Gastrostomy Tubes Placed in Children With Neurologic Impairment: Associated Morbidity and Mortality

Lin, Jody L.; Rigdon, Joseph; Haren, Keith Van; Buu, MyMy C.; Saynina, Olga; Bhattacharya, Jay; Owens, Douglas K; Sanders, Lee

doi:10.1177/08830738211000179

Cited by 8 publications

(4 citation statements)

References 30 publications

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“…Patients with CDD may experience dysphagia and require gastrostomy ( 2 ). Evidence suggests that gastrostomy tube feeding for pediatric patients with neurological impairments may reduce the risk of death although associated with an increased the risk of severe pneumonia ( 72 ). Guidelines produced by the European Society for Pediatric Gastroenterology, Hepatology and Nutrition, for the evaluation and treatment of gastrointestinal and nutritional complications in children with neurological impairment, recommends the use of enteral tube feeding in cases of unsafe of inefficient oral feeding, preferably before the development of undernutrition, and that a gastrostomy is the preferred way to provide intragastric access for long-term tube feeding for this population.…”

Section: Resultsmentioning

confidence: 99%

International Consensus Recommendations for the Assessment and Management of Individuals With CDKL5 Deficiency Disorder

et al. 2022

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CDKL5 Deficiency Disorder (CDD) is a rare, X-linked dominant condition that causes a developmental and epileptic encephalopathy (DEE). The incidence is between ~ 1:40,000 and 1:60,000 live births. Pathogenic variants in CDKL5 lead to seizures from infancy and severe neurodevelopmental delay. During infancy and childhood, individuals with CDD suffer impairments affecting cognitive, motor, visual, sleep, gastrointestinal and other functions. Here we present the recommendations of international healthcare professionals, experienced in CDD management, to address the multisystem and holistic needs of these individuals. Using a Delphi method, an anonymous survey was administered electronically to an international and multidisciplinary panel of expert clinicians and researchers. To provide summary recommendations, consensus was set, a priori, as >70% agreement for responses. In the absence of large, population-based studies to provide definitive evidence for treatment, we propose recommendations for clinical management, influenced by this proposed threshold for consensus. We believe these recommendations will help standardize, guide and improve the medical care received by individuals with CDD.

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Section: Resultsmentioning

confidence: 99%

International Consensus Recommendations for the Assessment and Management of Individuals With CDKL5 Deficiency Disorder

et al. 2022

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“…Strengths include the validity and generalizability of our findings, which are enhanced by population-level data that capture cross-provincial hospitalizations and deaths occurring in any location (eg, home, hospital, or hospice). We identified the cohort using a published list of diagnosis codes associated with high-intensity neurologic impairment 15 ; this list and analogous lists 28 have been used in many prior studies about children with SNI 23 , 29 , 30 , 31 ; in general, diagnostic code lists 14 work well to describe population-level trends in health care use. 32 …”

Section: Discussionmentioning

confidence: 99%

Recurrent Intensive Care Episodes and Mortality Among Children With Severe Neurologic Impairment

Nelson,

Zhu,

Thomson

et al. 2024

JAMA Netw Open

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ImportanceChildren requiring care in a pediatric intensive care unit (PICU) are known to have increased risk of subsequent mortality. Children with severe neurologic impairment (SNI)—who carry neurologic or genetic diagnoses with functional impairments and medical complexity—are frequently admitted to PICUs. Although recurrent PICU critical illness episodes (PICU-CIEs) are assumed to indicate a poor prognosis, the association between recurrent PICU-CIEs and mortality in this patient population is poorly understood.ObjectiveTo assess the association between number of recent PICU-CIEs and survival among children with severe neurologic impairment.Design, Setting, and ParticipantsThis population-based retrospective cohort study used health administrative data from April 1, 2002, to March 31, 2020, on 4774 children born between 2002 and 2019 with an SNI diagnosis code in an Ontario, Canada, hospital record before 16 years of age and a first PICU-CIE from 2002 to 2019. Data were analyzed from November 2021 to June 2023.ExposurePediatric intensive care unit critical illness episodes (excluding brief postoperative PICU admissions).Main Outcome and MeasuresOne-year survival conditioned on the number and severity (length of stay &gt;15 days or use of invasive mechanical ventilation) of PICU-CIEs in the preceding year.ResultsIn Ontario, 4774 children with SNI (mean [SD] age, 2.1 [3.6] months; 2636 [55.2%] &lt;1 year of age; 2613 boys [54.7%]) were discharged alive between 2002 and 2019 after their first PICU-CIE. Ten-year survival after the initial episode was 81% (95% CI, 79%-82%) for children younger than 1 year of age and 84% (95% CI, 82%-86%) for children 1 year of age or older; the age-stratified curves converged by 15 years after the initial episode at 79% survival (95% CI, 78%-81% for children &lt;1 year and 95% CI, 75%-84% for children ≥1 year). Adjusted for age category and demographic factors, the presence of nonneurologic complex chronic conditions (adjusted hazard ratio [AHR], 1.70 [95% CI, 1.43-2.02]) and medical technology assistance (AHR, 2.32 [95% CI, 1.92-2.81]) were associated with increased mortality. Conditional 1-year mortality was less than 20% regardless of number or severity of recent PICU-CIEs. Among children with high-risk PICU-CIEs, 1-year conditional survival decreased from 90% (95% CI, 89%-91%) after the first PICU-CIE to 81% (95% CI, 77%-86%) after the fourth PICU-CIE.Conclusions and RelevanceThis cohort study of children with SNI demonstrated a modest dose-dependent association between PICU-CIEs and short-term mortality. These data did not support the conventional wisdom that recurrent PICU admissions are associated with subsequent high mortality risk.

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“…The causes for the increased susceptibility to LRTI are complex and multifactorial. Risk factors for LRTIs include impaired secretion clearance (lower cough stimulus, ineffective cough), restrictive lung dysfunction, development of dys- and atelectasis, and micro- and macroaspiration due to dysphagia, seizures, or gastroesophageal reflux [ 8 – 11 ]. Polypharmacy in this patient group can also influence bone marrow function and lead to immunological side effects, e.g., due to secondary effects of antiepileptic drugs.…”

Section: Introductionmentioning

confidence: 99%

Clinical recommendations for the inpatient management of lower respiratory tract infections in children and adolescents with severe neurological impairment in Germany

Mauritz,

von Both,

Dohna-Schwake

et al. 2024

Eur J Pediatr

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Children and adolescents with severe neurological impairment (SNI) require specialized care due to their complex medical needs. In particular, these patients are often affected by severe and recurrent lower respiratory tract infections (LRTIs). These infections, including viral and bacterial etiology, pose a significant risk to these patients, often resulting in respiratory insufficiency and long-term impairments. Using expert consensus, we developed clinical recommendations on the management of LRTIs in children and adolescents with SNI. These recommendations emphasize comprehensive multidisciplinary care and antibiotic stewardship. Initial treatment should involve symptomatic care, including hydration, antipyretics, oxygen therapy, and respiratory support. In bacterial LRTIs, antibiotic therapy is initiated based on the severity of the infection, with aminopenicillin plus a beta-lactamase inhibitor recommended for community-acquired LRTIs and piperacillin-tazobactam for patients with chronic lung disease or tracheostomy. Ongoing management includes regular evaluations, adjustments to antibiotic therapy based on pathogen identification, and optimization of supportive care. Implementation of these recommendations aims to improve the diagnosis and treatment of LRTIs in children and adolescents with SNI. What is Known:• Children and adolescents with severe neurological impairment are particularly affected by severe and recurrent lower respiratory tract infections (LRTIs).• The indication and choice of antibiotic therapy for bacterial LRTI is often difficult because there are no evidence-based treatment recommendations for this heterogeneous but vulnerable patient population; the frequent overuse of broad-spectrum or reserve antibiotics in this patient population increases selection pressure for multidrug-resistant pathogens. What is New:• The proposed recommendations provide a crucial framework for focused diagnostics and treatment of LRTIs in children and adolescents with severe neurological impairment.• Along with recommendations for comprehensive and multidisciplinary therapy and antibiotic stewardship, ethical and palliative care aspects are taken into account.

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Gastrostomy Tubes Placed in Children With Neurologic Impairment: Associated Morbidity and Mortality

Cited by 8 publications

References 30 publications

International Consensus Recommendations for the Assessment and Management of Individuals With CDKL5 Deficiency Disorder

International Consensus Recommendations for the Assessment and Management of Individuals With CDKL5 Deficiency Disorder

Recurrent Intensive Care Episodes and Mortality Among Children With Severe Neurologic Impairment

Clinical recommendations for the inpatient management of lower respiratory tract infections in children and adolescents with severe neurological impairment in Germany

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