Timing of Co-occurring Chronic Conditions in Children With Neurologic Impairment
children chronic conditions medical complexity neurological disorders
BACKGROUND: Children with neurologic impairment (NI) are at risk for developing co-occurring chronic conditions, increasing their medical complexity and morbidity. We assessed the prevalence and timing of onset for those conditions in children with NI. METHODS: This longitudinal analysis included 6229 children born in 2009 and continuously enrolled in Medicaid through 2015 with a diagnosis of NI by age 3 in the IBM Watson Medicaid MarketScan Database. NI was defined with an existing diagnostic code set encompassing neurologic, genetic, and metabolic conditions that result in substantial functional impairments requiring subspecialty medical care. The prevalence and timing of co-occurring chronic conditions was assessed with the Agency for Healthcare Research and Quality Chronic Condition Indicator system. Mean cumulative function was used to measure age trends in multimorbidity. RESULTS: The most common type of NI was static (56.3%), with cerebral palsy (10.0%) being the most common NI diagnosis. Respiratory (86.5%) and digestive (49.4%) organ systems were most frequently affected by co-occurring chronic conditions. By ages 2, 4, and 6 years, the mean (95% confidence interval [CI]) numbers of co-occurring chronic conditions were 3.7 (95% CI 3.7-3.8), 4.6 (95% CI 4.5-4.7), and 5.1 (95% CI 5.1-5.2). An increasing percentage of children had ≥9 co-occurring chronic conditions as they aged: 5.3% by 2 years, 10.0% by 4 years, and 12.8% by 6 years. CONCLUSIONS: Children with NI enrolled in Medicaid have substantial multimorbidity that develops early in life. Increased attention to the timing and types of multimorbidity in children with NI may help optimize their preventive care and case management health services.
Thomson J; Hall M; Nelson K; Flores JC; Garrity B; DeCourcey DD; Agrawal R; Goodman DM; Feinstein JA; Coller RJ; Cohen E; Kuo DZ; Antoon JW; Houtrow AJ; Bastianelli L; Berry JG
Pediatrics
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2020-009217" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-009217</a>
Emerging Methodologies in Pediatric Palliative Care Research: Six Case Studies
Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research and the novel methods we have identified to target them. Specifically, we discuss potential approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery.
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Nelson K; Feinstein J; Gerhardt C; Rosenberg A; Widger K; Faerber J; Feudtner C
Children
2018
<a href="http://doi.org/10.3390/children5030032" target="_blank" rel="noreferrer noopener">10.3390/children5030032</a>
Effect of Permanent Feeding Tube Placement on Healthcare Utilization Among Children with Neurologic Impairment (TH340A)
Child; Enteral Nutrition; Only Child; child
Nelson K; Rosella L; Mahant S; Guttmann A; Cohen E
Journal of Pain and Symptom Management
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.041" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.041</a>
The Validity of Using Health Administrative Data To Identify the Involvement of Specialized Pediatric Palliative Care Teams in Children with Cancer in Ontario, Canada.
BACKGROUND: Population-based research to identify underserviced populations and the impact of palliative care (PC) is limited as the validity of such data to identify PC services is largely unknown. OBJECTIVE: To determine the validity of using such data to identify the involvement of specialized pediatric PC teams among children with cancer. DESIGN: Retrospective cohort. SUBJECTS: Ontario children with cancer who died between 2000 and 2012, received care through a pediatric institution with a specialized PC team and a clinical PC database. MEASUREMENTS: All patients in the clinical databases were linked to population-based health services administrative databases. Six algorithms were created to indicate the use of formal pediatric PC teams based on the record type (physician billings vs. inpatient records vs. both) and number of eligible codes required (>/=1 vs. >/=2). Each was validated against the pediatric PC clinical databases. RESULTS: The cohort comprised 572 children; 243 were in the clinical databases. Algorithms using only inpatient records had high specificity (80%-95%) but poor sensitivity (21%-56%). Including physician billings increased sensitivity but lowered specificity. The algorithm with overall best performance required >/=2 physician billing or inpatient diagnosis codes indicating PC [sensitivity 0.79 (95% CI 0.73-0.84), specificity 0.58 (95% CI 0.53-0.64)]. CONCLUSIONS: Health administrative data identifies involvement of specialized pediatric PC teams with good sensitivity but low specificity. Studies using such data alone to compare patients receiving and not receiving specialized pediatric PC are at significant risk of misclassification and potential bias. Population-based PC databases should be established to conduct rigorous population-based PC research.
Widger K; Vadeboncoeur C; Zelcer S; Liu Y; Kassam A; Sutradhar R; Rapoport A; Nelson K; Wolfe J; Earle C; Pole JD; Gupta S
Journal Of Palliative Medicine
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1089/jpm.2017.0028" target="_blank" rel="noreferrer">10.1089/jpm.2017.0028</a>