Barriers to and facilitators of a just-in-time adaptive intervention for respiratory illness in cerebral palsy: a qualitative study.

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.

Caregiving and Confidence to Avoid Hospitalization for Children with Medical Complexity.

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.

Linking Parent Confidence and Hospitalization through Mobile Health: A Multisite Pilot Study.

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.

Key Population Health Outcomes for Children with Medical Complexity: A Systematic Review.

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.

A Healthy Life for a Child With Medical Complexity: 10 Domains for Conceptualizing Health.

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.

Complex Care Hospital Use and Postdischarge Coaching: A Randomized Controlled Trial.

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.

The Medical Home at 50: Are Children With Medical Complexity the Key to Proving Its Value?

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.

Experts' Perspectives Toward a Population Health Approach for Children With Medical Complexity.

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.

Strategies to Reduce Hospitalizations of Children With Medical Complexity Through Complex Care: Expert Perspectives.

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.

Discharge Handoff Communication and Pediatric Readmissions.

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.

How Avoidable are Hospitalizations for Children With Medical Complexity? Understanding Parent Perspectives.

OBJECTIVE: Children with medical complexity (CMC) are a small group that utilizes large amounts of health care resources. Although parents are the primary healthcare decision-makers for their children, little is known from their perspective about why CMC are hospitalized. We sought to understand what parents think about factors leading to hospitalization and whether any recent hospitalizations might have been avoidable. METHODS: We conducted qualitative, semistructured interviews with 35 parents of hospitalized CMC who receive care in the Pediatric Medical Home Program, a complex care program at University of California, Los Angeles. Interviews were conducted in English and in Spanish, audio-recorded, transcribed and translated, then coded in ATLAS.ti (Scientific Software Development Gmbh, Berlin, Germany) for qualitative analysis. We sorted qualitative codes into groups with shared concepts, to generate emergent themes. RESULTS: Parents described their experiences leading up to their children's hospitalization, but no one suggested that the hospitalization was potentially avoidable. Most parents perceived their children as having higher susceptibility because of underlying conditions, perceived the symptoms they observed as high-risk, and described seeking emergent care only when they no longer were comfortable at home. Decisions about where to seek care were influenced by health care system factors such as accessibility and continuity of care. Most parents expressed a desire to learn more about their children's conditions and how best to care for them at home. CONCLUSIONS: Parents of CMC believe that hospitalizations are largely unavoidable because of higher susceptibility and higher risk. Increasing parents' self-efficacy in caring for children at home might influence their decisions to seek emergent care.

Medical Complexity among Children with Special Health Care Needs: A Two-Dimensional View.

OBJECTIVE: To identify subgroups of U.S. children with special health care needs (CSHCN) and characterize key outcomes. DATA SOURCE: Secondary analysis of 2009-2010 National Survey of CSHCN. STUDY DESIGN: Latent 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 FINDINGS: LCA 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 < .001) and hospitalization odds (AOR: 12.0, p < .001) and lowest odds of a medical home (AOR: 0.17, p < .001). CSHCN in Class 3, despite experiencing more shared decision making and medical home attributes, had more ED visits and missed school than CSHCN in Class 2 (p < .001); the latter, however, experienced more cost-related difficulties, care delays, and parents having to stop work (p < .001). CONCLUSIONS: Recognizing distinct impacts of cognitive and mental health impairments and health care delivery needs on CSHCN outcomes may better direct future intervention efforts.

The Medical Home and Hospital Readmissions.

BACKGROUND AND OBJECTIVE: Despite considerable attention, little is known about the degree to which primary care medical homes influence early postdischarge utilization. We sought to test the hypothesis that patients with medical homes are less likely to have early postdischarge hospital or emergency department (ED) encounters. METHODS: This prospective cohort study enrolled randomly selected patients during an acute hospitalization at a children's hospital during 2012 to 2014. Demographic and clinical data were abstracted from administrative sources and caregiver questionnaires on admission through 30 days postdischarge. Medical home experience was assessed by using Maternal and Child Health Bureau definitions. Primary outcomes were 30-day unplanned readmission and 7-day ED visits to any hospital. Logistic regression explored relationships between outcomes and medical home experiences. RESULTS: We followed 701 patients, 97% with complete data. Thirty-day unplanned readmission and 7-day ED revisit rates were 12.4% and 5.6%, respectively. More than 65% did not have a medical home. In adjusted models, those with medical home component "having a usual source of sick and well care" had fewer readmissions than those without (adjusted odds ratio 0.54, 95% confidence interval 0.30-0.96). Readmissions were higher among those with less parent confidence in avoiding a readmission, subspecialist primary care providers, longer length of index stay, and more hospitalizations in the past year. ED visits were associated with lack of parent confidence but not medical home components. CONCLUSIONS: Lacking a usual source for care was associated with readmissions. Lack of parent confidence was associated with readmissions and ED visits. This information may be used to target interventions or identify high-risk patients before discharge.

Impact of prenatal diagnosis in survivors of initial palliation of single ventricle heart disease: analysis of the National Pediatric Cardiology Quality Improvement Collaborative database.

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.

Preventing hospitalizations in children with medical complexity: a systematic review.

BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) account for disproportionately high hospital use, and it is unknown if hospitalizations may be prevented. Our objective was to summarize evidence from (1) studies characterizing potentially preventable hospitalizations in CMC and (2) interventions aiming to reduce such hospitalizations. METHODS: Our data sources include Medline, Cochrane Central Register of Controlled Trials, Web of Science, and Cumulative Index to Nursing and Allied Health Literature databases from their originations, and hand search of article bibliographies. Observational studies (n = 13) characterized potentially preventable hospitalizations, and experimental studies (n = 4) evaluated the efficacy of interventions to reduce them. Data were extracted on patient and family characteristics, medical complexity and preventable hospitalization indicators, hospitalization rates, costs, and days. Results of interventions were summarized by their effect on changes in hospital use. RESULTS: Preventable hospitalizations were measured in 3 ways: ambulatory care sensitive conditions, readmissions, or investigator-defined criteria. Postsurgical patients, those with neurologic disorders, and those with medical devices had higher preventable hospitalization rates, as did those with public insurance and nonwhite race/ethnicity. Passive smoke exposure, nonadherence to medications, and lack of follow-up after discharge were additional risks. Hospitalizations for ambulatory care sensitive conditions were less common in more complex patients. Patients receiving home visits, care coordination, chronic care-management, and continuity across settings had fewer preventable hospitalizations. CONCLUSIONS: There were a limited number of published studies. Measures for CMC and preventable hospitalizations were heterogeneous. Risk of bias was moderate due primarily to limited controlled experimental designs. Reductions in hospital use among CMC might be possible. Strategies should target primary drivers of preventable hospitalizations.

Use of a learning network to improve variation in interstage weight gain after the Norwood operation.

BACKGROUND: Growth failure is common in infants with single ventricle. This study evaluated the use of a learning network, the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC), to spread optimized nutritional practices and improve infant growth. METHODS: A previously identified Nutritional Bundle was spread among NPC-QIC sites. PRIMARY OUTCOME: interstage weight-for-age z-score change (ΔWAZ) between discharge from stage 1 palliation (S1) and stage 2 surgical palliation (S2). Variation among sites in interstage ΔWAZ was evaluated before (Period 1) and after (Period 2) spread of Nutritional Bundle. We performed an analysis of NPC-QIC registry infants presenting for S2 at sites previously shown to have significant variation in interstage patient growth. RESULTS: Four hundred seven infants from 15 sites underwent S2 between 2008 and 2013: 158 in Period 1 (December 2008-December 2010) and 249 in Period 2 (December 2010-April 2013). Median age at S2 was 4.9 months (2.6-12.8) with no difference between periods. There was significant variation in interstage ΔWAZ among sites in Period 1 (P = .01) but not in Period 2 (P = .39). More patients had an interstage ΔWAZ <0 in Period 1 (43%) than Period 2 (32%) (P = .03). In Period 1, the median interstage ΔWAZ was <0 in six sites while in Period 2 no site had median interstage ΔWAZ <0. Sites with the worst patient growth in Period 1 had marked improvement in Period 2 (P = .02, .06, and .06, respectively). CONCLUSIONS: Spread of optimal nutritional practices led to decreased variation in interstage growth with most improvement observed at sites with the worst baseline growth outcomes.

Predictors of prolonged length of intensive care unit stay after stage I palliation: a report from the National Pediatric Cardiology Quality Improvement Collaborative.

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.

Predictors of 30-day readmission and association with primary care follow-up plans.

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.

Effects of a medical home program for children with special health care needs on parental perceptions of care in an ethnically diverse patient population.

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.