Kawasaki Disease Substantially Impacts Health-Related Quality of Life.

OBJECTIVE: To prospectively evaluate the acute impact of Kawasaki disease (KD) on health-related quality of life (HRQoL) and to assess deterioration in the HRQoL experienced by children with KD compared with other childhood diseases. STUDY DESIGN: We merged the Outcomes Assessment Program database obtained prospectively with the existing KD database and queried for KD admissions between 1 month and 13 years of age. HRQoL was evaluated with the parent-proxy Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core and Infant Scales. We compared the KD HRQoL results with those obtained from newly diagnosed patients with cancer and pneumonia, matched for age, sex and race. PedsQL total scores over time were assessed with ANCOVA models, adjusted for matching variables and PedsQL score prior to admission. RESULTS: We identified 89 patients with KD and compared 65 subjects with an equal number with pneumonia and with 67 subjects with newly diagnosed cancer. Patients with demonstrated lower PedsQL total score on admission and suffered a significantly greater HRQoL decline from baseline to admission than the other groups. KD diagnostic subtype (complete or incomplete) and coronary artery dilatation were not associated with HRQoL outcomes. However, non-intravenous immunoglobulin responders showed greater HRQoL decline than responders (P = .03). CONCLUSIONS: Children with KD suffer acute and significant HRQoL impairment exceeding that of children newly diagnosed with cancer. Lack of immediate treatment response may exert an additional HRQoL burden, whereas KD subtype and coronary artery dilatation do not.

Using State Administrative Data to Identify Social Complexity Risk Factors for Children.

PURPOSE: Screening for social determinants of health is challenging but critically important for optimizing child health outcomes. We aimed to test the feasibility of using an integrated state agency administrative database to identify social complexity risk factors and examined their relationship to emergency department (ED) use. METHODS: We conducted a retrospective cohort study among children younger than 18 years with Washington State Medicaid insurance coverage (N = 505,367). We linked child and parent administrative data for this cohort to identify a set of social complexity risk factors, such as poverty and parent mental illness, that have either a known or hypothesized association with suboptimal health care use. Using multivariate analyses, we examined associations of each risk factor and of number of risk factors with the rate of ED use. RESULTS: Nine of 11 identifiable social complexity risk factors were associated with a higher rate of ED use. Additionally, the rate increased as the number of risk factors increased from 0 to 5 or more, reaching approximately twice the rate when 5 or more risk factors were present in children aged younger than 5 years (incidence rate ratio = 1.92; 95% CI, 1.85-2.00) and in children aged 5 to 17 years (incidence rate ratio = 2.06; 95% CI, 1.99-2.14). CONCLUSIONS: State administrative data can be used to identify social complexity risk factors associated with higher rates of ED use among Medicaid-insured children. State agencies could give primary care medical homes a social risk flag or score to facilitate targeted screening and identification of needed resources, potentially preventing future unnecessary ED use in this vulnerable population of children.

The Impact of an Adolescent Depressive Disorders Clinical Pathway on Healthcare Utilization.

Clinical pathways are known to improve the value of health care in medical and surgical settings but have been rarely studied in the psychiatric setting. This study examined the association between level of adherence to an adolescent depressive disorders inpatient clinical pathway and length of stay (LOS), cost, and readmissions. Patients in the high adherence category had significantly longer LOS and higher costs compared to the low adherence category. There was no difference in the odds of 30-day emergency department return visits or readmissions. Understanding which care processes within the pathway are most cost-effective for improving patient-centered outcomes requires further investigation.

Caring for Children with Medical Complexity: Perspectives of Primary Care Providers.

OBJECTIVE: To describe typical care experiences and key barriers and facilitators to caring for children with medical complexity (CMC) from the perspective of community primary care providers (PCPs). STUDY DESIGN: PCPs participating in a randomized controlled trial of a care-coordination intervention for CMC were sent a 1-time cross-sectional survey that asked PCPs to (1) describe their experiences with caring for CMC; (2) identify key barriers affecting their ability to care for CMC; and (3) prioritize facilitators enhancing their ability to provide care coordination for CMC. PCP and practice demographics also were collected. RESULTS: One hundred thirteen of 155 PCPs sent the survey responded fully (completion rate = 73%). PCPs endorsed that medical characteristics such as polypharmacy (88%), multiorgan system involvement (84%), and rare/unfamiliar diagnoses (83%) negatively affected care. Caregivers with high needs (88%), limited time with patients and caregivers (81%), and having a large number of specialists involved in care (79%) were also frequently cited. Most commonly endorsed strategies to improve care coordination included more time with patients/caregivers (84%), summative action plans (83%), and facilitated communication (eg, e-mail, phone meetings) with specialists (83%). CONCLUSIONS: Community PCPs prioritized more time with patients and their families, better communication with specialists, and summative action plans to improve care coordination for this vulnerable population. Although this study evaluated perceptions rather than actual performance, it provides insights to improve understanding of which barriers and facilitators ideally might be targeted first for care delivery redesign.

Patient Characteristics Associated with Differences in Admission Frequency for Diabetic Ketoacidosis in United States Children's Hospitals.

OBJECTIVES: To determine across and within hospital differences in the predictors of 365-day admission frequency for diabetic ketoacidosis (DKA) in children at US children's hospitals. STUDY DESIGN: Multicenter retrospective cohort analysis of 12,449 children 2-18 years of age with a diagnosis of DKA in 42 US children's hospitals between 2004 and 2012. The main outcome of interest was the maximum number of DKA admissions experienced by each child within any 365-day interval during a 5-year follow-up period. The association between patient characteristics and the maximum number of DKA admissions within a 365-day interval was examined across and within hospitals. RESULTS: In the sample, 28.3% of patients admitted for DKA experienced at least 1 additional DKA admission within the following 365 days. Across hospitals, patient characteristics associated with increasing DKA admission frequency were public insurance (OR 1.97, 95% CI 1.71-2.26), non-Hispanic black race (OR 2.40, 95% CI 2.02-2.85), age ≥ 12 (OR 1.98, 95% CI 1.7-2.32), female sex (OR 1.41, 95% CI 1.29-1.55), and mental health comorbidity (OR 1.36, 95% CI 1.13-1.62). Within hospitals, non-Hispanic black race was associated with higher odds of 365-day admission in 59% of hospitals, and public insurance was associated with higher odds in 56% of hospitals. Older age, female sex, and mental health comorbidity were associated with higher odds of 365-day admission in 42%, 29%, and 15% of hospitals, respectively. CONCLUSIONS: Across children's hospitals, certain patient characteristics are associated with more frequent DKA admissions. However, these factors are not associated with increased DKA admission frequency for all hospitals.

Construct Validity and Responsiveness of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales and Infant Scales in the PICU.

OBJECTIVES: To assess the construct validity and the responsiveness of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales and Infant Scales in the medical-surgical (PICU) and cardiac PICU. DESIGN/SETTING/PARTICIPANTS: Prospective cohort study of 367 inpatients admitted either to the PICU or the cardiac ICU at Seattle Children's Hospital from January 2012 to June 2013. Parent/caregiver and child (≥ 8 yr old, developmentally appropriate, and critical illness resolved) Pediatric Quality of Life Inventory scores were obtained within 24 hours of PICU/cardiac ICU discharge and subsequently at 4-12 weeks following hospital discharge. Of the 491 eligible participants invited to participate, 367 (74.7% response rate) completed the Pediatric Quality of Life Inventory survey at ICU discharge, and of these, 263 (71.7% follow-up response rate) completed the follow-up survey 4-12 weeks after hospital discharge. MEASUREMENTS AND MAIN RESULTS: Responsiveness was assessed by calculating improvement scores (difference between follow-up and ICU discharge scores, Δ Pediatric Quality of Life Inventory). Construct validity was examined by comparing mean improvement scores for known groups differing by medical complexity. At follow-up, [INCREMENT] Pediatric Quality of Life Inventory scores were as follows (mean ± SD): physical domain, 34.8 ± 32.0; and psychosocial domain, 23.1 ± 23.5. Patients with complex chronic or noncomplex chronic disease had physical functioning improvement scores that were 17.4 points (95% CI, -28.3 to -6.5; p < 0.001) and 19.5 points (95% CI, -30.4 to -8.5; p < 0.002) lower than children with no chronic illness, respectively. Patients with complex chronic disease exhibited psychosocial improvement scores that were 9.6 points (95% CI, -18.4 to -0.8; p < 0.033) lower than patients without chronic disease. Patients with noncomplex chronic disease had similar psychosocial improvement scores when compared with patients without chronic disease. CONCLUSIONS: As a measure of health-related quality of live, Pediatric Quality of Life Inventory demonstrated responsiveness and construct validity in a broad population of critically ill children. This measure represents a patient-centered clinically meaningful patient-or-parent-reported outcome measure for pediatric research assessing the clinical effectiveness of PICU/cardiac ICU interventions. When using health-related quality of life recovery as an outcome measure to assess clinical effectiveness in the PICU/cardiac ICU setting, measuring and controlling for the level of medical complexity is important in order to understand the true impact of clinical interventions.

Racial disparities in failure-to-rescue among children undergoing congenital heart surgery.

OBJECTIVE: To determine if racial/ethnic disparities exist among children undergoing congenital heart surgery, using failure-to-rescue (FTR) as a measure of hospital-based quality. STUDY DESIGN: This is a retrospective, repeated cross-sectional analysis using admissions from the 2003, 2006, and 2009 Kids' Inpatient Database. All pediatric admissions (≤ 18 years) with a Risk Adjustment for Congenital Heart Surgery procedure were included. Logistic regression models examining complications, FTR, and overall mortality were constructed. RESULTS: Hispanic ethnicity (OR 1.13, 95% CI 1.01-1.26) was associated with increased odds of experiencing a complication when compared with white race. However, black race (OR 1.66, 95% CI 1.33-2.07) and other race/ethnicity (OR 1.40, 95% CI 1.10-1.79) were risk factors for FTR. Although Hispanic ethnicity was associated with increased odds of experiencing a complication, it was not associated with FTR. In hospital fixed-effects models, black race and other race/ethnicity remained as "within hospital" risk factors for FTR. CONCLUSIONS: Black children and children of other race/ethnicity had higher rates of mortality after experiencing a complication. This suggests that racial disparities may exist in hospital-based cardiac care or response to care.

The Influence of Provider Communication Behaviors on Parental Vaccine Acceptance and Visit Experience.

OBJECTIVES: We investigated how provider vaccine communication behaviors influence parental vaccination acceptance and visit experience. METHODS: In a cross-sectional observational study, we videotaped provider-parent vaccine discussions (n = 111). We coded visits for the format providers used for initiating the vaccine discussion (participatory vs presumptive), parental verbal resistance to vaccines after provider initiation (yes vs no), and provider pursuit of recommendations in the face of parental resistance (pursuit vs mitigated or no pursuit). Main outcomes were parental verbal acceptance of recommended vaccines at visit's end (all vs ≥ 1 refusal) and parental visit experience (highly vs lower rated). RESULTS: In multivariable models, participatory (vs presumptive) initiation formats were associated with decreased odds of accepting all vaccines at visit's end (adjusted odds ratio [AOR] = 0.04; 95% confidence interval [CI] = 0.01, 0.15) and increased odds of a highly rated visit experience (AOR = 17.3; 95% CI = 1.5, 200.3). CONCLUSIONS: In the context of 2 general communication formats used by providers to initiate vaccine discussions, there appears to be an inverse relationship between parental acceptance of vaccines and visit experience. Further exploration of this inverse relationship in longitudinal studies is needed.

Communication practices and antibiotic use for acute respiratory tract infections in children.

PURPOSE: This study examined relationships between provider communication practices, antibiotic prescribing, and parent care ratings during pediatric visits for acute respiratory tract infection (ARTI). METHODS: A cross-sectional study was conducted of 1,285 pediatric visits motivated by ARTI symptoms. Children were seen by 1 of 28 pediatric providers representing 10 practices in Seattle, Washington, between December 2007 and April 2009. Providers completed post-visit surveys reporting on children's presenting symptoms, physical examination findings, assigned diagnoses, and treatments prescribed. Parents completed post-visit surveys reporting on provider communication practices and care ratings for the visit. Multivariate analyses identified key predictors of prescribing antibiotics for ARTI and of parent visit ratings. RESULTS: Suggesting actions parents could take to reduce their child's symptoms (providing positive treatment recommendations) was associated with decreased risk of antibiotic prescribing whether done alone or in combination with negative treatment recommendations (ruling out the need for antibiotics) [adjusted risk ratio (aRR) 0.48; 95% CI, 0.24-0.95; and aRR 0.15; 95% CI, 0.06-0.40, respectively]. Parents receiving combined positive and negative treatment recommendations were more likely to give the highest possible visit rating (aRR 1.16; 95% CI, 1.01-1.34). CONCLUSION: Combined use of positive and negative treatment recommendations may reduce the risk of antibiotic prescribing for children with viral ARTIs and at the same time improve visit ratings. With the growing threat of antibiotic resistance at the community and individual level, these communication techniques may assist frontline providers in helping to address this pervasive public health problem.

Rehabilitation following pediatric traumatic brain injury: variability in adherence to psychosocial quality-of-care indicators.

OBJECTIVE: To examine variations in processes of pediatric inpatient rehabilitation care related to family-centered care, management of neurobehavioral and psychosocial needs, and community reintegration after traumatic brain injury. SETTING: Nine acute rehabilitation facilities from geographically diverse areas of the United States. PARTICIPANTS: A total of 174 children with traumatic brain injury. DESIGN: Retrospective chart review. MAIN MEASURES: Adherence to care indicators (the number of times recommended care was delivered or attempted divided by the number of times care was indicated). RESULTS: Across facilities, adherence rates (adjusted for difficulty of delivery) ranged from 33.6% to 73.1% (95% confidence interval, 13.4-53.9, 58.7-87.4) for family-centered processes, 21.3% to 82.5% (95% confidence interval, 6.6-36.1, 67.6-97.4) for neurobehavioral and psychosocial processes, and 22.7% to 80.3% (95% confidence interval, 5.3-40.1, 68.1-92.5) for community integration processes. Within facilities, standard deviations for adherence rates were large (24.3-34.9, family-centered domain; 22.6-34.2, neurobehavioral and psychosocial domain; and 21.6-40.5, community reintegration domain). CONCLUSION: The current state of acute rehabilitation care for children with traumatic brain injury is variable across different quality-of-care indicators addressing neurobehavioral and psychosocial needs and facilitating community reintegration of the patient and the family. Individual rehabilitation facilities demonstrate inconsistent adherence to different indicators and inconsistent performance across different care domains.

Individualized plans of care to improve outcomes among children and adults with chronic illness: a systematic review.

BACKGROUND: Adults and children with chronic illness often require services from multiple providers. Individualized plans of care (IPCs) are sometimes developed to improve care coordination. However, their association with improved outcomes is unknown. METHODS: We searched literature published between January 2001 and October 2011, using Medline, CINAHL, EMBASE, PsychINFO, and bibliographic review. Eligible studies involved an IPC with input from the patient and/or family of individuals with chronic illness, evaluated outcomes, and were conducted in the United States. We assessed evidence quality using Oxford Centre for Evidence-Based Medicine criteria. RESULTS: 15 studies met inclusion criteria. Studies were heterogeneous regarding populations and outcomes examined and were generally low quality. Most described IPC use within a multifaceted care coordination intervention. The strongest evidence links IPC use and symptom improvement in depressed adults; the weakest evidence exists for outcomes in children. Vague descriptions of the IPCs' limited analysis. CONCLUSIONS: Current evidence supporting an association between IPC use and improved outcomes, particularly among children, is sparse. Well-designed evaluations of clearly described IPCs are needed to examine who should be involved in their development, what they should include, and how often they should be updated to improve outcomes of care for this vulnerable population.

Pilot Evaluation of the Family Bridge Program: A Communication- and Culture-Focused Inpatient Patient Navigation Program.

OBJECTIVE: Children with low income and minority race and ethnicity have worse hospital outcomes due partly to systemic and interpersonal racism causing communication and system barriers. We tested the feasibility and acceptability of a novel inpatient communication-focused navigation program. METHODS: Multilingual design workshops with parents, providers, and staff created the Family Bridge Program. Delivered by a trained navigator, it included 1) hospital orientation; 2) social needs screening and response; 3) communication preference assessment; 4) communication coaching; 5) emotional support; and 6) a post-discharge phone call. We enrolled families of hospitalized children with public or no insurance, minority race or ethnicity, and preferred language of English, Spanish, or Somali in a single-arm trial. We surveyed parents at enrollment and 2 to 4 weeks post-discharge, and providers 2 to 3 days post-discharge. Survey measures were analyzed with paired t tests. RESULTS: Of 60 families enrolled, 57 (95%) completed the follow-up survey. Most parents were born outside the United States (60%) with a high school degree or less (60%). Also, 63% preferred English, 33% Spanish, and 3% Somali. The program was feasible: families received an average of 5.3 of 6 components; all received >2. Most caregivers (92%) and providers (81% [30/37]) were "very satisfied." Parent-reported system navigation improved from enrollment to follow-up (+8.2 [95% confidence interval 2.9, 13.6], P = .003; scale 0-100). Spanish-speaking parents reported decreased skills-related barriers (-18.4 [95% confidence interval -1.8, -34.9], P = .03; scale 0-100). CONCLUSIONS: The Family Bridge Program was feasible, acceptable, and may have potential for overcoming barriers for hospitalized children at risk for disparities.

Variations in the quality of inpatient rehabilitation care to facilitate school re-entry and cognitive and communication function for children with TBI.

OBJECTIVE: To examine variations in processes of paediatric inpatient rehabilitation care related to school re-entry and management of cognitive and communication impairments after traumatic brain injury. DESIGN: Retrospective cohort study. METHODS: Adherence to care processes recommended for children (aged 0-17) with moderate-to-severe traumatic brain injury and admitted for inpatient rehabilitation was assessed. Quality-of-care indicators for processes supporting school re-entry and cognitive and communication rehabilitation were applied to measure variations in care delivered to 174 children across nine facilities using medical record review. MAIN OUTCOMES AND RESULTS: Adherence rates (the number of times recommended care was delivered or attempted divided by the number of times care was indicated) were calculated, revealing substantial variations in care within and between facilities. Overall, children received 51.3% (95% CI = 31.9-70.7) and 72.3% (95% CI = 61.1-83.5), of the care recommended for school re-entry and cognitive and communication rehabilitation, respectively. CONCLUSION: Substantial variations exist in the delivery of paediatric inpatient rehabilitation care processes for managing school re-entry and cognitive and communication impairments after traumatic brain injury. Measures of association of these care processes with patient outcomes are necessary. Reduction in this variation is essential to improving quality of care.

Asthma outcomes: composite scores of asthma control.

BACKGROUND: Current asthma guidelines recommend assessing the level of a patient's asthma control. Consequently, there is increasing use of asthma control as an outcome measure in clinical research studies. Several composite assessment instruments have been developed to measure asthma control. OBJECTIVE: National Institutes of Health institutes and federal agencies convened an expert group to propose the most appropriate standardized composite score of asthma control instruments to be used in future asthma studies. METHODS: We conducted a comprehensive search of PubMed using both the National Library of Medicine's Medical Subject Headings and key terms to identify studies that attempted to develop and/or test composite score instruments for asthma control. We classified instruments as core (required in future studies), supplemental (used according to study aims and standardized), or emerging (requiring validation and standardization). This work was discussed at a National Institutes of Health-organized workshop convened in March 2010 and finalized in September 2011. RESULTS: We identified 17 composite score instruments with published validation information; all had comparable content. Eight instruments demonstrated responsiveness over time; 3 demonstrated responsiveness to treatment. A minimal clinically important difference has been established for 3 instruments. The instruments have demographic limitations; some are proprietary, and their use could be limited by cost. CONCLUSION: Two asthma composite score instruments are sufficiently validated for use in adult populations, but additional research is necessary to validate their use in nonwhite populations. Gaps also exist in validating instruments for pediatric populations.

Pediatric Respiratory Illnesses: An Update on Achievable Benchmarks of Care.

BACKGROUND AND OBJECTIVES: Pediatric respiratory illnesses (PRI): asthma, bronchiolitis, pneumonia, croup, and influenza are leading causes of pediatric hospitalizations, and emergency department (ED) visits in the United States. There is a lack of standardized measures to assess the quality of hospital care delivered for these conditions. We aimed to develop a measure set for automated data extraction from administrative data sets and evaluate its performance including updated achievable benchmarks of care (ABC). METHODS: A multidisciplinary subject-matter experts team selected quality measures from multiple sources. The measure set was applied to the Public Health Information System database (Children's Hospital Association, Lenexa, KS) to cohorts of ED visits and hospitalizations from 2017 to 2019. ABC for pertinent measures and performance gaps of mean values from the ABC were estimated. ABC were compared with previous reports. RESULTS: The measure set: PRI report includes a total of 94 quality measures. The study cohort included 984 337 episodes of care, and 82.3% were discharged from the ED. Measures with low performance included bronchodilators (19.7%) and chest x-rays (14.4%) for bronchiolitis in the ED. These indicators were (34.6%) and (29.5%) in the hospitalized cohort. In pneumonia, there was a 57.3% use of narrow spectrum antibiotics. In general, compared with previous reports, there was improvement toward optimal performance for the ABCs. CONCLUSIONS: The PRI report provides performance data including ABC and identifies performance gaps in the quality of care for common respiratory illnesses. Future directions include examining health inequities, and understanding and addressing the effects of the coronavirus disease 2019 pandemic on care quality.

Characteristics of Adolescents Who Use Secure Messaging on a Health System's Patient Portal.

OBJECTIVES: To determine adolescent characteristics associated with patient portal secure messaging use within a health system. METHODS: This study analyzed monthly data from individuals aged 13 to 17 who met study eligibility criteria from 2019 to 2021. The primary outcome was any secure messages sent from an adolescent's account during each observed month. Unadjusted and adjusted associations between adolescent characteristics and secure messaging use were assessed using generalized estimating equations with log link and binomial variance. RESULTS: Of 667 678 observed months, 50.8% occurred among males who were not transgender, 51.5% among those identifying as non-Hispanic white, and 83.3% among the privately insured. The adjusted relative risks of secure messaging use were significantly higher for individuals with female sex and transgender identities (female sex, not transgender: adjusted relative risk [aRR] 1.41, 95% confidence interval [CI] 1.31-1.52; male sex, transgender: aRR 2.39, CI 1.98-2.90, female sex, transgender: aRR 3.01, 95% CI 2.63-3.46; referent male sex, not transgender), those with prior portal use (aRR 22.06, 95% CI 20.48-23.77; referent no use) and those with a recent preventive care visit (aRR 1.09, 95% CI 1.02-1.16; referent no recent visits). The adjusted relative risks of portal secure messaging use were significantly lower among those with public insurance (aRR 0.58, 95% CI 0.50-0.67; referent private). CONCLUSIONS: Adolescents who sent patient portal secure messages differed from those who did not. Interventions to encourage secure messaging use may require tailoring based on patient characteristics.

Improving the Quality of Written Discharge Instructions: A Multisite Collaborative Project.

BACKGROUND AND OBJECTIVES: Written discharge instructions help to bridge hospital-to-home transitions for patients and families, though substantial variation in discharge instruction quality exists. We aimed to assess the association between participation in an Institute for Healthcare Improvement Virtual Breakthrough Series collaborative and the quality of pediatric written discharge instructions across 8 US hospitals. METHODS: We conducted a multicenter, interrupted time-series analysis of a medical records-based quality measure focused on written discharge instruction content (0-100 scale, higher scores reflect better quality). Data were from random samples of pediatric patients (N = 5739) discharged from participating hospitals between September 2015 and August 2016, and between December 2017 and January 2020. These periods consisted of 3 phases: 1. a 14-month precollaborative phase; 2. a 12-month quality improvement collaborative phase when hospitals implemented multiple rapid cycle tests of change and shared improvement strategies; and 3. a 12-month postcollaborative phase. Interrupted time-series models assessed the association between study phase and measure performance over time, stratified by baseline hospital performance, adjusting for seasonality and hospital fixed effects. RESULTS: Among hospitals with high baseline performance, measure scores increased during the quality improvement collaborative phase beyond the expected precollaborative trend (+0.7 points/month; 95% confidence interval, 0.4-1.0; P < .001). Among hospitals with low baseline performance, measure scores increased but at a lower rate than the expected precollaborative trend (-0.5 points/month; 95% confidence interval, -0.8 to -0.2; P < .01). CONCLUSIONS: Participation in this 8-hospital Institute for Healthcare Improvement Virtual Breakthrough Series collaborative was associated with improvement in the quality of written discharge instructions beyond precollaborative trends only for hospitals with high baseline performance.

Quality of care indicators for the rehabilitation of children with traumatic brain injury.

OBJECTIVE: To develop measurement tools for assessing compliance with identifiable processes of inpatient care for children with traumatic brain injury (TBI) that are reliable, valid, and amenable to implementation. DESIGN: Literature review and expert panel using the RAND/UCLA Appropriateness Method and a Delphi technique. SETTING: Not applicable. PARTICIPANTS: Children with TBI. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Quality of care indicators. RESULTS: A total of 119 indicators were developed across the domains of general management; family-centered care; cognitive-communication, speech, language, and swallowing impairments; gross and fine motor skill impairments; neuropsychologic, social, and behavioral impairments; school reentry; and community integration. There was a high degree of agreement on these indicators as valid and feasible quality measures for children with TBI. CONCLUSIONS: These indicators are an important step toward building a better base of evidence about the effectiveness and efficiency of the components of acute inpatient rehabilitation for pediatric patients with TBI.

Variation in adherence to new quality-of-care indicators for the acute rehabilitation of children with traumatic brain injury.

OBJECTIVE: To determine variations in care provided by 9 inpatient rehabilitation units for children with traumatic brain injury (TBI) using newly developed quality indicators. DESIGN: Retrospective cohort study. SETTING: Nine inpatient rehabilitation units. PARTICIPANTS: Children (N=174; age range, 0-17y) admitted for the inpatient rehabilitation of moderate to severe TBI. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Adherence to 119 newly developed quality-of-care indicators in 7 different domains: general care, family-centered care, cognitive-communication, motor, neuropsychological, school, and community integration. RESULTS: There was substantial variation both within and between institutions in the percentage of patients receiving recommended care in the 7 domains. The lowest scores were found for the school domain. Only 5 institutions scored above 50% for all quality indicators, and only 1 institution scored above 70% overall. Greater adherence to quality indicators was found for facilities with a higher proportion of therapists with pediatric training and for facilities that only admitted children. Patient volume was not associated with adherence to quality indicators. CONCLUSIONS: The results indicate a tremendous variability and opportunity for improvement in the care of children with TBI.

Quality of care indicators for the structure and organization of inpatient rehabilitation care of children with traumatic brain injury.

OBJECTIVES: To develop evidence-based and expert-driven quality indicators for measuring variations in the structure and organization of acute inpatient rehabilitation for children after traumatic brain injury (TBI) and to survey centers across the United States to determine the degree of variation in care. DESIGN: Quality indicators were developed using the RAND/UCLA modified Delphi method. Adherence to these indicators was determined from a survey of rehabilitation facilities. SETTING: Inpatient rehabilitation units in the United States. PARTICIPANTS: A sample of rehabilitation programs identified using data from the National Association of Children's Hospitals and Related Institutions, Uniform Data System for Medical Rehabilitation, and the Commission on Accreditation of Rehabilitation Facilities yielded 74 inpatient units treating children with TBI. Survey respondents comprised 31 pediatric and 28 all age units. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Variations in structure and organization of care among institutions providing acute inpatient rehabilitation for children with TBI. RESULTS: Twelve indicators were developed. Pediatric inpatient rehabilitation units and units with higher volumes of children with TBI were more likely to have: a census of at least 1 child admitted with a TBI for at least 90% of the time; adequate specialized equipment; a classroom; a pediatric subspecialty trained medical director; and more than 75% of therapists with pediatric training. CONCLUSIONS: There were clinically and statistically significant variations in the structure and organization of acute pediatric rehabilitation based on the pediatric focus of the unit and volume of children with TBI.