Steien, Dana B.

Abstract Home parenteral nutrition (HPN) is a life‐sustaining therapy traditionally used as a bridge to enteral autonomy or intestinal transplantation. Increasingly, it is used for intractable feeding intolerance (IFI), which can occur near the end of life (EOL) in children with severe neurological impairment (SNI). In these cases, HPN use differs from its historical role and requires tailored outpatient planning. We report a retrospective case series of four children with SNI who developed IFI and received HPN as part of their EOL care. The pediatric palliative care team (PPCT) was involved in all cases during HPN decision‐making and planning. The pediatric nutrition support team (PNST) and PPCT collaborated to provide individualized, goal‐directed care. Patients ranged from 1 to 12 years old, with HPN durations between 5 weeks and 2 years. All were enrolled in hospice while receiving HPN. Plans were made through shared decision‐making, reflecting each family's values, and included tailored approaches to laboratory monitoring, febrile episodes, line care, growth assessment, and follow‐up. HPN at EOL requires careful ethical consideration, particularly of autonomy because families often find comfort in providing nutrition. IFI is often unanticipated, and prognoses are uncertain. With the combined expertise of PNST and PPCT, HPN can be used meaningfully at EOL, supporting family values, easing suffering, and creating space for peace and connection.

Objectives:Nutrition support is essential in improving outcome and survival in children on extra corporal membranous support (ECMO). We aim to evaluate the association between the timing of enteral nutrition (EN) initiation and its impact on outcome.Methods:We retrospectively reviewed the electronic health records of children (≤18 years) from November 2014 to November 2019 who were on veno‐arterial ECMO for ≥48 hours. Abstracted data included demographics, ECMO indication and duration, timing of EN initiation, change in weight‐for‐age z score (WAZ), and survival rate. The vasoactive‐inotropic score (VIS) was calculated to assess illness acuity.Results:We identified 76 children with median age (interquartile range [IQR]) of 0.3 years (0–2.6), 46 of which were infants (59%) who required ECMO for a median (IQR) of 10 days (6–22). Thirty‐six (47%) survived to hospital discharge. EN was initiated in 55 (72%) of patients while on ECMO. EN initiation by day 3 of ECMO was positively associated with survival (P = 0.0438). VIS at the time of EN initiation was lower in surviving infants (P = 0.022). Children who achieved enteral autonomy were more likely to survive (P = 0.0024). Survivors had greater WAZs at ECMO completion (P = 0.0004).Conclusions:Initiation of EN by day 3 of ECMO and at a lower VIS is associated with greater likelihood of survival.

Abstract Background Home enteral nutrition (HEN) use continues to increase in children unable to meet nutritional needs through oral intake. Some patients do not tolerate standard polymeric formula (SPF), which may lead to malnutrition. Use of peptide‐based diet (PBD) has demonstrated benefits in adults, however there remains a paucity of data in pediatric population. Methods Retrospective review of medical records of children receiving HEN between October 2015 and October 2019 was conducted. Nutrition, tolerance, and healthcare utilization was tracked through May 2020. Children receiving PBD as initial formula or transitioned to PBD from SPF were included. Our objective was to assess gastrointestinal tolerance and impact on healthcare utilization in children receiving PBD. Results During study period, 30 children (mean age, 9 ± 5.44 years; 20 of 30 [66.7%] male) utilized PBDs. Twenty‐one patients started PBD directly with malnutrition as primary indication. Nine patients transitioned from SPF to PBD, most often due to intolerance of SPF (66%). After transition to PBD, no symptoms were reported in 6 of 9 (66.7%) patients, and symptoms of SPF intolerance resolved in 4 of 9 (44.5%) patients. Healthcare utilization declined significantly after transition to PBD, including mean numbers of emergency room visits (0.78 ± 1.09 to 0.11 ± 0.33; P = .025), provider visits (1.67 ± 1.32 to 0.56 ± 0.73; P = .007), and phone calls (1.22 ± 1.39 to 0.33 ± 0.50; P = .026). Conclusions PBD is well tolerated and can result in significant reduction in healthcare utilization in children intolerant to SPF.