Parenteral nutrition is widely available for the management of intestinal failure in children. In those with protracted intestinal failure, prolonged administration is now feasible. In these circumstances, it is desirable that this administration occurs in the home. Home administration of parenteral nutrition is associated with a better quality of life for the patient, with a reduced rate of infection of the administration line, and is cheaper for the health services. It can be undertaken where adequate facilities for its support are available in the community. The development of support services for medical management in the community is high on the list of priorities for health services at the present time.
In order to help quantify the need for support services for home administration of parenteral nutrition, we conducted a survey of children receiving parenteral nutrition for a prolonged period in the United Kingdom and Republic of Ireland. For the purposes of the study, prolonged was defined as a period of greater than six weeks, as it is unlikely that parenteral nutrition would be considered earlier than this. Paediatricians notifying a case fitting the definition criteria were sent a follow-up questionnaire. Factors relating to suitability for home administration of parenteral nutrition were expectation of stopping parenteral nutrition shortly, associated medical problems, poor housing or lack of facilities, family medical or social problems, family literacy or numeracy problems, and parenteral confidence or competence.
A response rate of 90.7% to the initial survey was obtained. Fifty-nine cases were notified, of whom 45 were confirmed. Twenty-one additional cases were notified through other channels, two by a paediatric surgeon who contacted the authors independently, two by a paediatrician who contacted the authors independently, and 17 by the nutritional care teams of two large children’s hospitals. Therefore, the total number of identified and confirmed cases was 66. Thirty four patients were on home parenteral nutrition, nine were expected to be off parenteral nutrition shortly, eight were not suitable for home parenteral nutrition, twelve were in hospital and suitable for home parenteral nutrition, and the status of the remainder was not specified. Eighteen patients had a short gut, twelve an enteropathy, twelve a neuronal or mypathic disorder and the remainder a range of other conditions including prematurity, chronic renal failure and neurological abnormalities.
Of the nine patients expected to be off parenteral nutrition shortly, eight patients were among the total nineteen patients aged under one year and seven were among the 23 patients on parenteral nutrition for less than six months. Of the eight not suitable for home parenteral nutrition, six had another associated medical problem (two prematurity, two congenital abnormality, one neurological disease, one chronic renal failure); one had a social problem and one a numeracy problem and associated with renal failure.
In summary, 12 of 32 children on parenteral nutrition for greater than six weeks in hospital were suitable for consideration for home treatment. Conversely, 12 of 46 suitable for home parenteral nutrition were in hospital.
While is encouraging that the majority of children on prolonged parenteral nutrition who were suitable for home treatment were at home, awareness of the availability of this treatment should be more universal.
Professor D Candy, Professor E Ross, Dr S Devane, Departments of Child Health and Community Paediatrics, King’s College School of Medicine and Dentistry, London SE5 8RX Tel: 020 7272 6222