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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-PACTs 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-PACTs 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.

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

ObjectiveTo 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 designThis 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.ResultsParents 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

ObjectivesWe 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.MethodsPACT 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.ResultsFrom December 2014 to September 2016, 147 English- and Spanish-speaking CMC

ObjectiveBecause 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.MethodsWe 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.ResultsOverall, 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.ConclusionsExperts 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.

ObjectiveTo identify subgroups of U.S. children with special health care needs (CSHCN) and characterize key outcomes.Data sourceSecondary analysis of 2009-2010 National Survey of CSHCN.Study designLatent class analysis grouped individuals into substantively meaningful classes empirically derived from measures of pediatric medical complexity. Outcomes were compared among latent classes with weighted logistic or negative binomial regression.Principal findingsLCA identified four unique CSHCN subgroups: broad functional impairment (physical, cognitive, and mental health) with extensive health care (Class 1), broad functional impairment alone (Class 2), predominant physical impairment requiring family-delivered care (Class 3), and physical impairment alone (Class 4). CSHCN from Class 1 had the highest ED visit rates (IRR 3.3, p

One of the most notable trends in child health has been the increase in the number of children with special health care needs, including those with complex chronic conditions. Care of these children accounts for a growing fraction of health care resources. We examine recent developments in health care, especially with regard to medical transport and prehospital care, that have emerged to adapt to this remarkable demographic trend. One such development is the focus on care coordination, including the dissemination of the patient-centered medical home concept. In the prehospital setting, the need for greater coordination has catalyzed the development of the emergency information form. Training programs for prehospital providers now incorporate specific modules for children with complex conditions. Another notable trend is the shift to a family-centered model of care. We explore efforts toward regionalization of care, including the development of specialized pediatric transport teams, and conclude with recommendations for a research agenda.

In resident primary care continuity clinics, at the end of each academic year, continuity of care is disrupted when patients cared for by the graduating class are redistributed to other residents. Yet, despite the recent focus on the transfers of care between resident physicians in inpatient settings, there has been minimal attention given to patient care transfers in academic ambulatory clinics. We sought to elicit the views of pediatric residents regarding year-end patient handoffs in a pediatric resident continuity clinic. Residents assigned to a continuity clinic of a large pediatric residency program completed a questionnaire regarding year-end transfers of care. Thirty-one questionnaires were completed out of a total 45 eligible residents (69% response). Eighty seven percent of residents strongly or somewhat agreed that it would be useful to receive a written sign-out for patients with complex medical or social issues, but only 35% felt it would be useful for patients with no significant issues. Residents more frequently reported having access to adequate information regarding their new patients' medical summary (53%) and care plan (47%) than patients' functional abilities (30%), social history (17%), or use of community resources (17%). When rating the importance of receiving adequate sign-out in each those domains, residents gave most importance to the medical summary (87% of residents indicating very or somewhat important) and plan of care (84%). Residents gave less importance to receiving sign-out regarding their patients' functional abilities (71%) social history (58%), and community resources (58%). Residents indicated that lack of access to adequate patient information resulted in additional work (80%), delays or omissions in needed care (56%), and disruptions in continuity of care (58%). In a single-site study, residents perceive that they lack adequate information during year-end patient transfers, resulting in potential negative consequences for patient safety and medical education.

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. Keywords Medical home * Children with special health care needs * Care coordination * Parent assessment Abbreviations CSHCN Children with special health care needs MHFI Medical Home Family Index CMHI Center for Medical Home Improvement AAP American Academy of Pediatrics, Introduction It is estimated that CSHCN make up nearly 20 % of the pediatric population in the US (or 12.6 million children nationally) and represent approximately 80 % of pediatric [...]

Developing myocardium is more dependent on glycolysis than adult myocardium, yet the effects of selectively inhibiting glycolysis versus oxidative phosphorylation on embryonic heart function have not been well characterized. Accordingly, we investigated how selective metabolic inhibition affects membrane voltage and intracellular Ca ([Ca.sub.i]) transients in embryonic mouse hearts, including their susceptibility to arrhythmias. A total of 136 isolated embryonic mouse hearts were exposed to either 1) 2-deoxyglucose (2DG; 10 mM) or iodoacetate (IAA: 0.1 mM) with 10 mM pyruvate in place of glucose to selectively inhibit glycolysis or 2) the mitochondrial uncoupler protonophore carbonyl cyanide p-(trifluoromethoxy)phenylhydrazone (FCCP: 500 nM) with 10 mM glucose present to selectively inhibit oxidative phosphorylation. Using confocal imaging, we found that mitochondrial membrane potential monitored with tetramethylrhodamine methyl ester (200 nM) remained stable with 2DG or IAA but depolarized within 5 min after exposure to FCCP. IAA and FCCP decreased heart rate, inhibited [Ca.sub.i] transient amplitude, shortened action potential duration at 80% repolarization ([APD.sub.80]). and prolonged atrioventricular conduction time to similar extents. Although 2DG decreased heart rate and [Ca.sub.i] transient amplitude, it did not significantly affect [APD.sub.80] and AV conduction time. In addition, spontaneous arrhythmias occurred in 77 of 136 embryonic hearts (57%) after exposure to IAA (28/53) or FCCP (49/83). There were no significant differences in the types or incidence of arrhythmias induced by IAA and FCCP. These data support the idea that both glycolysis and oxidative phosphorylation play critical metabolic roles in regulating cardiac function in the embryonic mouse heart. embryonic heart development; calcium transient: arrhythmias

To link to full-text access for this article, visit this link: http://dx.doi.org/10.1016/j.ahj.2005.12.016 Byline: Ruey-Kang R. Chang, Sandra Rodriguez, Maggie Lee, Thomas S. Klitzner Abstract: Little is known regarding the risk factors for early and late death after hospital discharge among pediatric patients undergoing cardiac surgery. Author Affiliation: Division of Cardiology, Department of Pediatrics, David Geffen School of Medicine at UCLA, Los Angeles, CA Article History: Received 28 July 2005; Accepted 14 December 2005 Article Note: (footnote) This work was primarily funded by the Agency for Healthcare Research and Quality (1 R03 HS13217-01). Dr Chang also received research funding from National Center for Research Resources, National Institutes of Health (1 K23 RR17041-01), and American Heart Association (0365041Y).

Objectives. To evaluate changes in the clinical management of infants with hypoplastic left heart syndrome (HLHS) over a 10-year period. Background. Orthotopic heart transplantation (OHT) and the Norwood procedure have emerged as the treatment options for HLHS over the last 2 decades. Methods. We used 1988-1997 hospital discharge data from the National Inpatient Sample dataset. Patients [less than or equal to] 30 days of age with a principal diagnosis of HLHS were identified. Clinical management included the Norwood procedure, OHT, in-hospital death without surgery, discharge home without surgery, and transfer to another hospital. Multivariate logistic regression was used to evaluate variables associated with the choice of management. Results. There were 1986 cases of HLHS with 812 in-hospital deaths, yielding a mortality rate 40.9%. The in-hospital mortality rate decreased from 54.4% in 1988 to 38.1% in 1997. The proportion of patients treated with the Norwood procedure increased from 8% in 1988 to 34% in 1997. The proportion of patients who died in the hospital without surgery decreased over time while the percentage discharged from the hospital without surgery or transferred to another hospital remained relatively unchanged. The in-hospital mortality rate was significantly lower in the OHT group compared with the Norwood group (26.2% vs 46.0%). We found no differences in gender, race, type of insurance, or home income between patients treated with the Norwood procedure compared with those who received comfort care. Patients from a later era, in the South, and in teaching hospitals were more likely to undergo the Norwood procedure. Conclusions. Between 1988 and 1997, the proportion of infants with HLHS treated with the Norwood procedure increased while the use of comfort care decreased. Gender, race/ethnicity, type of medical insurance, and home income did not correlate with treatment choices. Pediatrics 2002;110:292-298; hypoplastic left heart syndrome, Norwood procedure, heart transplant, outcomes., ABBREVIATIONS. HLHS, hypoplastic left heart syndrome; OHT, orthotopic heart transplant; NIS, National Inpatient Sample; ICD-9CM, International Classification of Diseases, Ninth Revision, Clinical Modification; OR, odds ratio; CI, confidence interval. Hypoplastic [...]

Objective. The association between high case volumes and better patient outcomes has been demonstrated for many surgical procedures and medical treatments, including surgery for children with congenital heart disease. To simulate the effects of regionalization of pediatric cardiac surgery, we assessed the impact of reducing the number of pediatric cardiac centers on surgical mortality and patient's travel distance. Methods. This study used abstracted statewide hospital discharge data from California from 1995 to 1997. Case volume and in-hospital mortality for pediatric cardiac surgeries at each hospital were calculated. All hospitals that performed [greater than or equal to] 10 pediatric cardiac surgeries in 1995 to 1997 were included in the analysis. To simulate regionalization, we "closed" the hospital with the lowest case volume and redistributed patients from this hospital to the nearest remaining hospitals. The number of in-hospital deaths was then recalculated using the original mortality rate of each remaining hospital multiplied by its new case volume. A multivariate logistic regression was conducted to determine the odds ratios of mortality of various types of surgery compared with closure of ventricular septal defect. This result was used for adjusting for the case-mix of the hospitals. Regionalization simulation analysis was repeated, and the number of deaths was recalculated using this adjustment of hospital case-mix. We also examined the increase in travel distance of patients to the hospitals as a result of the regionalization simulation. Results. In California, 6592 children underwent cardiac surgeries in 1995 to 1997 with 352 in-hospital deaths (overall mortality rate: 5.34%). A quadratic regression model demonstrated that a high surgical volume was associated with a low mortality rate. We found demarcations between low- and medium-volume hospitals at 70 cases per year and medium- and high-volume hospitals at 170 cases per year. With adjustment for hospital case-mix, we found that 41 deaths could be avoided when all patients from low-volume hospitals were referred, and 83 deaths could be avoided when all patients from low- and medium-volume hospitals were referred to high-volume hospitals (overall mortality rate decreased to 4.08%). The average travel distance for pediatric cardiac surgery was 45.4 miles, which increased by 12.7 miles when all surgeries were referred to high-volume hospitals. When only the 733 high-risk patients were referred from low- and medium-volume hospitals to high-volume hospitals, 49 deaths could be avoided, yielding an overall mortality rate of 4.60%. Conclusions. Theoretical regionalization of pediatric cardiac surgery is associated with a reduction in surgical mortality from 5.34% to 4.08% when all cases were referred to high-volume hospitals, or decrease to 4.60% when high-risk cases were referred. Although regionalization is associated with an important decrease in the number of deaths, it also increases the travel distance for patients. Additional studies on the costs and benefits of regionalization are needed to determine the best strategies to improve outcomes for children who undergo cardiac surgery. Pediatrics 2002;109:173-181; children, heart surgery, congenital heart disease, regionalization, outcome., ABBREVIATIONS. OR, odds ratio; OSHPD, Office of Statewide Health Planning and Development; ICD-9-CM, International Classification of Diseases, Ninth Revision, Clinical Modification; ASD, atrial septal defect; TAPVR, total anomalous pulmonary venous [...]

An investigation conducted on neonatal cardiac myocyte contraction in rabbits finds that the cardiac myocyte contraction is non dependent on Ca2+ entry via voltage-gated Ca2+ currents, but that Ca2+ influx via reverse Na+/Ca2+ exchanger plays an important role in supporting systolic function in the developing heart. A major portion of the Ca2+, regulating the cell contraction during depolarization to positive membrane potentials, is provided by the Ca2+ entry via reverse Na+/Ca2+ exchanger.