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1.
JMIR Res Protoc ; 13: e60621, 2024 Sep 09.
Artigo em Inglês | MEDLINE | ID: mdl-39250787

RESUMO

BACKGROUND: This study will pilot-test the mobile app, Medication Safety @HOME-Meds@HOME intervention to improve medication administration accuracy, reduce preventable adverse drug events, and ultimately improve chronic care management for children with medical complexity (CMC). The Meds@HOME app was co-designed with CMC families, secondary caregivers (SCGs), and health professionals to support medication management for primary caregivers (PCGs) and SCGs of CMC. We hypothesize that Meds@HOME will improve caregivers' medication administration accuracy, reduce preventable adverse drug events, and ultimately improve chronic care management. OBJECTIVE: This study aims to evaluate the effectiveness of Meds@HOME on medication administration accuracy for PCGs and SCGs. METHODS: This study will recruit up to 152 PCGs and 304 SCGs of CMC who are prescribed at least 1 scheduled high-risk medication and receive care at the University of Wisconsin American Family Children's Hospital. PCGs will be randomly assigned, for the 6-month trial, to either the control group (not trialing Meds@HOME) or the intervention group (trialing Meds@HOME) using 1:1 ratio. The Meds@HOME app allows caregivers to create a child profile, store medication and care instructions, and receive reminders for upcoming and overdue care routines and medication refills. Surveys completed both at the start and end of the trial measure demographics, medication delivery knowledge, confidence in the CMC's caregiving network, and comfort with medical information. Univariate and multivariate generalized estimation equations will be used for primary statistical analysis. The primary outcome is the PCG's rate of medication administration accuracy measured as correct identification of each of the following for a randomly selected high-risk medication: indication, formulation, dose, frequency, and route at baseline and after 6 months. Secondary outcomes include SCG medication administration accuracy (indication, formulation, dose, frequency, and route), count of University of Wisconsin hospital and emergency department encounters, PCG-reported medication adherence, count of deaths, and PCG medication confidence and understanding. RESULTS: Recruitment for this study began on November 29, 2023. As of May 15, 2024, we have enrolled 94/152 (62%) PCGs. We expect recruitment to end by August 1, 2024, and the final participant will complete the study by January 28, 2025, at which point we will start analyzing the complete responses. We expect publication of results at the end of 2025. CONCLUSIONS: The Meds@HOME mobile app provides a promising strategy for improving PCG medication safety for CMC who take high-risk medications. In addition, this protocol highlights novel procedures for recruiting SCGs of CMC. In the future, this app could be used more broadly across diverse caregiving networks to navigate complex medication routines and promote medication safety. TRIAL REGISTRATION: ClinicalTrials.gov NCT05816590; https://clinicaltrials.gov/study/NCT05816590. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/60621.


Assuntos
Aplicativos Móveis , Humanos , Criança , Cuidadores , Masculino , Feminino , Erros de Medicação/prevenção & controle , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/prevenção & controle
2.
Acad Pediatr ; 2024 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-39096999

RESUMO

OBJECTIVES: Children with medical complexity (CMC), a subgroup of children with special health care needs (CSHCN) with the most serious medical conditions and disabilities, are at risk for negative effects from poor oral health. CSHCN have high rates of poor oral health including cavities. This study aimed to compare oral health status between CMC and CSHCN. METHODS: This was a cross-sectional analysis of the 2016-17 National Survey of Child Health data. CMC and CSHCN were identified using validated algorithms. The primary outcome was oral health status; secondary outcomes included dental service use. Bivariate analyses compared prevalence and service use by medical complexity status. Multivariable logistic regression assessed oral health outcomes by complexity, adjusting for influencing variables. RESULTS: Of 16,178 CSHCN ages 1-17 years, 6% were CMC and 94% were non-CMC CSHCN. Compared to CSHCN, CMC had a higher prevalence of fair/poor teeth conditions (19% vs 9%; p<0.001) and higher odds for fair/poor teeth conditions after adjusting for socioeconomic factors (aOR: 1.54; 95% CI: 1.01-2.34). There was no statically significant difference between groups when assessing cavities, toothache, or receipt of most preventive dental services. CONCLUSION: 1 in 5 CMC are reported by caregivers as having poor oral health including cavities, despite high rates of receiving preventive dental services. After adjusting for socioeconomic factors, medical complexity remained associated with fair or poor teeth conditions. Understanding potentially modifiable targets could further help families of CMC prioritize dental needs and potentially reduce negative effects on overall health.

3.
JAMA Netw Open ; 7(7): e2420579, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-39008301

RESUMO

Importance: Since implementation of the International Statistical Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) in the US, thousands of new or related codes have been added to represent clinical conditions. The widely used pediatric complex chronic condition (CCC) system required a major update from version 2 (V2) to version 3 (V3) to capture the range of clinical conditions represented in the ICD-10-CM. Objective: To update the CCC V3 system, creating V3, with new, missing, or retired codes; to reconceptualize the system's use of technology codes; and to compare CCC V3 with V2. Design, Setting, and Participants: This repeated cross-sectional study examined US hospitalization data from the Pediatric Health Information System (PHIS) and the Medicaid Merative MarketScan Research Databases from January 1, 2009, to December 31, 2019, for all patients aged 0 to 18 years. Data were analyzed from March 1, 2023, to April 1, 2024. Exposures: The CCCs were identified in both data sources using the CCC V2 and V3 systems. Main Outcomes and Measures: The (1) percentage of pediatric hospitalizations associated with a CCC, (2) numbers of CCC body-system categories per patient, and (3) explanatory power for hospital length of stay and in-hospital mortality were compared over time for V3 vs V2. Results: Among 7 186 019 hospitalizations within PHIS, 54.3% patients were male, the median age was 4 years (IQR, 1-11 years), and 51.2% were aged 0 to 4 years). The CCC V2 identified 2 878 476 (40.1%) patients as having any CCC compared with 2 753 412 (38.3%) identified by V3. In addition, V2 identified 100 065 (1.4%) patients with transplant status compared with 146 683 (2.0%) by V3, and V2 identified 914 835 (12.7%) as having technology codes compared with 805 585 (11.2%) by V3. The 2 systems were similar in accounting for the number of CCC body-system categories per patient and in explaining variation in hospital length of stay and in-hospital mortality. For both V2 and V3, 10.0% of the variance in hospital length of stay and 12.0% of the variance in in-hospital mortality was explained by the presence of a CCC. Similar patterns were observed when analyzing the 2 999 420 Medicaid Merative MarketScan Research Databases' hospitalizations (52.3% of patients were male, the median age was 1 year [IQR, 0-12 years], and 62.0% were 0 to 4 years old), except that the percentages of identified CCCs were all lower: V2 identified 758 110 hospitalizations (25.3%) with any CCC compared with 718 100 (23.9%) identified by V3. Conclusions and Relevance: These results suggest that, moving forward, V3 should be used to identify CCCs, and ongoing, frequent updates to V3, using a transparent, structured process, will enable V3 to accurately reflect the evolving spectrum of clinical conditions represented in the ICD-10-CM.


Assuntos
Classificação Internacional de Doenças , Humanos , Criança , Estudos Transversais , Pré-Escolar , Doença Crônica , Masculino , Adolescente , Feminino , Lactente , Estados Unidos , Recém-Nascido , Hospitalização/estatística & dados numéricos , Bases de Dados Factuais
5.
JAMA Netw Open ; 7(3): e241852, 2024 Mar 04.
Artigo em Inglês | MEDLINE | ID: mdl-38488795

RESUMO

Importance: Children 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. Objective: To assess the association between number of recent PICU-CIEs and survival among children with severe neurologic impairment. Design, Setting, and Participants: This 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. Exposure: Pediatric intensive care unit critical illness episodes (excluding brief postoperative PICU admissions). Main Outcome and Measures: One-year survival conditioned on the number and severity (length of stay >15 days or use of invasive mechanical ventilation) of PICU-CIEs in the preceding year. Results: In Ontario, 4774 children with SNI (mean [SD] age, 2.1 [3.6] months; 2636 [55.2%] <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 <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 Relevance: This 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.


Assuntos
Estado Terminal , Doenças do Sistema Nervoso , Criança , Masculino , Humanos , Pré-Escolar , Estudos de Coortes , Estudos Retrospectivos , Cuidados Críticos , Ontário/epidemiologia
6.
JAMA Netw Open ; 7(2): e2355707, 2024 Feb 05.
Artigo em Inglês | MEDLINE | ID: mdl-38349656

RESUMO

Importance: There are an increasing number of medications with a high level of evidence for pharmacogenetic-guided dosing (PGx drugs). Knowledge of the prevalence of dispensings of PGx drugs and their associated genes may allow hospitals and clinical laboratories to determine which pharmacogenetic tests to implement. Objectives: To investigate the prevalence of outpatient dispensings of PGx drugs among Medicaid-insured youths, determine genes most frequently associated with PGx drug dispenses, and describe characteristics of youths who were dispensed at least 1 PGx drug. Design, Setting, and Participants: This serial cross-sectional study includes data from 2011 to 2019 among youths aged 0 to 17 years in the Marketscan Medicaid database. Data were analyzed from August to December 2022. Main Outcomes and Measures: PGx drugs were defined as any medication with level A evidence as determined by the Clinical Pharmacogenetics Implementation Consortium (CPIC). The number of unique youths dispensed each PGx drug in each year was determined. PGx drugs were grouped by their associated genes for which there was CPIC level A evidence to guide dosing, and a dispensing rate (No. of PGx drugs/100 000 youths) was determined for each group for the year 2019. Demographics were compared between youths dispensed at least 1 PGx drug and those not dispensed any PGx drugs. Results: The number of Medicaid-insured youths queried ranged by year from 2 078 683 youths in 2011 to 4 641 494 youths in 2017, including 4 126 349 youths (median [IQR] age, 9 [5-13] years; 2 129 926 males [51.6%]) in 2019. The proportion of Medicaid-insured youths dispensed PGx drugs increased from 289 709 youths (13.9%; 95% CI, 13.8%-14.0%) in 2011 to 740 072 youths (17.9%; 95% CI, 17.9%-18.0%) in 2019. Genes associated with the most frequently dispensed medications were CYP2C9, CYP2D6, and CYP2C19 (9197.0 drugs [95% CI, 9167.7-9226.3 drugs], 8731.5 drugs [95% CI, 8702.5-8759.5 drugs], and 3426.8 drugs [95% CI, 3408.1-3443.9 drugs] per 100 000 youths, respectively). There was a higher percentage of youths with at least 1 chronic medical condition among youths dispensed at least 1 PGx drug (510 445 youths [69.0%; 95% CI, 68.8%-69.1%]) than among 3 386 277 youths dispensed no PGx drug (1 381 544 youths [40.8%; 95% CI, 40.7%-40.9%) (P < .001) in 2019. Conclusions and Relevance: In this study, there was an increasing prevalence of dispensings for PGx drugs. This finding suggests that pharmacogenetic testing of specific drug-gene pairs should be considered for frequently prescribed PGx drugs and their implicated genes.


Assuntos
Medicaid , Testes Farmacogenômicos , Masculino , Estados Unidos , Humanos , Adolescente , Pré-Escolar , Criança , Estudos Transversais , Citocromo P-450 CYP2D6 , Bases de Dados Factuais
7.
Pediatrics ; 153(2)2024 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-38174350

RESUMO

BACKGROUND AND OBJECTIVES: Drug-drug interactions (DDIs) can cause adverse drug events, but little is known about DDI exposure in children in the outpatient setting. This study aimed to determine the prevalence of major DDI exposure and factors associated with higher DDI exposure rates among children in an outpatient setting. METHODS: We performed a cross-sectional study of children aged 0 to 18 years with ≥1 ambulatory encounter, and ≥2 dispensed outpatient prescriptions study using the 2019 Marketscan Medicaid database. DDIs (exposure to a major DDI for ≥1 day) and the adverse physiologic effects of each DDI were identified using DrugBank's interaction database. Primary outcomes included the prevalence and rate of major DDI exposure. We used logistic regression to assess patient characteristics associated with DDI exposure. We examined the rate of DDI exposures per 100 children by adverse physiologic effects category, and organ-level effects (eg, heart rate-corrected QT interval prolongation). RESULTS: Of 781 019 children with ≥2 medication exposures, 21.4% experienced ≥1 major DDI exposure. The odds of DDI exposure increased with age and with medical and mental health complexity. Frequently implicated drugs included: Clonidine, psychiatric medications, and asthma medications. The highest adverse physiologic effect exposure rate per 100 children included: Increased drug concentrations (14.6), central nervous system depression (13.6), and heart rate-corrected QT interval prolongation (9.9). CONCLUSIONS: One in 5 Medicaid-insured children with ≥2 prescription medications were exposed to major DDIs annually, with higher exposures in those with medical or mental health complexity. DDI exposure places children at risk for negative health outcomes and adverse drug events, especially in the harder-to-monitor outpatient setting.


Assuntos
Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Pacientes Ambulatoriais , Criança , Humanos , Estudos Transversais , Medicaid , Interações Medicamentosas
8.
Appl Clin Inform ; 15(1): 45-54, 2024 01.
Artigo em Inglês | MEDLINE | ID: mdl-37989249

RESUMO

BACKGROUND: Children with medical complexity (CMC) are uniquely vulnerable to medication errors and preventable adverse drug events because of their extreme polypharmacy, medical fragility, and reliance on complicated medication schedules and routes managed by undersupported family caregivers. There is an opportunity to improve CMC outcomes by designing health information technologies that support medication administration accuracy, timeliness, and communication within CMC caregiving networks. OBJECTIVES: The present study engaged family caregivers, secondary caregivers, and clinicians who work with CMC in a codesign process to identify: (1) medication safety challenges experienced by CMC caregivers and (2) design requirements for a mobile health application to improve medication safety for CMC in the home. METHODS: Study staff recruited family caregivers, secondary caregivers, and clinicians from a children's hospital-based pediatric complex care program to participate in virtual codesign sessions. During sessions, the facilitator-guided codesigners in generating and converging upon medication safety challenges and design requirements. Between sessions, the research team reviewed notes from the session to identify design specifications and modify the prototype. After design sessions concluded, each session recording was reviewed to confirm that all designer comments had been captured. RESULTS: A total of N = 16 codesigners participated. Analyses yielded 11 challenges to medication safety and 11 corresponding design requirements that fit into three broader challenges: giving the right medication at the right time; communicating with others about medications; and accommodating complex medical routines. Supporting quotations from codesigners and prototype features associated with each design requirement are presented. CONCLUSION: This study generated design requirements for a tool that may improve medication safety by creating distributed situation awareness within the caregiving network. The next steps are to pilot test tools that integrate these design requirements for usability and feasibility, and to conduct a randomized control trial to determine if use of these tools reduces medication errors.


Assuntos
Cuidadores , Telemedicina , Criança , Humanos , Comunicação
9.
JAMA Health Forum ; 4(7): e232253, 2023 07 07.
Artigo em Inglês | MEDLINE | ID: mdl-37505488

RESUMO

This Viewpoint discusses how the International Classification of Diseases, 11th Revision (ICD-11), made available in January 2022, will affect the US health care system.


Assuntos
Atenção à Saúde , Classificação Internacional de Doenças , Organização Mundial da Saúde
10.
Hosp Pediatr ; 13(8): e207-e210, 2023 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-37497585

RESUMO

OBJECTIVE: The accuracy of diagnosis codes to identify suicidal behaviors, including suicide ideation (SI) and self-harm (SH) events, is unknown. The objective of this study was to determine the positive predictive value (PPV) of International Classification of Disease, 10th Revision codes to identify SI/SH events that may be used in studies using administrative and claims data. METHODS: We performed a secondary analysis of a cross-sectional study of children 5 to 17 years of age hospitalized at 2 US children's hospitals with a discharge diagnosis of a neuropsychiatric event, including an SI or SH event. A true International Classification of Disease, 10th Revision SI or SH diagnosis was defined as SI or SH present on admission and directly related to hospitalization as compared with physician record review. PPV with 95% confidence intervals (CIs) were calculated overall and stratified by diagnosis order and age (5 to 11 years vs 12 to 17 years). RESULTS: There were 376 children or adolescents with a discharge diagnosis of an SI or SH event. The median age was 14 years, and the majority of individuals were female (58%), non-Hispanic White (69%), and privately insured (57%). A total of 332 confirmed SI/SH cases were identified with a PPV of 0.88 (95% CI 0.85-0.91). PPVs were similar when stratified by diagnosis order: primary 0.94 (95% 0.88-0.97) versus secondary 0.86 (95% CI 81-90). PPVs were also similar in adolescents (0.89, CI 0.85-0.92) compared with children (0.84, 95% CI 0.74-0.91). CONCLUSIONS: The use of these validated code sets to identify SI or SH events may minimize misclassification in future studies of suicidal and self-harm hospitalizations.


Assuntos
Comportamento Autodestrutivo , Ideação Suicida , Criança , Adolescente , Humanos , Masculino , Feminino , Pré-Escolar , Classificação Internacional de Doenças , Valor Preditivo dos Testes , Estudos Transversais , Comportamento Autodestrutivo/diagnóstico , Comportamento Autodestrutivo/epidemiologia
11.
Pediatr Dermatol ; 40(5): 863-865, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37364926

RESUMO

The most common bacteria isolated from wound cultures in patients recorded in the Epidermolysis Bullosa Clinical Characterization and Outcomes Database (EBCCOD) are Staphylococcus aureus and Pseudomonas aeruginosa. Given the prevalence of P. aeruginosa in this patient population and prior research implicating P. aeruginosa's potential role in carcinogenesis, we sought to further analyze patients with recorded wound cultures positive for Pseudomonas aeruginosa in the EBCCOD. We provide a descriptive analysis of this subset of patients and highlight potential avenues for future longitudinal studies that may have significant implications in our wound care management for patients with epidermolysis bullosa.


Assuntos
Epidermólise Bolhosa , Pseudomonas aeruginosa , Humanos , Epidermólise Bolhosa/complicações , Epidermólise Bolhosa/microbiologia
12.
Pediatrics ; 151(6)2023 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-37125480

RESUMO

OBJECTIVES: To identify patterns of psychiatric comorbidity among children and adolescents with a serious self-harm event. METHODS: We studied children aged 5 to 18 years hospitalized with a neuropsychiatric event at 2 children's hospitals from April 2016 to March 2020. We used Bayesian profile regression to identify distinct clinical profiles of risk for self-harm events from 32 covariates: age, sex, and 30 mental health diagnostic groups. Odds ratios (ORs) and 95% credible intervals (CIs) were calculated compared with a reference profile with the overall baseline risk of the cohort. RESULTS: We included 1098 children hospitalized with a neuropsychiatric event (median age 14 years [interquartile range (IQR) 11-16]). Of these, 406 (37%) were diagnosed with a self-harm event. We identified 4 distinct profiles with varying risk for a self-harm diagnosis. The low-risk profile (median 0.035 [IQR 0.029-0.041]; OR 0.08, 95% CI 0.04-0.15) was composed primarily of children aged 5 to 9 years without a previous psychiatric diagnosis. The moderate-risk profile (median 0.30 [IQR 0.27-0.33]; reference profile) included psychiatric diagnoses without depressive disorders. Older female adolescents with a combination of anxiety, depression, substance, and trauma disorders characterized the high-risk profile (median 0.69 [IQR 0.67-0.70]; OR 5.09, 95% CI 3.11-8.38). Younger males with mood and developmental disorders represented the very high-risk profile (median 0.76 [IQR 0.73-0.79]; OR 7.21, 95% CI 3.69-15.20). CONCLUSIONS: We describe 4 separate profiles of psychiatric comorbidity that can help identify children at elevated risk for a self-harm event and subsequent opportunities for intervention.


Assuntos
Comportamento Autodestrutivo , Masculino , Humanos , Criança , Feminino , Adolescente , Teorema de Bayes , Comportamento Autodestrutivo/epidemiologia , Comportamento Autodestrutivo/psicologia , Transtornos de Ansiedade/diagnóstico , Ansiedade/diagnóstico , Comorbidade
13.
NPJ Digit Med ; 6(1): 89, 2023 May 19.
Artigo em Inglês | MEDLINE | ID: mdl-37208468

RESUMO

Common data models solve many challenges of standardizing electronic health record (EHR) data but are unable to semantically integrate all of the resources needed for deep phenotyping. Open Biological and Biomedical Ontology (OBO) Foundry ontologies provide computable representations of biological knowledge and enable the integration of heterogeneous data. However, mapping EHR data to OBO ontologies requires significant manual curation and domain expertise. We introduce OMOP2OBO, an algorithm for mapping Observational Medical Outcomes Partnership (OMOP) vocabularies to OBO ontologies. Using OMOP2OBO, we produced mappings for 92,367 conditions, 8611 drug ingredients, and 10,673 measurement results, which covered 68-99% of concepts used in clinical practice when examined across 24 hospitals. When used to phenotype rare disease patients, the mappings helped systematically identify undiagnosed patients who might benefit from genetic testing. By aligning OMOP vocabularies to OBO ontologies our algorithm presents new opportunities to advance EHR-based deep phenotyping.

14.
BMC Health Serv Res ; 23(1): 414, 2023 Apr 29.
Artigo em Inglês | MEDLINE | ID: mdl-37120509

RESUMO

BACKGROUND: Children with medical complexity (CMC) often rely upon the use of multiple medications to sustain quality of life and control substantial symptom burden. Pediatric polypharmacy (≥ 5 concurrent medications) is prevalent and increases the risk of medication-related problems (MRPs). Although MRPs are associated with pediatric morbidity and healthcare utilization, polypharmacy is infrequently assessed during routine clinical care for CMC. The aim of this randomized controlled trial is to determine if a structured pharmacist-led Pediatric Medication Therapy Management (pMTM) intervention reduces MRP counts, as well as the secondary outcomes of symptom burden and acute healthcare utilization. METHODS: This is a hybrid type 2 randomized controlled trial assessing the effectiveness of pMTM compared to usual care in a large, patient-centered medical home for CMC. Eligible patients include all children ages 2-18 years old, with ≥ 1 complex chronic condition, and with ≥ 5 active medications, as well as their English-speaking primary caregivers. Child participants and their primary parental caregivers will be randomized to pMTM or usual care before a non-acute primary care visit and followed for 90 days. Using generalized linear models, the overall effectiveness of the intervention will be evaluated using total MRP counts at 90 days following pMTM intervention or usual care visit. Following attrition, a total of 296 CMC will contribute measurements at 90 days, which provides > 90% power to detect a clinically significant 1.0 reduction in total MRPs with an alpha level of 0.05. Secondary outcomes include Parent-Reported Outcomes of Symptoms (PRO-Sx) symptom burden scores and acute healthcare visit counts. Program replication costs will be assessed using time-driven activity-based scoring. DISCUSSION: This pMTM trial aims to test hypotheses that a patient-centered medication optimization intervention delivered by pediatric pharmacists will result in lower MRP counts, stable or improved symptom burdens, and fewer cumulative acute healthcare encounters at 90 days following pMTM compared to usual care. The results of this trial will be used to quantify medication-related outcomes, safety, and value for a high-utilization group of CMC, and outcomes may elucidate the role of integrated pharmacist services as a key component of outpatient complex care programs for this priority pediatric population. TRIAL REGISTRATION: This trial was prospectively registered at clinicaltrials.gov (NCT05761847) on Feb 25, 2023.


Assuntos
Conduta do Tratamento Medicamentoso , Polimedicação , Humanos , Criança , Pré-Escolar , Adolescente , Qualidade de Vida , Assistência Centrada no Paciente/métodos
16.
Orphanet J Rare Dis ; 18(1): 38, 2023 02 23.
Artigo em Inglês | MEDLINE | ID: mdl-36823529

RESUMO

BACKGROUND: Anemia is a common complication of severe forms of epidermolysis bullosa (EB). To date, there are no guidelines outlining best clinical practices to manage anemia in the EB population. The objective of this manuscript is to present the first consensus guidelines for the diagnosis and management of anemia in EB. RESULTS: Due to the lack of high-quality evidence, a consensus methodology was followed. An initial survey exploring patient preferences, concerns and symptoms related to anemia was sent to EB patients and their family members. A second survey was distributed to EB experts and focused on screening, diagnosis, monitoring and management of anemia in the different types of EB. Information from these surveys was collated and used by the panel to generate 26 consensus statements. Consensus statements were sent to healthcare providers that care for EB patients through EB-Clinet. Statements that received more than 70% approval (completely agree/agree) were adopted. CONCLUSIONS: The end result was a series of 6 recommendations which include 20 statements that will help guide management of anemia in EB patients. In patients with moderate to severe forms of EB, the minimum desirable level of Hb is 100 g/L. Treatment should be individualized. Dietary measures should be offered as part of management of anemia in all EB patients, oral iron supplementation should be used for mild anemia; while iron infusion is reserved for moderate to severe anemia, if Hb levels of > 80-100 g/L (8-10 g/dL) and symptomatic; and transfusion should be administered if Hb is < 80 g/L (8 g/dL) in adults and < 60 g/L (6 g/dL) in children.


Assuntos
Anemia , Epidermólise Bolhosa Distrófica , Epidermólise Bolhosa , Criança , Adulto , Humanos , Epidermólise Bolhosa/complicações , Epidermólise Bolhosa/diagnóstico , Epidermólise Bolhosa/terapia , Anemia/diagnóstico , Anemia/tratamento farmacológico , Anemia/etiologia , Consenso , Pessoal de Saúde , Ferro
18.
J Hosp Med ; 18(1): 65-77, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36484088

RESUMO

OBJECTIVE: The aim of this study is to extrapolate the clinical features of children with severe neurologic impairment (SNI) based on the functional characteristics and comorbidities described in published studies. METHODS: Four databases were searched. We included studies that describe clinical features of a group of children with SNI (≥20 subjects <19 years of age with >1 neurologic diagnosis and severe functional limitation) using data from caregivers, medical charts, or prospective collection. Studies that were not written in English were excluded. We extracted data about functional characteristics, comorbidities, and study topics. RESULTS: We included 102 studies, spanning 5 continents over 43 years, using 41 distinct terms for SNI. The terms SNI and neurologic impairment (NI) were used in 59 studies (58%). Most studies (n = 81, 79%) described ≥3 types of functional characteristics, such as technology assistance and motor impairment. Studies noted 59 comorbidities and surgeries across 10 categories. The most common comorbidities were related to feeding, nutrition, and the gastrointestinal system, which were described in 79 studies (77%). Most comorbidities (76%) were noted in <10 studies. Studies investigated seven clinical topics, with "Gastrointestinal reflux and feeding tubes" as the most common research focus (n = 57, 56%). The next most common topic, "Aspiration and respiratory issues," included 13 studies (13%). Most studies (n = 54, 53%) were retrospective cohorts or case series; there were no clinical trials. CONCLUSIONS: Despite the breadth of described comorbidities, studies focused on a narrow set of clinical topics. Further research is required to understand the prevalence, clinical impact, and interaction of the multiple comorbidities that are common in children with SNI.


Assuntos
Cuidadores , Doenças do Sistema Nervoso , Criança , Humanos , Estudos Retrospectivos , Estudos Prospectivos , Comorbidade , Doenças do Sistema Nervoso/diagnóstico , Doenças do Sistema Nervoso/epidemiologia
19.
Clin Infect Dis ; 76(3): e1040-e1046, 2023 02 08.
Artigo em Inglês | MEDLINE | ID: mdl-35867691

RESUMO

BACKGROUND: National guidelines recommend antiviral treatment for children with influenza at high risk for complications regardless of symptom duration. Little is known about concordance of clinical practice with this recommendation. METHODS: We performed a cross-sectional study of outpatient children (aged 1-18 years) at high risk for complications who were diagnosed with influenza during the 2016-2019 influenza seasons. High-risk status was determined using an existing definition that includes age, comorbidities, and residence in a long-term care facility. The primary outcome was influenza antiviral dispensing within 2 days of influenza diagnosis. We determined patient- and provider-level factors associated with guideline-concordant treatment using multivariable logistic regression. RESULTS: Of the 274 213 children with influenza at high risk for influenza complications, 159 350 (58.1%) received antiviral treatment. Antiviral treatment was associated with the presence of asthma (aOR, 1.13; 95% confidence interval [CI], 1.11-1.16), immunosuppression (aOR, 1.10; 95% CI, 1.05-1.16), complex chronic conditions (aOR, 1.04; 95% CI, 1.01-1.07), and index encounter in the urgent care setting (aOR, 1.3; 95% CI, 1.26-1.34). Factors associated with decreased odds of antiviral treatment include age 2-5 years compared with 6-17 years (aOR, 0.95; 95% CI, .93-.97), residing in a chronic care facility (aOR, .61; 95% CI, .46-.81), and index encounter in an emergency department (aOR, 0.66; 95% CI, .63-.71). CONCLUSIONS: Among children with influenza at high risk for complications, 42% did not receive guideline-concordant antiviral treatment. Further study is needed to elucidate barriers to appropriate use of antivirals in this vulnerable population.


Assuntos
Antivirais , Influenza Humana , Criança , Humanos , Antivirais/uso terapêutico , Influenza Humana/complicações , Influenza Humana/tratamento farmacológico , Influenza Humana/epidemiologia , Estudos Transversais , Casas de Saúde , Assistência Ambulatorial
20.
J Pain Symptom Manage ; 65(2): e109-e114, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36332769

RESUMO

CONTEXT: Children with severe neurological impairment and polypharmacy are exposed to anticholinergic (AC) medications that may have anticholinergic side effects, but this is understudied. Anticholinergic Cognitive Burden (ACB) scores measure total anticholinergic burden for a medication regimen, and scores ≥3 have been associated with increased morbidity and mortality in adults. OBJECTIVE: We assessed the relationship between ACB scores and parent-reported anticholinergic symptoms in children. METHODS: Cross-sectional study of patients one to 18 years-old with ICD-defined severe neurological impairment and polypharmacy. At routine clinical visits, total ACB scores were computed for all medications. Parent-reported AC symptoms (constipation, drowsiness, difficulty concentrating, dry mouth, or urinary problems) were assessed. Multivariable logistic regression was used to test the association between total ACB scores ≥3 for scheduled medications and the presence of AC symptoms, adjusted for age and recent acute healthcare utilization. RESULTS: Among 123 unique patients, 87% were prescribed AC medications. Common AC medication classes included: systemic antihistamines (64%), anxiolytics (53%), antidepressants (30%), H2 blockers (22%), and muscle relaxants (20%). Total ACB scores ≥3 were observed in 44% for scheduled medications and in 63% of patients for scheduled plus PRN medications. Total ACB scores ≥3 were significantly associated with an increased odds of ≥1 anticholinergic symptoms for scheduled medications (OR: 3.1; 95% CI: 1.4, 6.7) and for scheduled plus PRN medications (OR: 2.9; 95% CI: 1.3, 6.4). CONCLUSION: If replicated in larger populations, the association between elevated total ACB scores and anticholinergic side effects in children should prompt clinicians to consider deprescribing potentially unneeded anticholinergic medications.


Assuntos
Antagonistas Colinérgicos , Atenção à Saúde , Humanos , Criança , Lactente , Pré-Escolar , Adolescente , Antagonistas Colinérgicos/efeitos adversos , Estudos Transversais
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