 1997).

The duration of treatment is variable: some patients with intestinal failure may adapt to enteral feeding or oral diet (Nightingale, 2001), while others require long-term HPN. The use of small-bowel transplantation can be considered for such patients. However, at present this is generally reserved for patients who have irreversible PN-related complications or limited venous access.

The safe and effective treatment of patients receiving HPN requires the multiprofessional expertise of specialist nursing staff, dietitians, pharmacists, clinical biochemists and medical staff. The requirements for successful management of these patients has been outlined by the British Association for Parenteral and Enteral Nutrition (Wood, 1995).

Development of the network
It is widely accepted that patients receiving HPN should be supervised in units where there is experience and knowledge in its use (Pennington, 1996). The team requires experience in the prevention and treatment of disease and HPN-related complications. This can be achieved by establishing one specialised centre. However, in Scotland this would present difficulties because of the wide dispersion of patients throughout the country. One centre would be unable to provide emergency treatment for all and would cause inconvenience for patients who may be required to travel long distances for follow-up.

To avoid centralising the management of patients requiring HPN, and allow treatment to be delivered as near to the patient's own home as possible, it was decided to set up an HPN network in Scotland. The network would support the local teams looking after these patients and allow them to be managed in their local hospital with access to the larger hospital for patient training, advice and guidance. It has been demonstrated that there is a learning curve for new centres responsible for HPN patients, as the early years are often marred by unacceptable complications (Johnson et al, 1994). Therefore it is important for new centres to build on the experience of established centres.

In 1998 the NHS in Scotland undertook a review of its acute services. The development of managed clinical networks was the single most important recommendation of the Acute Services Review (Scottish Office, 1998).

A managed clinical network (MCN) is a formally organised group of clinicians who aim to adapt performance on the basis of standards and guidelines. Networks are intended to improve delivery of services by changing attitudes in working practice (NHS, 1999). The provision of HPN is one such service where multiprofessional working already exists.

Structure of the network
The network was launched in 2000. It has a coordinator whose remit is to identify HPN centres and patients, to disseminate protocols, procedures and standards and to collect and analyse audit and research data. A paediatric group is included within the network. While the same protocols, procedures and standards apply, a slightly different set of audit data will be collected to reflect the requirements of the paediatric service.

The aims of the network are:

- To ensure equity of access;

- To ensure that patients are managed according to evidence-based, nationally agreed procedures and protocols;

- To enable financial savings to be made via national contracts.

Catheter care protocols and procedures

Complications associated with HPN include catheter-related problems, electrolyte imbalance and metabolic disease such as liver and bone abnormalities. The most frequent complications are related to the central venous catheter, with catheter-related sepsis being the most common complication resulting in admission to hospital (Van Gossum et al, 2001). The rate of catheter sepsis appears to be related to how well patients are trained in HPN techniques, and effective patient training is often related to the skill and experience of the nurse specialist (Richards et al, 1997).

The aim of the network is to optimise patient management by the use of nationally agreed evidence-based protocols and procedures. These were developed by the nurse specialists in collaboration with the network members (Tait et al, 2001). Best practice was agreed by the group on the basis of current literature, expert opinion and audit data.

Quality assurance
An integral part of managed clinical networking is the existence of a quality assurance framework, which is acceptable to the Clinical Standards Board for Scotland (CSBS). The CSBS is an established special health board whose remit is to develop and run a national system of quality assurance and accreditation of clinical services. There are two key components of a quality assurance framework: a set of standards and agreed arrangements by which performance against the standards will be audited and monitored, with actions taken to implement any recommendations that are agreed in response to the findings.

The use of HPN has evolved into a successful and life-saving treatment for the management of intestinal failure. Under the care of experienced staff it has been shown that catheter-related complications can be kept to a minimum. It is important, however, that care is not only focused on the prevention of complications and improved survival, but includes assessing physical function and providing support for psychosocial and emotional problems that may affect quality of life (Jeppeson et al, 1999).

A set of standards was developed for the HPN network with the aim of ensuring that patients and carers receive a holistic approach to care which involves all members of the multiprofessional team. The nurse specialists developed the standards in collaboration with network members. The input of a representative from the patient group Patients on Intravenous and Nasogastric Nutrition Therapy (PINNT) was invaluable.

The format of the standards were governed by the generic standards of the CSBS (2001). This included the use of standard statements, rationale and criteria. The content of the standards was adapted from Home Parenteral Nutrition Standards (Wood, 1996). The standards have been submitted to the CSBS and are awaiting final approval. Box 1 lists the network draft standard statements.

Criteria for the standards
HPN services

A named lead clinician will have responsibility for coordinating the multiprofessional team. Successful patient management requires the skills of a multiprofessional group, with a minimum membership of a consultant clinician, a named nurse, a dietitian and a pharmacist. Other professionals in the team may include a clinical biochemist, social care worker or clinical psychologist.

Staff development

Education and support of staff is vital to the continuing success of the network. The network will encourage less experienced staff to gain experience in larger specialist centres. The regular meetings of network members will facilitate the sharing of knowledge and experience. Each profession has been encouraged to meet independently of the network to discuss current best practice and to provide support and guidance for less experienced staff.

HPN assessment

Patients starting HPN may experience anxiety, fear, anger and depression. It is imperative that they are involved in decisions about their future care and are given the opportunity to discuss any fears and concerns (Wheatley, 2001).

Patient training programme

The training programme can be complex and has to be tailored to the individual needs of the patient. To assist with continuity, it is recommended that one member of the team is responsible for the coordination of the training programme and for determining the competence of the patient and/or carer.

Discharge planning

Discharge planning is started on admission and involves all members of the multidisciplinary team. Before discharge the named nurse will arrange discussions and meetings with home care companies, pharmacy departments, social care officers, district nurses and GPs.

Discharge and follow-up

Support in the very early stages of discharge is essential. Patients must have access to a 24-hour contact number and feel secure in the knowledge that they can telephone for advice, even with minor worries. Regular review at the outpatient department will be arranged. This should include input from at least the clinician, the named nurse and the dietitian.

Audit of the network
The implementation of standards throughout the network will be monitored. Data collected between 1999 and 2000 on 40 patients from four centres will be used as a baseline for future results (McKie, 2001). It includes episodes of catheter-related complications, catheter insertion and removal, metabolic complications and hospital admission rates.

The development of standardised protocols and procedures, sharing audit results and exchange of experience should lead to changes in practice and improvements in outcomes. The network has identified 75 patients in 20 hospitals throughout the country. The smaller centres have been provided with evidence-based protocols and procedures, have been invited to network meetings and are encouraged to participate in audit.

A network database is currently being written, and future results of the audit will be shared with the network members. The nursing members of the group are developing a self-directed learning package. A network website is currently being developed.

- For further information on the Scottish Home Parenteral Nutrition Managed Clinical Network contact Janet Baxter, tel: 01382 496558, e-mail:
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