Home Parenteral Nutrition in Children with Severe Neurological Impairment

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D D’Arienzo et al. JPGN 2024; 79:1031–1039. Open Access! Characteristics and outcomes of home parenteral nutrition among children with severe neurological impairment

Background:  “A subset of patients with SNI may not tolerate enteral feeding due to gastrointestinal (GI) issues, resulting in pain, feeding intolerance, and malnutrition, despite the absence of primary digestive disorders.3–5 In these cases, home parenteral nutrition (HPN) can be considered…The decision to initiate HPN in children with SNI is challenging. The lack of evidence, absence of definitive etiologies for GI symptoms, known complications, and psychosocial burden of HPN create ethical hurdles for clinicians when partnering with caregivers in this decision.12, 18, 20“

Methods: This was a retrospective review from Canada’s largest tertiary care pediatric hospital of all children with severe neurologic impairment (SNI, n=18) and primary digestive disorders (n=187), where home parenteral nutrition (HPN) was initiated between January 2010 and September 2023.

Key findings:

  • Compared with the primary digestive disorders group, children with SNI with non-primary digestive disorders were less likely to achieve enteral autonomy (p < 0.0001).
  • There was a higher mortality rate were observed in the SNI cohort, though this did not reach statistical significance (22% in SNI group vs. 8% those primary digestive disorders; p = 0.09). Only one death in the SNI group was attributed to HPN-related complications.
  • “CRBSI rate of 1.7 per 1000 catheter days among the SNI and non-primary digestive disorder population on HPN indicates no increased risk in this population. Similarly, our observed rate for catheter-related mechanical problems (occlusion, leakage, dislodgement) of 4.3 per 1000 catheter days is similar to the report of 3.4 per 1000 catheter-days in children with intestinal failure on HPN.28 “

In the discussion, the authors note that “HPN initiation was found to not influence utilization acute care hospital resources, with no difference in ED visits, hospitalizations, ICU admissions or days in hospital in the year before initiating HPN, compared to the following year…the high usage of acute care that is characteristic of this population persisted, suggesting that HPN also did not meaningfully decrease health care use for these children.”

My take: HPN may improve symptoms and nutrition in some children with SNI. This comes with a substantial burden. Prior to starting PN, careful exploration of long-term goals is essential. The decision to use of PN is fraught with ethical issues in children with SNI and could be considered a ‘heroic’ measure; some families will opt for palliative care.

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Fields in the Month of June by Charles-Francois Daubigny at National Gallery of Art (Washington, D.C.)