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1.
J Pediatr ; 247: 109-115.e2, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35569522

RESUMO

OBJECTIVE: To test associations between parent-reported confidence to avoid hospitalization and caregiving strain, activation, and health-related quality of life (HRQOL). STUDY DESIGN: In this prospective cohort study, enrolled parents of children with medical complexity (n = 75) from 3 complex care programs received text messages (at random times every 2 weeks for 3 months) asking them to rate their confidence to avoid hospitalization in the next month. Low confidence, as measured on a 10-point Likert scale (1 = not confident; 10 = fully confident), was defined as a mean rating <5. Caregiving measures included the Caregiver Strain Questionnaire, Family Caregiver Activation in Transition (FCAT), and caregiver HRQOL (Medical Outcomes Study Short Form 12 [SF12]). Relationships between caregiving and confidence were assessed with a hierarchical logistic regression and classification and regression trees (CART) model. RESULTS: The parents were mostly mothers (77%) and were linguistically diverse (20% spoke Spanish as their primary language), and 18% had low confidence on average. Demographic and clinical variables had weaker associations with confidence. In regression models, low confidence was associated with higher caregiver strain (aOR, 3.52; 95% CI, 1.45-8.54). Better mental HRQOL was associated with lower likelihood of low confidence (aOR, 0.89; 95% CI, 0.80-0.97). In the CART model, higher strain similarly identified parents with lower confidence. In all models, low confidence was not associated with caregiver activation (FCAT) or physical HRQOL (SF12) scores. CONCLUSIONS: Parents of children with medical complexity with high strain and low mental HRQOL had low confidence in the range in which intervention to avoid hospitalization would be warranted. Future work could determine how adaptive interventions to improve confidence and prevent hospitalizations should account for strain and low mental HRQOL.


Assuntos
Cuidadores , Qualidade de Vida , Criança , Hospitalização , Humanos , Estudos Prospectivos , Inquéritos e Questionários
2.
J Pediatr ; 230: 207-214.e1, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33253733

RESUMO

OBJECTIVE: To evaluate the associations between parent confidence in avoiding hospitalization and subsequent hospitalization in children with medical complexity (CMC); and feasibility/acceptability of a texting platform, Assessing Confidence at Times of Increased Vulnerability (ACTIV), to collect repeated measures of parent confidence. STUDY DESIGN: This prospective cohort study purposively sampled parent-child dyads (n = 75) in 1 of 3 complex care programs for demographic diversity to pilot test ACTIV for 3 months. At random days/times every 2 weeks, parents received text messages asking them to rate confidence in their child avoiding hospitalization in the next month, from 1 (not confident) to 10 (fully confident). Unadjusted and adjusted generalized estimating equations with repeated measures evaluated associations between confidence and hospitalization in the next 14 days. Post-study questionnaires and focus groups assessed ACTIV's feasibility/acceptability. RESULTS: Parents were 77.3% mothers and 20% Spanish-speaking. Texting response rate was 95.6%. Eighteen hospitalizations occurred within 14 days after texting, median (IQR) 8 (2-10) days. When confidence was <5 vs ≥5, adjusted odds (95% CI) of hospitalization within 2 weeks were 4.02 (1.20-13.51) times greater. Almost all (96.8%) reported no burden texting, one-third desired more frequent texts, and 93.7% were very likely to continue texting. Focus groups explored the meaning of responses and suggested ACTIV improvements. CONCLUSIONS: In this demographically diverse multicenter pilot, low parent confidence predicted impending CMC hospitalization. Text messaging was feasible and acceptable. Future work will test efficacy of real-time interventions triggered by parent-reported low confidence.


Assuntos
Atitude , Hospitalização/estatística & dados numéricos , Pais/psicologia , Telemedicina , Envio de Mensagens de Texto , Adulto , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Estudos Prospectivos , Autorrelato
3.
Matern Child Health J ; 23(9): 1167-1176, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31218608

RESUMO

INTRODUCTION: Despite the significant healthcare policy and program implications, a summary measure of health for children with medical complexity (CMC) has not been identified. It is unclear whether existing population health approaches apply to CMC. We conducted a systematic review of the existing peer-reviewed research literature on CMC to describe the health outcomes currently measured for CMC. METHODS: We searched MEDLINE and PsycINFO by linking combinations of key words from three groups of concepts: (1) pediatric, (2) medical complexity, and (3) chronicity or severity. Study eligibility criteria were research studies including CMC with any outcome reported. Data on the outcomes were systematically extracted. Iterative content analysis organized outcomes into conceptual domains and sub-domains. RESULTS: Our search yielded 3853 articles. After exclusion criteria were applied, 517 articles remained for data extraction. Five distinct outcome domains and twenty-four sub-domains emerged. Specifically, 50% of the articles studied healthcare access and use; 43% family well-being; 39% child health and well-being; 38% healthcare quality; and 25% adaptive functioning. Notably lacking were articles examining routine child health promotion as well as child mental health and outcomes related to family functioning. CONCLUSIONS: Key health domains for CMC exist. Adaptations of existing sets of metrics and additional tools are needed to fully represent and measure population health for CMC. This approach may guide policies and programs to improve care for CMC.


Assuntos
Serviços de Saúde da Criança/normas , Avaliação de Resultados em Cuidados de Saúde/normas , Vigilância da População/métodos , Criança , Serviços de Saúde da Criança/estatística & dados numéricos , Pré-Escolar , Humanos , Avaliação de Resultados em Cuidados de Saúde/estatística & dados numéricos , Qualidade da Assistência à Saúde/normas , Qualidade da Assistência à Saúde/estatística & dados numéricos , Análise de Sistemas
4.
Pediatr Cardiol ; 36(2): 314-21, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-25135602

RESUMO

Among infants with single ventricle congenital heart disease (SVD) requiring Stage I palliation (S1P), the impact of prenatal diagnosis (PD) on outcomes has been variably characterized. We investigated the impact of PD in a large multi-center cohort of survivors of S1P in the National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC) registry. Retrospective analysis of demographic and outcomes data among infants enrolled in the NPCQIC database; eligibility includes SVD requiring S1P and survival to discharge. From 43 contributing surgical centers, 591 infants had data available through time of BDG (519) or interstage death (55). Median gestational age was 39 weeks (31-46), and 66% had variants of hypoplastic left heart syndrome. PD was made in 445 (75%), with significant variation by center (p = 0.004). While infants with PD had slightly lower gestational age at birth (p < 0.001), there were no differences in birth weight, the presence of major syndromes or other organ system anomalies. Those without PD were more likely to have atrioventricular valve regurgitation (p = .002), ventricular dysfunction (p = 0.06), and pre-operative risk factors including acidosis (p < 0.001), renal insufficiency (p = 0.007), and shock (p = 0.05). Post-operative ventilation was shorter in the PD group (9 vs. 12 d, p = 0.002). Other early post-operative outcomes, interstage course, and outcomes at BDG were similar between groups. In a large cohort of infants with SVD surviving to hospital discharge after S1P, PD showed significant inter-site variation and was associated with improved pre-operative status and shorter duration of mechanical ventilation. The significance of such associations merits further study.


Assuntos
Doenças Fetais/diagnóstico , Feminino , Idade Gestacional , Cardiopatias Congênitas/cirurgia , Ventrículos do Coração/anormalidades , Humanos , Síndrome do Coração Esquerdo Hipoplásico/diagnóstico , Síndrome do Coração Esquerdo Hipoplásico/cirurgia , Masculino , Cuidados Paliativos , Melhoria de Qualidade , Sobreviventes
5.
Pediatr Cardiol ; 35(3): 431-40, 2014 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-24104215

RESUMO

The objective of this study is to identify predictors of prolonged intensive care unit (ICU) length of stay (LOS) for single ventricle patients following Stage I palliation. We hypothesize that peri-operative factors contribute to prolonged ICU stay among children with hypoplastic left heart syndrome (HLHS) and its variants. In 2008, as a part of the Joint Council on Congenital Heart Disease initiative, the National Pediatric Cardiology-Quality Improvement Collaborative established a data registry for patients with HLHS and its variants undergoing staged palliation. Between July 2008 and August 2011, 33 sites across the United States submitted discharge data essential to this analysis. Data describing the patients, their procedures, and their hospital experience were entered. LOS estimates were generated. Prolonged LOS in the ICU was defined as stay greater than or equal to 26 days (i.e., 75th percentile). Statistical analyses were carried out to identify pre-operative, operative, and post-operative predictors of prolonged LOS in the ICU. The number of patients with complete discharge data was 303, and these subjects were included in the analysis. Univariate and multivariate analyses were performed. Multivariate analysis revealed that lower number of enrolled participants (e.g., 1-10) per site, the presence of pre-operative acidosis, increased circulatory arrest time, the occurrence of a central line infection, and the development of respiratory insufficiency requiring re-intubation were associated with prolonged LOS in the ICU. Prolonged LOS in the ICU following Stage I palliation in patients with HLHS and HLHS variant anatomy is associated with site enrollment, circulatory arrest time, pre-operative acidosis, and some post-operative complications, including central line infection and re-intubation. Further study of these associations may reveal strategies for reducing LOS in the ICU following the Norwood and Norwood-variant surgeries.


Assuntos
Cardiopatias Congênitas/cirurgia , Tempo de Internação/estatística & dados numéricos , Melhoria de Qualidade , Feminino , Humanos , Recém-Nascido , Unidades de Terapia Intensiva Pediátrica , Masculino , Procedimentos de Norwood , Cuidados Paliativos , Complicações Pós-Operatórias , Valor Preditivo dos Testes , Sistema de Registros
6.
J Pediatr ; 163(4): 1027-33, 2013 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-23706518

RESUMO

OBJECTIVE: To test the hypothesis that missing primary care follow-up plans in the discharge summary is associated with higher 30-day readmissions. STUDY DESIGN: This retrospective cohort study included pediatric patients discharged from Mattel Children's Hospital, University of California, Los Angeles between July 2008 and July 2010. Exclusions included deaths, transfers, neonatal discharges, stays under 24 hours, and patients over 18 years of age. Bivariate and propensity weighted multivariate logistic regressions tested relationships between 30-day readmission and patient demographics, illness severity, and documentation of primary care provider (PCP) follow-up plans at discharge. RESULTS: There were 7794 index discharges (representing 5056 unique patients), with 1457 readmissions within 30 days (18.7%). Average length of stay was 6.3 days. Being 15-18 years old, (OR 1.42 [1.02-1.96]), having public insurance (OR 1.48 [1.20-1.83]), or having higher All-Patient Refined Diagnosis-Related Group severity scores (for severity = 4 vs 1, OR 6.88 [4.99-9.49]) was associated with increased odds of 30-day readmission. After adjusting for insurance status, Asian (OR 1.46 [1.01-2.12]) but not Black or Hispanic, race/ethnicity was associated with greater odds of readmission. Fifteen percent of 172 medical records from a randomly selected month in 2010 documented PCP follow-up plans. After adjusting for demographics, length of stay and severity, documenting PCP follow-up plans was associated with significantly increased odds of 30-day readmission (OR 4.52 [1.01-20.31]). CONCLUSION: Readmission rates are complex quality measures, and documenting primary care follow-up may be associated with higher rather than lower 30-day readmissions. Additional studies are needed to understand the inpatient-outpatient transition.


Assuntos
Alta do Paciente/estatística & dados numéricos , Readmissão do Paciente/estatística & dados numéricos , Atenção Primária à Saúde/métodos , Adolescente , Área Sob a Curva , Criança , Pré-Escolar , Atenção à Saúde/estatística & dados numéricos , Grupos Diagnósticos Relacionados/estatística & dados numéricos , Feminino , Humanos , Lactente , Tempo de Internação/estatística & dados numéricos , Masculino , Qualidade da Assistência à Saúde , Análise de Regressão , Estudos Retrospectivos , Índice de Gravidade de Doença
7.
Matern Child Health J ; 17(3): 463-9, 2013 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-22569944

RESUMO

The Pediatric Medical Home Program at UCLA enrolled 41 patients in a primary care model focused on providing intensive care coordination for medically complex, ethnically diverse children with special health care needs (CSHCN) in our Pediatric Resident Continuity clinic. We sought to determine the effect of our program on parental satisfaction, and to compare differences in parental satisfaction between English and Spanish speaking patients. The Medical Home Family Index, developed by the Center for Medical Home Improvement, was administered to a total of 22 participating parents, in the family's primary language by a native speaker, at various times after enrollment in the program. Survey data and language effects were analyzed. The 36 standardized mean scores for the 15 Spanish speaking families were significantly higher (8.5 points higher) than the mean scores from the seven English speaking families (p = 0.003). Although no statistically significant differences were noted in individual questions between Spanish and English speakers, a trend towards more positive responses by Spanish speakers was noted in questions regarding physician-patient communication (p = 0.054) and family-centeredness (p = 0.053). Our results suggest that a primary care model focused on providing intensive care coordination produces positive parental perceptions of the organization and delivery of primary care services in a medically complex population of CSHCN. The main finding of the study is that utilizing the AAP's approach to the medical home model, emphasizing family-centered and culturally competent care, can produce higher satisfaction scores in Spanish speaking parents when compared to English speaking parents.


Assuntos
Crianças com Deficiência/estatística & dados numéricos , Pais/psicologia , Assistência Centrada no Paciente/estatística & dados numéricos , Qualidade da Assistência à Saúde/estatística & dados numéricos , Adolescente , Serviços de Saúde da Criança/organização & administração , Serviços de Saúde da Criança/estatística & dados numéricos , Pré-Escolar , Comportamento do Consumidor , Atenção à Saúde/estatística & dados numéricos , Etnicidade , Feminino , Pesquisas sobre Atenção à Saúde , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Necessidades e Demandas de Serviços de Saúde , Hispânico ou Latino , Humanos , Masculino , Pessoa de Meia-Idade , Pediatria , Percepção , Avaliação de Programas e Projetos de Saúde , Fatores Socioeconômicos
8.
BMJ Open ; 13(8): e074147, 2023 08 17.
Artigo em Inglês | MEDLINE | ID: mdl-37591653

RESUMO

OBJECTIVE: To understand caregiver, healthcare professional and national expert perspectives on implementation of a just-in-time adaptive intervention, RE-PACT (Respiratory Exacerbation-Plans for Action and Care Transitions) to prevent respiratory crises in severe cerebral palsy. DESIGN: Qualitative research study. SETTING: Paediatric complex care programmes at two academic medical institutions. PARTICIPANTS: A total of n=4 focus groups were conducted with caregivers of children with severe cerebral palsy and chronic respiratory illness, n=4 with healthcare professionals, and n=1 with national experts. METHODS: Participants viewed a video summarising RE-PACT, which includes action planning, mobile health surveillance of parent confidence to avoid hospitalisation and rapid clinical response at times of low confidence. Moderated discussion elicited challenges and benefits of RE-PACT's design, and inductive thematic analysis elicited implementation barriers and facilitators. RESULTS: Of the 19 caregivers recruited, nearly half reported at least one hospitalisation for their child in the prior year. Healthcare professionals and national experts (n=26) included physicians, nurses, respiratory therapists, social workers and researchers. Four overarching themes and their barriers/facilitators emphasised the importance of design and interpersonal relationships balanced against health system infrastructure constraints. Intervention usefulness in crisis scenarios relies on designing action plans for intuitiveness and accuracy, and mobile health surveillance tools for integration into daily life. Trust, knowledge, empathy and adequate clinician capacity are essential components of clinical responder-caregiver relationships. CONCLUSIONS: RE-PACT's identified barriers are addressable. Just-in-time adaptive interventions for cerebral palsy appear well-suited to address families' need to tailor intervention content to levels of experience, preference and competing demands.


Assuntos
Paralisia Cerebral , Criança , Humanos , Paralisia Cerebral/terapia , Pesquisa Qualitativa , Pessoal de Saúde , Grupos Focais , Pessoal Técnico de Saúde
9.
Dev Dyn ; 239(7): 1941-9, 2010 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-20549739

RESUMO

To investigate cardiac physiology at the onset of heart beating in embryonic mouse hearts, we performed optical imaging of membrane potential (Vm) and/or intracellular calcium (Ca(i)). Action potentials and Ca(i) transients were detected in approximately 50% of mouse embryo hearts at E8.5, but in all hearts at E9.0, indicating that beating typically starts between E8-E9. Beating was eliminated by Ca channel blocker nifedipine and the I(f) blocker ZD7288, unaffected by tetrodotoxin and only mildly depressed by disabling sarcoplasmic (SR) and endoplasmic (ER) reticulum Ca cycling. From E8.5 to E10, conduction velocity increased from 0.2-1 mm/s to >5 mm/s in first ventricular and then atrial tissue, while remaining slow in other areas. Arrhythmias included atrioventricular reentry induced by adenosine. In summary, at the onset of beating, I(f)-dependent pacemaking drives both AP propagation and Ca(i) transient generation through activation of voltage-dependent Ca channels. Na channels and intracellular Ca cycling have minor roles.


Assuntos
Arritmias Cardíacas/fisiopatologia , Bloqueio Atrioventricular/fisiopatologia , Coração/efeitos dos fármacos , Coração/fisiologia , Potenciais de Ação/efeitos dos fármacos , Animais , Arritmias Cardíacas/induzido quimicamente , Bloqueio Atrioventricular/induzido quimicamente , Cálcio/metabolismo , Bloqueadores dos Canais de Cálcio/farmacologia , Feminino , Imunofluorescência , Coração/embriologia , Masculino , Potenciais da Membrana/efeitos dos fármacos , Camundongos , Nifedipino/farmacologia , Gravidez
10.
J Pediatr ; 156(6): 1006-1010, 2010 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-20223482

RESUMO

OBJECTIVE: To study the integration of comprehensive care coordination for children with complex disease in our resident education clinic at University of California Los Angeles by analyzing alterations in medical resource use. STUDY DESIGN: The Pediatric Medical Home Project at University of California Los Angeles was designed to include 4 basic elements: 1) 60-minute intake appointment; 2) follow-up appointments twice the length of a standard visit; 3) access to a "family liaison"; and 4) a family notebook ("All about Me" binder). From the initial cohort of 43 patients, encounter data on 30 were analyzed to determine use of outpatient, urgent, emergency department (ED), and inpatient services. Encounters for each patient were compared for a period of 1 year before and 1 year after enrollment. RESULTS: The average number of ED visits per patient decreased from 1.1 +/- 1.7 before enrollment to 0.5 +/- 0.9 after medical home enrollment (P = .02). However, no significant change was found in use of any of the other health care resources studied. CONCLUSIONS: Incorporating a program of care coordination according to the principles of the medical home into an outpatient pediatric residency teaching clinic may not only serve as a training vehicle for pediatric residents, but also create favorable alterations in medical resource use.


Assuntos
Internato e Residência , Ambulatório Hospitalar/organização & administração , Assistência Centrada no Paciente/organização & administração , Pediatria/educação , Adolescente , Criança , Pré-Escolar , Currículo , Serviço Hospitalar de Emergência/estatística & dados numéricos , Feminino , Humanos , Lactente , Tempo de Internação , Los Angeles , Masculino , Modelos Organizacionais , Projetos Piloto
11.
Cardiol Young ; 18 Suppl 2: 116-23, 2008 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-19063781

RESUMO

This review includes a brief discussion, from the perspective of the pediatric cardiologist, of the rationale for creation and maintenance of multi-institutional databases of outcomes of the treatment of patients with congenital and paediatric cardiac disease, together with a history of the evolution of such databases, and a description of the current state of the art. A number of projects designed to have broad-based impact are currently in the design phase, or have already been implemented. Not surprisingly, most of the efforts thus far have focused on catheterization procedures and interventions, although some work examining other aspects of paediatric cardiology practice is also beginning. This review briefly describes several European and North American initiatives related to databases for pediatric and congenital cardiology including the Central Cardiac Audit Database of the United Kingdom, national database initiatives for pediatric cardiology in Switzerland and Germany, various database initiatives under the leadership of the Working Groups of The Association for European Paediatric Cardiology, the IMPACT Registry (IMproving Pediatric and Adult Congenital Treatment) of the National Cardiovascular Data Registry of The American College of Cardiology Foundation and The Society for Cardiovascular Angiography and Interventions (SCAI), the Mid-Atlantic Group of Interventional Cardiology (MAGIC) Catheterization Outcomes Project, the Congenital Cardiac Catheterization Project on Outcomes (C3PO), the Congenital Cardiovascular Interventional Study Consortium (CCISC), and the Joint Council on Congenital Heart Disease (JCCHD) National Quality Improvement Initiative. These projects, each leveraging multicentre data and collaboration, demonstrate the enormous progress that has occurred over the last several years to improve the quality and consistency of information about nonsurgical treatment for congenital cardiac disease. The paediatric cardiology field is well-poised to move quickly beyond outcome assessment and benchmarking, to collaborative quality improvement.


Assuntos
Cardiologia/estatística & dados numéricos , Bases de Dados Factuais/tendências , Cardiopatias/cirurgia , Avaliação de Resultados em Cuidados de Saúde/métodos , Sistema de Registros/normas , Criança , Europa (Continente) , Cardiopatias Congênitas/cirurgia , Humanos , Disseminação de Informação/métodos , Avaliação de Resultados em Cuidados de Saúde/tendências , Estados Unidos
12.
Pediatrics ; 142(2)2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29997169

RESUMO

OBJECTIVES: We sought to examine the effect of a caregiver coaching intervention, Plans for Action and Care Transitions (PACT), on hospital use among children with medical complexity (CMC) within a complex care medical home at an urban tertiary medical center. METHODS: PACT was an 18-month caregiver coaching intervention designed to influence key drivers of hospitalizations: (1) recognizing critical symptoms and conducting crisis plans and (2) supporting comprehensive hospital transitions. Usual care was within a complex care medical home. Primary outcomes included hospitalizations and 30-day readmissions. Secondary outcomes included total charges and mortality. Intervention effects were examined with bivariate and multivariate analyses. RESULTS: From December 2014 to September 2016, 147 English- and Spanish-speaking CMC <18 years old and their caregivers were randomly assigned to PACT (n = 77) or usual care (n = 70). Most patients were Hispanic, Spanish-speaking, and publicly insured. Although in unadjusted intent-to-treat analyses, only charges were significantly reduced, both hospitalizations and charges were lower in adjusted analyses. Hospitalization rates (per 100 child-years) were 81 for PACT vs 101 for usual care (adjusted incident rate ratio: 0.61 [95% confidence interval 0.38-0.97]). Adjusted mean charges per patient were $14 206 lower in PACT. There were 0 deaths in PACT vs 4 in usual care (log-rank P = .04). CONCLUSIONS: Among CMC within a complex care program, a health coaching intervention designed to identify, prevent, and manage patient-specific crises and postdischarge transitions appears to lower hospitalizations and charges. Future research should confirm findings in broader populations and care models.


Assuntos
Cuidadores/educação , Tutoria/métodos , Alta do Paciente , Readmissão do Paciente , Transferência de Pacientes/métodos , Criança , Pré-Escolar , Assistência Integral à Saúde/métodos , Assistência Integral à Saúde/tendências , Feminino , Hospitalização/tendências , Humanos , Masculino , Tutoria/tendências , Alta do Paciente/tendências , Readmissão do Paciente/tendências , Transferência de Pacientes/tendências , Assistência Centrada no Paciente/métodos , Assistência Centrada no Paciente/tendências
13.
Pediatrics ; 142(3)2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-30120101

RESUMO

BACKGROUND AND OBJECTIVES: Defining and measuring health for children with medical complexity (CMC) is poorly understood. We engaged a diverse national sample of stakeholder experts to generate and then synthesize a comprehensive list of health outcomes for CMC. METHODS: With national snowball sampling of CMC caregiver, advocate, provider, researcher, and policy or health systems experts, we identified 182 invitees for group concept mapping (GCM), a rigorous mixed-methods approach. Respondents (n = 125) first completed Internet-based idea generation by providing unlimited short, free-text responses to the focus prompt, "A healthy life for a child or youth with medical complexity includes: ___." The resulting 707 statements were reduced to 77 unique ideas. Participants sorted the ideas into clusters based on conceptual similarity and rated items on perceived importance and measurement feasibility. Responses were analyzed and mapped via GCM software. RESULTS: The cluster map best fitting the data had 10 outcome domains: (1) basic needs, (2) inclusive education, (3) child social integration, (4) current child health-related quality of life, (5) long-term child and family self-sufficiency, (6) family social integration, (7) community system supports, (8) health care system supports, (9) a high-quality patient-centered medical home, and (10) family-centered care. Seventeen outcomes representing 8 of the 10 domains were rated as both important and feasible to measure ("go zone"). CONCLUSIONS: GCM identified a rich set of CMC outcome domains. Go-zone items provide an opportunity to test and implement measures that align with a broad view of health for CMC and potentially all children.


Assuntos
Saúde da Criança , Crianças com Deficiência , Avaliação de Resultados em Cuidados de Saúde/métodos , Criança , Serviços de Saúde da Criança , Formação de Conceito , Humanos , Qualidade de Vida
14.
Circulation ; 114(6): 543-9, 2006 Aug 08.
Artigo em Inglês | MEDLINE | ID: mdl-16880324

RESUMO

BACKGROUND: During development, AV conduction switches from base-to-apex to apex-to-base conduction after emergence of the conduction system. We hypothesize that after this transition, the bulk of the AV ring, although no longer required for AV conduction, remains transiently able to conduct, providing a potential arrhythmia substrate. We studied AV conduction during this transition and its sensitivity to autonomic modulation. METHODS AND RESULTS: Simultaneous voltage and Ca2+ mapping with RH-237 and Rhod-2 was performed with 2 CCD cameras in embryonic mouse hearts (n = 43). Additionally, isolated calcium mapping was performed in 309 hearts with fluo-3AM. Propagation patterns in voltage and Ca2+ mapping coincided. Arrhythmias were uncommon under basal conditions, with AV block in 14 (4%) and junctional rhythms in 4 (1%). Arrhythmias increased after stimulation with isoproterenol-junctional rhythm in 9 (3%) and ventricular rhythms in 22 (6%)-although AV block decreased (3 hearts, 1%). Adding carbachol after isoproterenol caused dissociated antegrade and retrograde AV ring conduction in 30 (8.6%) of E10.5 and E11.5 hearts, occurring preferentially in the right and left sides of the ring, respectively. In 2 cases, reentry occurred circumferentially around the AV ring, perpendicular to normal propagation. Reentry persisted for multiple beats, lasting from 3 to 22 minutes. No episodes of AV ring reentry occurred in E9.5 hearts. CONCLUSIONS: AV ring reentry can occur by spatial dissociation of antegrade and retrograde conduction during combined adrenergic and muscarinic receptor stimulation. Critical maturation (> E9.5) seems to be required to sustain reentry.


Assuntos
Nó Atrioventricular/fisiologia , Sistema de Condução Cardíaco/fisiologia , Coração/embriologia , Coração/fisiologia , Taquicardia por Reentrada no Nó Atrioventricular/fisiopatologia , Agonistas Adrenérgicos beta/farmacologia , Animais , Arritmias Cardíacas/fisiopatologia , Cálcio/análise , Carbacol/farmacologia , Cardiotônicos/farmacologia , Coração/efeitos dos fármacos , Isoproterenol/farmacologia , Camundongos , Miocárdio/química , Receptores Adrenérgicos/análise , Receptores Adrenérgicos/fisiologia , Receptores Muscarínicos/análise , Receptores Muscarínicos/fisiologia
15.
Acad Pediatr ; 17(6): 581-588, 2017 08.
Artigo em Inglês | MEDLINE | ID: mdl-28457939

RESUMO

The medical home has been widely promoted as a model of primary care with the potential to transform the health care delivery system. Although this model was initially focused on children with chronic conditions, the American Academy of Pediatrics has endorsed a generalization of the model, promoting the statement, "Every child deserves a medical home." Recently, other major professional and governmental organizations have embraced this more inclusive vision, and the medical home concept has been promoted in provisions of the Affordable Care Act. Yet, rigorous evaluations of the value of the medical home, within pediatrics and beyond, have been limited, and the results have been mixed. Early results from large demonstration projects in adults have generally noted modest improvements in quality without accompanying reductions in cost. At this critical period in health care, with widespread interest in health care delivery and payment reform, these results present a potential threat to the medical home. Understanding possible reasons for these early findings is crucial to sustaining the spread of the medical home beyond its first 50 years. With this aim, we review the history of the medical home and trends in child health, and we explore the concepts of value and complexity as they pertain to pediatric health care delivery. We propose that, because of the demographic characteristics and economics of child health and current policy imperatives with regard to health care, a strong value proposition for the medical home in pediatrics involves children with medical complexity.


Assuntos
Serviços de Saúde da Criança/organização & administração , Crianças com Deficiência , Assistência Centrada no Paciente , Adolescente , Adulto , Criança , Serviços de Saúde da Criança/economia , Pré-Escolar , Análise Custo-Benefício , Atenção à Saúde , Reforma dos Serviços de Saúde , Humanos , Patient Protection and Affordable Care Act , Assistência Centrada no Paciente/economia , Assistência Centrada no Paciente/métodos , Assistência Centrada no Paciente/organização & administração , Avaliação de Programas e Projetos de Saúde , Estados Unidos
16.
Acad Pediatr ; 17(6): 672-677, 2017 08.
Artigo em Inglês | MEDLINE | ID: mdl-28246024

RESUMO

OBJECTIVE: Because children with medical complexity (CMC) display very different health trajectories, needs, and resource utilization than other children, it is unclear how well traditional conceptions of population health apply to CMC. We sought to identify key health outcome domains for CMC as a step toward determining core health metrics for this distinct population of children. METHODS: We conducted and analyzed interviews with 23 diverse national experts on CMC to better understand population health for CMC. Interviewees included child and family advocates, health and social service providers, and research, health systems, and policy leaders. We performed thematic content analyses to identify emergent themes regarding population health for CMC. RESULTS: Overall, interviewees conveyed that defining and measuring population health for CMC is an achievable, worthwhile goal. Qualitative themes from interviews included: 1) CMC share unifying characteristics that could serve as the basis for population health outcomes; 2) optimal health for CMC is child specific and dynamic; 3) health of CMC is intertwined with health of families; 4) social determinants of health are especially important for CMC; and 5) measuring population health for CMC faces serious conceptual and logistical challenges. CONCLUSIONS: Experts have taken initial steps in defining the population health of CMC. Population health for CMC involves a dynamic concept of health that is attuned to individual, health-related goals for each child. We propose a framework that can guide the identification and development of population health metrics for CMC.


Assuntos
Atitude do Pessoal de Saúde , Serviços de Saúde da Criança , Crianças com Deficiência/psicologia , Pessoal de Saúde/psicologia , Criança , Serviços de Saúde da Criança/organização & administração , Pré-Escolar , Feminino , Humanos , Entrevistas como Assunto , Masculino , Avaliação das Necessidades , Assistência Centrada no Paciente , Saúde da População , Resultado do Tratamento
17.
Acad Pediatr ; 17(4): 381-388, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28108374

RESUMO

OBJECTIVE: Interventions to reduce disproportionate hospital use among children with medical complexity (CMC) are needed. We conducted a rigorous, structured process to develop intervention strategies aiming to reduce hospitalizations within a complex care program population. METHODS: A complex care medical home program used 1) semistructured interviews of caregivers of CMC experiencing acute, unscheduled hospitalizations and 2) literature review on preventing hospitalizations among CMC to develop key drivers for lowering hospital utilization and link them with intervention strategies. Using an adapted version of the RAND/UCLA Appropriateness Method, an expert panel rated each model for effectiveness at impacting each key driver and ultimately reducing hospitalizations. The complex care program applied these findings to select a final set of feasible intervention strategies for implementation. RESULTS: Intervention strategies focused on expanding access to familiar providers, enhancing general or technical caregiver knowledge and skill, creating specific and proactive crisis or contingency plans, and improving transitions between hospital and home. Activities aimed to facilitate family-centered, flexible implementation and consideration of all of the child's environments, including school and while traveling. Tailored activities and special attention to the highest utilizing subset of CMC were also critical for these interventions. CONCLUSIONS: A set of intervention strategies to reduce hospitalizations among CMC, informed by key drivers, can be created through a structured, reproducible process. Both this process and the results may be relevant to clinical programs and researchers aiming to reduce hospital utilization through the medical home for CMC.


Assuntos
Cuidadores/educação , Serviços de Saúde da Criança/organização & administração , Doença Crônica/terapia , Atenção à Saúde/organização & administração , Acessibilidade aos Serviços de Saúde , Assistência Centrada no Paciente/organização & administração , Administração de Caso/organização & administração , Criança , Epilepsia/terapia , Feminino , Gastrostomia , Conhecimentos, Atitudes e Prática em Saúde , Hospitalização , Visita Domiciliar , Humanos , Masculino , Planejamento de Assistência ao Paciente/organização & administração , Melhoria de Qualidade , Traqueostomia , Cuidado Transicional/organização & administração , Derivação Ventriculoperitoneal
18.
J Hosp Med ; 12(1): 29-35, 2017 01.
Artigo em Inglês | MEDLINE | ID: mdl-28125824

RESUMO

BACKGROUND: Improvement in hospital transitional care has become a major national priority, although the impact on children's postdischarge outcomes is unclear. OBJECTIVE: To characterize common handoff practices between hospital and primary care providers (PCPs), and test the hypothesis that common handoff practices would be associated with fewer unplanned readmissions. DESIGN, SETTING, AND PATIENTS: This prospective cohort study enrolled randomly selected pediatric patients during an acute hospitalization at a tertiary children's hospital in 2012-2014. MEASUREMENTS: Primary care and patient data were abstracted from administrative, caregiver, and PCP questionnaires on admission through 30 days postdischarge. The primary outcome was 30-day unplanned readmission to any hospital. Logistic regression assessed relationships between readmissions and 11 handoff communication practices. RESULTS: We enrolled 701 children, from which 685 identified PCPs. Complete data were collected from 84% of PCPs. Communication practices varied widely--verbal handoffs occurred rarely (10.7%); PCP notification of admission occurred for 50.8%. Caregiver experience scores, using an adapted Care Transitions Measure-3, were high but were unrelated to readmissions. Thirty-day unplanned readmissions to any hospital were unrelated to most handoff practices. Having PCP follow-up appointments scheduled prior to discharge was associated with more readmissions (adjusted odds ratio, 2.20; 95% confidence interval, 1.08-4.46). CONCLUSION: Despite their presumed value, common handoff practices between hospital providers and PCPs may not lead to reductions in postdischarge utilization for children. Addressing broader constructs like caregiver self-efficacy or social determinants is likely necessary. Journal of Hospital Medicine 2017;12:29-35.


Assuntos
Comunicação , Hospitais Pediátricos , Alta do Paciente , Readmissão do Paciente , Criança , Hospitalização , Humanos , Médicos de Atenção Primária , Estudos Prospectivos
19.
Cell Calcium ; 39(5): 375-85, 2006 May.
Artigo em Inglês | MEDLINE | ID: mdl-16545869

RESUMO

In the present study, we combined optical Ca(2+) imaging with immunocytochemistry studies to characterize autonomic regulation of Ca(2+) cycling during early development in isolated embryonic mouse hearts. At embryonic days 9.5-11.5 (E9.5-E11.5), the Ca(2+) transient originated in the superior portion of the right atrium, propagated rapidly through both atria, slowly through the atrio-ventricular (AV) ring, and rapidly through both ventricles. Isoproterenol (ISO) significantly increased heart rate, increased Ca(2+) transient amplitude, rate of rise (RR) and a rate of decay, and shortened AV conduction time, indicating the presence of functional beta-adrenergic receptors. The muscarinic agonist carbachol (CCh) had no effects until 1 day later at E10.5. Both beta1-adrenergic and M2 muscarinic receptors were detected in ventricular muscle sections by immunochemistry at E10.5. Growing nerves, labeled using growth-associated protein 43 antibodies, were detected at the E14.5 stage, but not at E10.5, whereas mature sympathetic nerves, detected by tyrosine hydroxylase (TH) labeling, were not yet present at E14.5. These results demonstrate that functional regulation of Ca(2+) cycling by beta-adrenergic receptors occurs earliest in developing embryonic mouse hearts, followed a day later by muscarinic receptor responsiveness, with autonomic innervation developing later. These results define the functional and structural sequence of autonomic regulation of Ca(2+) transient in the embryonic mouse heart.


Assuntos
Sistema Nervoso Autônomo/fisiologia , Cálcio/metabolismo , Coração/embriologia , Coração/inervação , Miocárdio/metabolismo , Transdução de Sinais , Fatores Etários , Animais , Sistema Nervoso Autônomo/embriologia , Membrana Celular/metabolismo , Feminino , Sistema de Condução Cardíaco , Frequência Cardíaca , Ventrículos do Coração/embriologia , Ventrículos do Coração/crescimento & desenvolvimento , Ventrículos do Coração/inervação , Imuno-Histoquímica , Camundongos , Miocárdio/citologia , Receptores Adrenérgicos beta/metabolismo , Receptores Muscarínicos/metabolismo , Transdução de Sinais/fisiologia
20.
J Am Coll Cardiol ; 46(5): 893-8, 2005 Sep 06.
Artigo em Inglês | MEDLINE | ID: mdl-16139141

RESUMO

OBJECTIVES: The purpose of this study was to evaluate adult congenital heart disease (CHD) training among U.S. cardiology fellowship programs. BACKGROUND: Although training recommendations for caring for adults with CHD exist, the educational patterns and numbers of specialists remain unknown. METHODS: We surveyed U.S. directors of 170 adult cardiology and 45 pediatric cardiology (PC) fellowship programs. Adult program surveys contained 1 single-response and 10 multiple-choice questions; pediatric program surveys contained 1 single-response and 13 multiple-choice questions. RESULTS: Ninety-four adult cardiology fellowship directors (55%) and 34 PC directors (76%) responded. Of adult programs, 70% were in university hospitals and 40% were associated with PC groups. Those with PC-affiliation had more adult CHD clinics (p < 0.02) and more adult CHD inpatient (p < 0.02) and outpatient (p < 0.002) visits than those without PC affiliation. Most PC programs were in children's hospitals (38%) or children's hospitals within adult hospitals (50%). Eighty-two percent had associated adult cardiology programs. Pediatric programs followed adult CHD patients in various care settings. Over one-third of adult and pediatric programs had < or = 3 lectures annually regarding adult CHD. Nine adult and 2 pediatric programs offered adult CHD fellowships, and only 31 adult and 11 pediatric fellows pursued advanced CHD training in the last 10 years. CONCLUSIONS: Adult CHD didactic and clinical experiences for cardiology fellows vary widely. Few programs offer advanced CHD training, and the number of specially trained physicians is unlikely to meet projected workforce requirements. Adult cardiology programs with PC affiliation have increased CHD experience and might provide good educational models.


Assuntos
Cardiologia/educação , Educação de Pós-Graduação em Medicina/normas , Bolsas de Estudo , Cardiopatias Congênitas , Pediatria/educação , Avaliação de Programas e Projetos de Saúde , Adulto , Criança , Coleta de Dados , Educação de Pós-Graduação em Medicina/economia , Humanos , Modelos Educacionais , Estados Unidos
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