Changes in adult home parenteral nutrition practice over 25 years

Abstract

Background and aims: Home Parenteral Nutrition (HPN) is the established treatment of intestinal failure. This study considers the changes in practice in a single UK centre over the past twenty-five years.

Methods: Data was culled from a database used for clinical care and maintained prospectively.

Results: Two hundred and five patients were included from 1993 to 2018. Patient numbers increased from 22 during 1999-2003 to 158 during 2014-2018. The median age at discharge increased from 52 years during 1999-2003 to 59 years during 2014-2018. Thirty percent of patients discharged during 1999-2003 had Crohn's disease, reducing to 14% during 2014-2018. Fifteen percent of patients discharged during 1999-2003 had small bowel fistula or obstruction in comparison to 44% during 2014-2018. Only 18 patients were treated with palliative intent, the majority in recent years. An increasing number of patients required help with HPN care over the years. Survival in non-palliative patients was 85% at 1 year, 67% at 3 years, 53% at 5 years and 42% at 10 years. The majority of deaths were due to underlying disease and only 5 of 55 deaths were attributed to HPN alone. HPN dependence in non-palliative patients was 73% at 1 year, 59% at 3 years, 56% at 5 years and 43% at 10 years. Fifty eight patients stopped HPN after reconstructive surgery. Patients experienced 5.1 admissions/1000 HPN days (64.7 admission days/1000 HPN days). Admission rate did not change over the years though the percentage due to catheter problems fell from 52% to 40% while the percentage due to underlying disease or unrelated cause rose.

Conclusions: The increase in numbers, age and dependency of HPN patients requires increasing resource and consideration of new models of service. Many patients with short bowel syndrome now survive to old age and the care needs of the HPN patient who has become elderly can be complex. A significant proportion of patients are being referred for HPN as a bridge to reconstructive surgery after surgical complication and this requires close involvement of gastrointestinal surgeons in HPN teams. The need for hospital admissions remains a burden for HPN patients and there is scope for changes in service provision to try to reduce hospital days.

Keywords: Home parenteral nutrition; Intestinal failure.