G-tube Feeding Research Articles

Factors guiding gastrostomy tube decision-making for caregivers of children with cystic fibrosis: a scoping review protocol

IntroductionWhile ensuring appropriate growth is essential for all children, optimising nutritional status in children with cystic fibrosis (CF) is critical for improving health outcomes. Nutritional challenges in CF are multifactorial...

Atypical clinical presentation and management of urinary stone disease in non-verbal non-ambulatory children

Management of kidney stones primarily depends on various factors such as the presence of urinary tract obstruction, pain, stone size, location, impact on renal function, and the existence of infection. Renal colic is the classic presentation of an obstructive kidney stone. However, in this study, we present a cohort of non-verbal non-ambulatory (NVNA) patients who exhibit a distinct and uncommon presentation of kidney stones due to their medical conditions. Information about kidney stone disease in this gropup of complex pediatric patients is, scarce and their associated risk factors are not well understood. Therefore, we aim to summarize the clinical presentation, and management challenges in this unique group of NVNA patients to identify potential variables for prospective studies. A retrospective chart review was completed for all NVNA patients seen at the pediatric multidisciplinary kidney stone clinic between July 2020 to August 2022. Demographic variables, clinical presentation data, metabolic evaluation, radiological imaging, and surgical management was included for analysis. A total of 224 pediatric patients were referred to the multidisciplinary stone clinic. Of those, 27 were identified to be NVNA. The most common primary diagnosis was Cerebral Palsy followed by Lennox-Gastaut syndrome. Average age at first kidney stone presentation was 11.5 years±5.7 years. An obstructing stone was diagnosed in 18 (66%) patients, 4 (22.2%) of these presented with sepsis. Average stone burden was 9.2mm (±5.8mm). Of the obstructing stones, 13 (72%) were in the kidney. All patients with an obstructing stone underwent surgical management with retrograde endoscopic approach. Metabolic 24-h-urine analysis was completed in 24 (89%) patients. 17 (62%) had an elevated urine density, 15 (55%) demonstrated calcium oxalate supersaturation, 12 (44%) met criteria for acidosis, and 7 (26%) had significant hypocitraturia. NVNA patients represent a unique cohort whose clinical presentation is atypical. Limited ability to express symptoms makes early detection difficult to recognize. Twenty two percent of patients present with sepsis as their first manifestation of an acutely obstructing kidney stone. Pain is subjectively interpreted by caregivers and is an uncommon symptom. Our cohort demonstrates common risk factors for stones including propensity for chronic dehydration, slow urinary tract transit, ineffective bladder emptying, G-tube feeding, and lithogenic medications. NVNA pediatric patients have atypical kidney stone clinical presentation. Awareness of this unique group of patients should support future collaborative studies to focus on understanding these atypical presentations and reflect on improving management.

Gastrostomy Tube Feeding in Indian Children with Advanced Chronic Kidney Disease.

Guidelines recommend initiating supplemental enteral feeding through a nasogastric (NG) or gastrostomy tube (G-tube) in patients with chronic kidney disease who have inadequate oral intake despite repeated nutritional counseling. While G-tube placement is shown to improve both nutritional status and anthropometric indices of children with CKD in developed regions, information from developing countries is lacking. This retrospective report reviewed the impact of G-tube feeding on nutritional intakes and anthropometric parameters over a 1-y follow-up in 5 children with CKD-5D managed at one tertiary care center in India. Gastrostomy feeding facilitated significant increments in caloric and protein intake and was easy and safe. However, G-tube feeding led to additional expenses, and the changes in growth parameters were variable in the short term. A longer follow-up appears necessary to understand its impact on wasting, growth velocity, and stature.

The role of gastrostomy feeding during intestinal rehabilitation for children with short bowel syndrome.

Following extensive bowel resection, many children with short bowel syndrome (SBS) are routinely offered a placement of gastrostomy tube (G-tube) for feeding. This nutritional pathway is aimed to accommodate the gastric and small bowel motor disturbances related to SBS, and to promote weaning off parenteral nutrition (PN) to achieve enteral autonomy (EA). The aim of this study was to investigate the effect of gastrostomy feeding in outcomes of children with SBS. A retrospective cohort of all SBS children managed at our multidisciplinary Intestinal Rehabilitation Center as part of an Intestinal Rehabilitation Program. SBS was defined as PN dependence for more than six weeks following extensive bowel resection. Patients treated with G-tube feeding were compared with patients without G-tube in terms of PN duration, reaching EA, physical development, and surgical parameters. A total of 36 SBS patients diagnosed between 2003 and 2022 were included. The most common etiologies included congenital intestinal atresia (31%) and necrotizing enterocolitis (25%). SBS-G-tube (group A) contained 20 children, and SBS (group B) contained 16 children. A total of 21 children reached EA (58%); ten from group A (50%), and 11 from group B (69%) (p > 0.05). Within EA patients, mean PN duration was 49 ± 44months in group A, and 24 ± 33months in group B (p > 0.05). Patients who reached EA had 22% longer residual small bowel when compared with PN-dependent patients (p = 0.003). However, the outcomes were adjusted for residual small and large bowel length and percentages, a residual ileocecal valve, and a colon in continuity with no differences between the groups. Two-thirds of children from group A reported G-tube related complications (mechanical, bleeding, or infections). We did not find differences in mean height and weight percentiles between the groups (p > 0.05). We did not find significant advantage of gastrostomy feeding in reaching EA. Because there are surgical and mechanical complications related to this procedure, further prospective studies are required to determine G-tube relevance for children with SBS.

0518 Clinical Correlates, Diagnosis, and Management of Sleep-disordered Breathing in Young Children with Down Syndrome

Abstract Introduction Individuals with Down syndrome (DS) have high rates of sleep-disordered breathing and demonstrate more severe manifestations of obstructive sleep apnea (OSA) compared with non-syndromic patients. The consequences of untreated OSA in childhood include pulmonary hypertension, cognitive dysfunction, and abnormal growth. The American Academy of Pediatrics recommends that children with DS have a sleep study by age four years. It is unclear if these guidelines are sufficient to address the burden of disease in very young patients. There is also a paucity of data regarding clinical characteristics associated with OSA and outcomes following medical or surgical intervention in this population. Methods A retrospective cohort study was performed at Cincinnati Children’s Hospital Medical Center for all children with DS born between 2013-2019. Electronic medical record data were extracted including demographics, use of PSG, incidence of OSA, age at diagnosis, OSA severity, and interventions utilized. Statistical analysis used Fishers exact tests and analysis of variance with a significance threshold of p < 0.05. Results A total of 397 patients met inclusion criteria and 235 (59%) had a sleep study. Most patients (n = 221, 94%) had an abnormal PSG and 60% had moderate or severe disease. There was an inverse relationship between age at first sleep study and OSA severity (p <0.0001). Most patients (82%) had a sleep study due to the presence of symptoms; among asymptomatic patients, 91% met polysomnographic criteria for OSA. OSA severity was associated with increased rates of failure to thrive (p < 0.01), aspiration (p = 0.005), G-tube feeding (p = 0.025), and pulmonary hypertension (p = 0.005). Most patients (n=178, 79%) required multiple interventions to manage their OSA. Conclusion In this cohort of infants and young children with DS who underwent PSG, a majority had moderate to severe OSA. The pervasiveness of severe disease in young infants suggests that current surveillance guidelines are inadequate. Infants should be evaluated with PSG in the first month of life regardless of clinical symptoms. Further study is needed to prospectively evaluate the impact of early diagnosis and intervention on long term outcomes. Support (If Any)

A Study of Postoperative Complications Occurring at Home With Pediatric Gastrostomy Feeding Tubes.

Gastrostomy tubes (G-tubes) provide long-term feeding assistance to children with severe feeding dysfunction. Although there are a host of complications that occur at home with current pediatric G-tube feeding, their prevalences and outcomes remain relatively unstudied. This study aims to identify and describe such complications. A dual-round survey was administered to 98 participants through the Feeding Tube Awareness Foundation, a 501(c)(3) organization that supports parents and caretakers of G-tube-fed children. Information was collected broadly regarding G-tube complications, causes, and attitudes toward such complications. Infection (56%), itching/irritation/redness (52%), and leakage (51%) were the leading G-tube related complications. The average time that G-tubes were replaced was 3.4 ± 1.2 months as compared to the typical recommended period of up to 6 months. Of the caretakers who had not experienced G-tube displacement, 7.9% wanted to see a change in current G-tubes to address the issue, compared with 75% of those who had experienced displacement. This 67.1% differential in caretakers' attitudes toward G-tubes based on their prior experience with a particular complication was the largest gap among all other listed complications. G-tube complications are prevalent and varied. A sizable portion of G-tube users experience complications severe enough to require intervention. Of these, G-tube displacement is particularly critical and frequently precedes other prevalent complications, namely gastric leakage, infection, and tissue granulation.

Children with Congenital Central Hypoventilation Syndrome Do Not Wake up to Ventilator Alarms.

Congenital Central Hypoventilation Syndrome (CCHS) requires lifelong ventilatory support during sleep. Subjects withCCHS are vulnerable to sleep disturbances associated with treatments, monitoring alarms, and care they receive. We hypothesized that sleep would be disrupted in patients withCCHS due to ventilatory support and other treatments at night. An anonymous survey of patients with CCHS, age up to 17years was conducted through REDCAP. Subjects were recruited in person, by flyer, email, and social media. Data collected included demographics, PHOX2B genotype, ventilatory support, treatments, nursing, and sleep parameters. We received 23 responses (35% female, 8.1years ± 5.6). PHOX2B genotypes were 20/24 PARM (2), 20/25 PARM (4), 20/26 PARM (2), 20/27 PARM (9), ≥ 20/28 PARM (2), and NPARM (2). Two subjects did not indicate the PHOX2B genotype. 13/23 were ventilated by PPV via tracheostomy, 7 by NIPPV, 2 by diaphragm pacing, and1 did not indicate. Additional treatments received at night included suctioning (9), aerosol (1), G-tube feeding (2), and none (11). Only 9 received nursing at night. 13 used pulse oximetry for monitoring, and 9 used both pulse oximetry and end tidal CO2 monitor. 17/23 rarely woke up due to ventilator or monitor alarms. 11/23 usually or sometimes woke up at least once a night; only 2/11 woke up due to alarms. 5/17 who rarely woke up to the alarms had night nursing. Most subjects withCCHS did not awaken to ventilator or monitoring alarms and a majority of these patients did not have nighttime nursing. (Mathur et al. in Sleep 43(Supplement_1):A333, 2020).

Clinical utility of low branched-chain amino acid modular diets in patients with isovaleric aciduria and maple syrup urine disease

Introduction: Modular diets (MDs) with low amount of offending amino acids have been developed using locally available food ingredients as alternatives to commercial formulas for the treatment of branched-chain organic acidurias (BCOAs). Herein, we conducted a clinical investigation of MDs in patients with BCOAs. Methods: Modular diet A (MDA), with low leucine was produced for maple syrup urine disease (MSUD), and modular diet B (MDB) products, MDB-1, -2, -3, and -4, with low leucine, valine, methionine and threonine were made for isovaleric aciduria (IVA)/methylmalonic aciduria (MMA)/propionic aciduria (PA). Children aged 4-18 years, with MSUD, IVA, PA or MMA were invited to participate in the study. The research subjects switched from metabolic formula protocol to modular diet protocol. They were followed-up at 0, 1, 2, 4, and 6 months. Clinical efficacies of MDs were determined by completion of study, compliance to MDs, clinical outcomes and complications, and parental satisfaction. Results: Six children (2 MSUD and 4 IVA) participated and completed the study. Compliance to MDA was 100% in MSUD subjects with G-tube feeding, while compliance to MDB varied among self-fed individuals with IVA. One subject with MSUD was clinically stable throughout the study, while the other experienced metabolic instability. All IVA individuals showed clinical and laboratory stability during the study. One MSUD and three IVA families preferred the metabolic formula, whereas the other IVA family reported no preference and the other MSUD subject preferred MDs. Conclusion: We provided a proof of concept in developing modular diets for BCOAs, and showed favourable outcomes when using MDs in IVA and varying clinical benefits in MSUD.

Isolated Growth Hormone Deficiency as a Cause of Hypoglycemia Past Infancy

Introduction: Hypoglycemia is a common manifestation of Growth Hormone (GH) deficiency in infancy, but is rarely seen beyond 1 year of age. Here, we describe the case of a 5 year 6- month- old child with recurrent episodes of hypoglycemia due to GH deficiency in the setting of malnutrition. Experimental Methods / Case Presentation: Case report and literature review Results: A 5y6m girl with history of atypical teratoid rhabdoid tumor, status-post surgical resection and adjuvant therapy with CNS irradiation (50.4 gray), presented with recurrent hypoglycemia despite continuous G-tube feedings. Child had undergone surgery and irradiation approximately 3 years prior to presentation. She was initially followed at the cancer survivor clinic but had been lost to follow up for 2 years. At presentation, whole blood glucose was 51mg/dL. Height was 93.5cm (-4 SDS) and BMI 10.6 kg/m2 (- 7.75 SDS); she appeared malnourished on exam with minimal subcutaneous fat. She was admitted to the hospital where blood glucoses ranged from 59-68 mg/dL, despite continuous enteral feeds. On evaluation, blood ketones were mildly elevated at 0.67 mmol/L (ref range < 0.3mmol/L), growth factors were low: IGF1 15 ng/mL (ref range 37 - 272 ng/mL); IGF-BP3 1.1 mg/L (ref range 1.1 - 5.2 mg/L), and other pituitary hormones were within normal range [stimulation test cortisol peak 31.9 mcg/dL, TSH 2.4 mIU/mL(Ref range: 0.700 - 4.100 uIU/ML), Free T4 1.2 ng/dL (Ref range 1.0-2.4 ng/dL)]. Hypoglycemia resolved within 48 hours of initiating empiric treatment with GH (0.2mg/kg/week) and patient’s feeds were successfully compressed to 16 hours. Child was discharged home after passing an overnight 8-hour safety fast. Conclusion: Growth hormone deficiency can present as recurrent hypoglycemia outside the infantile period in the setting of malnutrition and needs to be considered in the differential diagnosis and evaluation of childhood hypoglycemia. ​

Foregut Exclusion Enhances Incretin and Insulin Secretion After Roux-en-Y Gastric Bypass in Adults With Type 2 Diabetes.

Patients with type 2 diabetes experience resolution of hyperglycemia within days after Roux-en-Y gastric bypass (RYGB) surgery. This is attributed, in part, to enhanced secretion of hindgut factors following exclusion of the gastric remnant and proximal intestine during surgery. However, evidence of the mechanisms of remission remain limited due to the challenges of metabolic evaluation during the early postoperative period. The purpose of this investigation was to determine the role of foregut exclusion in the resolution of type 2 diabetes after RYGB. Patients with type 2 diabetes (n = 15) undergoing RYGB had a gastrostomy tube (G-tube) placed in their gastric remnant at time of surgery. Patients were randomized to receive a mixed meal tolerance test via oral or G-tube feeding immediately prior to and 2 weeks after surgery in a repeated measures crossover design. Plasma glucose, insulin, C-peptide, incretin responses, and indices of meal-stimulated insulin secretion and sensitivity were determined. Body weight, fat mass, fasting glucose and insulin, and circulating lipids were significantly decreased 2 weeks after surgery. The glycemic response to feeding was reduced as a function of total area under the curve but not after adjustment for the reduction in fasting glucose. Oral feeding significantly enhanced insulin and incretin secretion after RYGB, which was entirely ablated by G-tube feeding. Foregut exclusion accounts for the rise in incretin and insulin secretion but may not fully explain the early improvements in glucose metabolism after RYGB surgery.

Actual and Potential Impact of a Home Nasogastric Tube Feeding Program for Infants Whose Neonatal Intensive Care Unit Discharge Is Affected by Delayed Oral Feedings

To compare healthcare use and parent health-related quality of life (HRQL) in 3 groups of infants whose neonatal intensive care unit (NICU) discharge was delayed by oral feedings. This was a prospective, single-center cohort of infants in the NICU from September 2018 to March 2020. After enrollment, weekly chart review determined eligibility for home nasogastric (NG) feeds based on predetermined criteria. Actual discharge feeding decisions were at clinical discretion. At 3months' postdischarge, we compared acute healthcare use and parental HRQL, measured by the PedsQL Family Impact Module, among infants who were NG eligible but discharged with all oral feeds, discharged with NG feeds, and discharged with gastrostomy (G) tubes. We calculated NICU days saved by home NG discharges. Among 180 infants, 80 were orally fed, 35 used NG, and 65 used G tubes. Compared with infants who had NG-tube feedings, infants who had G-tube feedings had more gastrointestinal or tube-related readmissions and emergency encounters (unadjusted OR 3.97, 95% CI 1.3-12.7, P=.02), and orally-fed infants showed no difference in use (unadjusted OR 0.41, 95% CI 0.1-1.7, P=.225). Multivariable adjustment did not change these comparisons. Parent HRQL at 3months did not differ between groups. Infants discharged home with NG tubes saved 1574 NICU days. NICU discharge with NG feeds is associated with reduced NICU stay without increased postdischarge healthcare use or decreased parent HRQL, whereas G-tube feeding was associated with increased postdischarge healthcare use.

Percutaneous Enteral Feeding in Patients With 22q11.2 Deletion Syndrome

To describe the incidence of percutaneous enteral feeding in patients with 22q11.2 deletion syndrome (22q11.2 DS) and determine factors associated with the need for percutaneous enteral feeding tube placement. Retrospective chart review. The records of a 22q11.2 DS clinic and pediatric otolaryngology clinic at a tertiary pediatric hospital were reviewed from January 1, 2009, to December 31, 2019. All patients with confirmed 22q11.2 deletion were identified. Cardiac, otolaryngological, and feeding characteristics were recorded along with surgical history. A patient was defined to have a G-tube if the history was significant for any percutaneous gastric feeding tube placement, including a gastrostomy tube, gastrostomyjejunostomy tube, or a Mickey button. One hundred ninety patients with confirmed 22q11.2 DS by genetic testing were included. Thirty-three percent (n = 63) required G-tube placement. G-tube placement was associated with cardiac diagnosis (P < .01), history of cardiac surgery (P < .01), aspiration (P < .01), nasopharyngeal reflux (P < .01), subglottic stenosis (P < .01), laryngeal web (P = .003), and tracheostomy (P < .01). This suggests these conditions are associated with higher rates of G-tube placement in the 22q11.2 DS population. Patients with 22q11.2 DS often require supplemental nutritional support in the form of G-tube feeding, most often in the first year of life. Congenital heart abnormalities and surgery along with tracheostomy, subglottic stenosis, laryngeal web, aspiration, and nasopharyngeal reflux are significantly associated with the need for G-tube placement. Understanding associations between comorbid conditions and G-tube placement, especially those involving the head and neck, may assist with counseling of patients with 22q11.2 DS.

Mechanisms Underlying Glycemic Reduction Following Roux-en-Y Gastric Bypass Surgery: Foregut Versus Hindgut Contributions

Background: Roux-en-Y gastric bypass (RYBG) cures type 2 diabetes in over 80% of cases, although the mechanisms remain incompletely understood. A primary role for exaggerated secretion of glucagon-like peptide-1 (GLP-1) from the hindgut has been established, however the question remains whether omission of an as-yet uncharacterized diabetogenic foregut factor may also contribute. The “foregut hypothesis” derives from a study by Rubino et al. in which glycemic responses to hindgut feeding in duodenal-jejunal bypassed rats (analogous to RYGB anatomy), foregut feeding in gastrojejunal anastomosed rats, and foregut+hindgut feeding in sham-operated pair-fed controls showed that foregut stimulation independently raised blood glucose while bypassing the foregut lowered glucose. We performed a human study analogous to the Rubino study to further evaluate this hypothesis. Methods: Four post-RYGB patients with indwelling gastrostomy-tubes (g-tubes) were fed a standardized 75 g liquid meal on three separate days under differing fasting feeding conditions: 1) isolated oral feeding to the hindgut, 2) isolated g-tube feeding to the foregut, and 3) concomitant oral+g-tube feeding (co-stimulation of foregut and hindgut). Results: Compared to g-tube feeding, oral feeing led to significantly higher glucose (217 vs. 150 mg/dL, p=0.042) and insulin peaks (304 vs. 120 μIU/mL, p=0.021) and lower glucose nadirs (43 vs. 72 mg/dL, p=0.019), while compared to isolated oral or g-tube feeding, concomitant oral+g-tube feeding led to higher glucose (255 mg/dL) and insulin peaks (452 μIU/mL), and higher glucose nadirs (78 mg/dL). Conclusion: Hindgut stimulation and foregut omission may independently contribute to glucose lowering after RYGB.

Surgical Gastrostomy in Pediatric Patients Undergoing Cardiac Surgery

BackgroundPractices of performing gastrostomy tubes vary across institutions for patients undergoing cardiac surgery. We aim to elucidate the outcomes of gastrostomy and the duration of feeding assistance in these patients. Materials and methodsPatients undergoing cardiac surgery (CS) at our institution from 2013 to 2017 were retrospectively reviewed using the Society of Thoracic Surgery database. A cohort of non-CS patients undergoing gastrostomy tube (g-tube) placement from 2013 to 2015 was used as control. Technical complications and postoperative feeding intolerance were analyzed. Duration of need for g-tube was also analyzed in patients undergoing CS. ResultsThe CS group had 144 patients, and the non-CS group had 677 patients. CS patients had a higher incidence of feeding intolerance (18.8% versus 5.6%, P < 0.001) and took longer to attain full feeds (median of 2 versus 1 d, P < 0.001), and this was confirmed on propensity matched analysis. In addition, technical g-tube complications were similar in the two groups. No mortality in CS was attributed to the g-tube. 58% of patients undergoing CS were able to wean from g-tube feeding by 6-12 mo after g-tube placement. ConclusionsG-tube placement in patients undergoing CS by any technique is safe without increased complications. A significant portion of these patients was able to wean off supplemental enteral feeding assistance by a year after g-tube placement.

0874 Patients with Congenital Central Hypoventilation Syndrome Do Not Wake Up to Ventilator Alarms

Abstract Introduction Congenital Central Hypoventilation Syndrome (CCHS) requires lifelong ventilatory support during sleep. CCHS patients are vulnerable to sleep disturbances associated with treatments, monitoring alarms, and care they receive. We hypothesized that sleep would be disrupted in CCHS patient’s due to ventilatory support and other treatments at night. Methods An anonymous survey of CCHS patients aged 0-17 years was conducted through REDCAP. Patients were recruited in person, by flyer, email, and social media. Data collected included demographics, PHOX2B genotype, ventilatory support, treatments, nursing, and sleep parameters. Results We received 22 responses (27% Female, 8.1 years ± 5.7). PHOX2B genotypes were 20/27 PARM (8), 20/26 PARM (2), 20/24 PARM (2), 20/25 PARM (4), ≥ 20/28 PARM (2), and 2 NPARM (2). Two respondents did not indicate the PHOX2B genotype. 13/22 were ventilated by PPV via tracheostomy, 7/22 by BPAP, and 2/22 by diaphragm pacing. Additional treatments received at night included suctioning (8), aerosol (1), G-tube feeding (2), and none (11). Only 9 received nursing at night. 13 used pulse oximetry for monitoring, and 9 used both pulse oximetry and end tidal CO2 monitor. 16/22 rarely woke up due to ventilator or monitor alarms. 15/22 slept within 20 minutes after going to bed. Sleep latency was not affected by mode of ventilation. 11/22 reported night waking ≥ 2 nights/week and 10/22 returned to sleep without help after night waking. 6/7 BPAP dependent patients reported low frequency of night waking (0-1 time/week). Of the PPV + trach group, 7/13 reported high frequency of night wakings, mostly 5-7 times/week. Conclusion Most CCHS patients do not awaken in response to ventilator alarms. Sleep is rarely disrupted by nursing or feeding intervention. We speculate that CCHS patients contemplating to live independently should be tested to see if they awaken in response to ventilator alarms. Support None

Mortality in infantile spasms: A hospital-based study.

To determine risk factors and causes for mortality during childhood in patients with infantile spasms (IS). We describe the overall goals of care for those who died. This is a retrospective chart review of IS patients born between 2000 and 2011. We examined potential risk factors for mortality, including etiology, neurologic impairment, medication use, persistence of epileptic spasms, and comorbid systemic involvement (requirement for G-tube feedings, respiratory interventions). For patients who died, we describe cause of death and resuscitation status or end-of-life care measures. We identified 150 IS patients with median follow-up of 12years. During the study period, 25 (17%) patients died, 13 before 5years of age. Univariate analysis demonstrated that developmental delay, identifiable etiology, hormonal use for IS, persistence of epileptic spasms, polypharmacy with antiseizure medications, refractory epilepsy, respiratory system comorbidity, and the need for a G-tube were significant risk factors for mortality. In a multivariate analysis, mortality was predicted by persistence of epileptic spasms (odds ratio [OR] = 4.30, 95% confidence interval [CI] = 1.11-16.67, P=.035) and significant respiratory system comorbidity (OR = 12.75, 95% CI = 2.88-56.32, P=.001). Mortality was epilepsy-related in one-third of patients who died with sudden unexpected death in epilepsy (SUDEP), accounting for 88% of epilepsy-related deaths. Most deaths before age 5years were related to respiratory failure, and SUDEP was less common (17%) whereas SUDEP was more common (45%) with deaths after 5 years. For the majority (67%) of patients with early mortality, an end-of-life care plan was in place (based on documentation of resuscitation status, comfort measures, or decision not to escalate medical care). Mortality at our single-center IS cohort was 17%, and persistence of epileptic spasms and comorbid respiratory system disorders were the most important determinants of mortality. Early deaths were related to neurological impairments/comorbidities. SUDEP was more common in children who died after 5years of age than in those who died younger than 5 years.

ÇOCUKLARDA GASTROSTOMİ PROSEDÜRÜ ÖNCESİ VE SONRASI EBEVEYNLERIN TUTUMU, BAKIŞ AÇISI VE DENEYİMLERİ: KANTİTATİF ÇALIŞMALARIN SİSTEMATİK DERLEMESİ

It is important to understand caregivers’ need for support from healthcare provider and the effect of gastrostomy tube feeding (G-tube feeding) on the lives of children and their caregivers before and after gastrostomy procedure. This systematic review aims to identify the opinions, attitudes and experiences of the caregivers related with G-tube feeding. We reviewed quantitative studies in English that deal with opinions, experiences and attitudes of caregivers before and after children’s gastrostomy procedure. In consultation with a medical librarian, we reviewed quantitative studies on our subject that were published up to 10 May 2015 by using five electronic databases, namely, CINAHL, PubMED, PSYCINFO, SCOPUS and Ovid Cochrane database of Systematic Reviewsfor quantitative studies. The quality of reviewed studies was evaluated by using JBI Critical Appraisal Checklist for Observational Studies. We identified 1897 citations and only eight studies from the citation list met the inclusion criteria. Five studies collected data after G-tube placement whereas the remaining three studies collected data during both the pre-procedural and post-procedural period. In six of these studies, outcomes were assessed by using objective criteria. None of the studies used questionnaires, whose reliability and validity were assessed for the country that the studies were conducted at. Caregivers in five of these studies expressed positive outcomes, such as, decreasing stress levels, increased satisfaction for the children and their parents, and improvements in the quality of life and the communication between the children and their parents. Three studies found both positive and negative impacts of G-tube placement on the lives of children and caregivers. Factors, such as, difficulty in reaching a final decision on G-Tube placement, inadequate information provided by healthcare professionals, restricted mobility, stress related with G-tube feeding, insufficient postoperative education program, and fear of unintentional loss of the gastrostomy button, were expressed as negative outcomes of G-tube feeding. Although some studies state that feeding with gastrostomy tube facilitates the lives of children and caregivers, some studies show that the gastrostomy tube adversely affects the lives of children and families. As a result, healthcare professionals should tend to inform families about all aspects of the procedure during the gastrostomy procedure, knowing these positive and negative consequences from studies.

Tube feeding outcomes of infants in a Level IV NICU.

BackgroundNICU patients are commonly discharged home with nasogastric (NG) or gastrostomy (G-tube) feeding, but wide practice variation exists. The objective of this study was to evaluate feeding and growth outcomes and complications in NICU patients discharged home with NG or G-tube feeding.Study designRetrospective cohort study of infants discharged from a Level IV NICU with an NG or G-tube who had follow up to 1 year. Clinical characteristics and outcomes were compared between groups.ResultsThe study sample included 264 infants: 140 with NG and 124 with G-tube. More infants in the G-tube group (65%) still required tube feedings 12 months post-discharge than infants in the NG group (24%). Infants in the G-tube group had more tube-related ER visits than infants in the NG group. Growth outcomes did not differ.ConclusionHome NG feeding may be a safe alternative to a surgically placed G-tube in select NICU patients.

Decision-making around gastrostomy tube feeding in children with neurologic impairment: Engaging effectively with families.

Children with neurologic impairment may not be able to feed safely or sufficiently by mouth to maintain an adequate nutritional state. Gastrostomy tube (G-tube) feeding is an important, often essential, intervention in such situations. However, many parents and families struggle with the decision to proceed with G-tube feeding. This practice point reviews common reasons for decisional conflict in parents and explores key aspects of life with G-tube feeding. A framework for shared decision-making and the International Classification of Functioning, Disability and Health (ICF) approach are highlighted. Practical recommendations for clinicians on engaging with families for decision-making around this life-changing intervention are provided.

Abstract TP319: Early Feeding Post G-tube Insertion is Safe in Stroke Patients

Introduction: Initiation of tube feeding (TF) via gastrostomy tube (G-tube) after insertion in dysphagic stroke patients is often delayed per physician preference with delayed feeding (DF) initiated at 12-24 hours being a common practice. Guidelines suggest that initiation of G-tube feeding (EF) within 4 hours after insertion is safe and does not lead to more complications. The stroke and interventional radiology (IR) physicians at a comprehensive stroke center agreed to an EF guideline in April 2016 and changed the post-insertion G-tube feed initiation time in all stroke patients from 24 hours to 6 hours. A year after, we conducted this retrospective study to understand the impact of EF guideline on TF timings. Methods: All stroke patients that had G-tubes placed by IR between April 2015 and April 2017 were eligible for inclusion in the study. Patients with non-stroke diagnoses were excluded, as were those whose tube feeds were never initiated. In addition to TF timings, data regarding complications and reasons for guideline deviation were recorded. Descriptive analyses were done for continuous and categorical variables. Results: Compared to pre-protocol patients (n= 37), the TF initiation time in EF group (n= 47, range 5-51 hours) decreased by 11.5 hours after institution of EF guidelines (25.8 hrs vs 14.2 hrs, p &lt; 0.0001 ). Only eight patients (17%) had TFs started by 6 hours, while twenty-one (44%) had TF started by 10 hours. There was a nonsignificant increase in complications after protocol initiation: 8 patients (17%) in the protocol group vs 4 (11%) in the pre-protocol group (OR = 1.69, 0.47 - 6.13, 95% CI). In five of eight patients in the protocol group who developed complications, TFs were initiated after 12 hours. No death was noted on account of EF. No significant difference in length of stay was noted. Delays in TF initiation were mostly due to failure to write appropriate orders (n=8) and less often for worsening in clinical status due to insertion related (n=2) or unrelated (n=2) complications. Conclusions: TF initiation time can be significantly improved with institution of an EF guideline without any significant increase in complications. With education, guideline compliance can be improved further.