Intestinal failure: the evolving demographic and patient outcomes on home parenteral nutrition

Abstract

The outcome of long-term parenteral nutrition (PN) has improved. The increasing number of patients with NMD, coupled with their higher burden of care, results in an increasing health care burden, and the planning of intestinal rehabilitation services needs to reflect this.

Pediatric Home Parenteral Nutrition: Indications and Short‐Term Outcomes in a Large National Sample of Commercially Insured Children and Adolescents

“…Quality‐improvement initiatives for treatment of diagnoses that commonly result in SBS, such as necrotizing enterocolitis, may also have contributed to the difference. Consistent with our results, a sharp decline in the rate of SBS and increases in the medical complexity of HPN‐treated pediatric patients were identified in a recently published analysis of a single hospital system in the United Kingdom from 2000 to 2016 …”

“…Consistent with our results, a sharp decline in the rate of SBS and increases in the medical complexity of HPN-treated pediatric patients were identified in a recently published analysis of a single hospital system in the United Kingdom from 2000 to 2016. 17 Third, like Sustain Registry researchers, 10 we did not attempt to carry out any hierarchical classification of diagnoses, so the prevalence rates reported in this study were not mutually exclusive; some patients with codes of symptoms (eg, digestive symptoms) also had more specific diagnostic codes.…”

“…Moreover, patients in this study were, on average, much older than those enrolled in Sustain (8.5 vs 4.9 years, respectively), despite reasonably similar age ranges (Sustain = 3 months to 16 years). These differences could be attributable to the insurance coverage difference between the samples, to shifts in insurance coverage mix and provider availability after implementation of the Affordable Care Act exchange plans in January 2014, to the predominance of hospitals (68%) instead of home infusion centers (32%) in Sustain, to variation in diagnosis recording and reporting practices among Sustain participating facilities, or to changes that may have occurred over time in the demographic and diagnostic profiles of pediatric patients treated with HPN . Quality‐improvement initiatives for treatment of diagnoses that commonly result in SBS, such as necrotizing enterocolitis, may also have contributed to the difference.…”

“…These differences could be attributable to the insurance coverage difference between the samples, to shifts in insurance coverage mix and provider availability after implementation of the Affordable Care Act exchange plans in January 2014, 15,16 to the predominance of hospitals (68%) instead of home infusion centers (32%) in Sustain, 10 to variation in diagnosis recording and reporting practices among Sustain participating facilities, 10 or to changes that may have occurred over time in the demographic and diagnostic profiles of pediatric patients treated with HPN. 17 Quality-improvement initiatives for treatment of diagnoses that commonly result in SBS, such as necrotizing enterocolitis, 18,19 may also have contributed to the difference. Consistent with our results, a sharp decline in the rate of SBS and increases in the medical complexity of HPN-treated pediatric patients were identified in a recently published analysis of a single hospital system in the United Kingdom from 2000 to 2016.…”

Paediatric intestinal failure and transplantation

“…1,2 Advances in neonatal critical care and the surgical management of children with complex conditions have been associated with a significant increase in children with IF requiring home PN. [3][4][5] In the UK, the rate of home PN in children has increased from 1.54 per million children in 2000 to 21.5 per million children in 2016. 5 Although the number of patients is relatively small, IF places a significant burden on affected children, their family and the health-care system.…”