Long-Term Impact of Hospitalization for Kawasaki Disease on Health-Related Quality of Life.

OBJECTIVE: To prospectively evaluate the long-term impact of Kawasaki disease (KD) hospitalization on health-related quality of life (HRQoL). METHODS: We merged the Outcomes Assessment Program and KD databases and queried for KD admissions between 1 month and 18 years of age. Patients with a diagnosis of community-acquired pneumonia were included as a comparison group. HRQoL was evaluated with the parent proxy Pediatric Quality of Life Inventory (PedsQL). Long-term follow-up PedsQL surveys were performed at least 1 year after initial diagnosis and hospitalization. Results for the entire cohort adjusted for significant differences were calculated. Propensity score-matched cohorts were constructed from the unmatched cohorts of patients with long-term survey responses. Subgroup analysis for the KD group was performed. RESULTS: Patients with KD (n = 61) versus pneumonia (n = 80) had a lower PedsQL total score on admission and experienced a significantly greater HRQoL decline from baseline to admission. At long-term follow-up, no difference occurred in HRQoL between patients with KD and pneumonia, and 89% of patients with KD reached their baseline PedsQL scores. KD diagnostic subtype, coronary artery dilatation, and need for longer follow-up were not associated with HRQoL outcomes at any time point. Intravenous immunoglobulin nonresponders demonstrated lower HRQoL at admission, which did not persist at follow-up. CONCLUSIONS: Children with KD experience acute and significant HRQoL impairment exceeding that of children with newly diagnosed pneumonia, but the scores return to baseline at long-term follow-up. The recoveries at short- and long-term intervals are similar to patients with pneumonia.

Associations Between Health Care Professional Communication Practices and Influenza Vaccination of Hospitalized Children.

BACKGROUND: Health care professionals (HCPs) (eg, nurses, doctors) play a key role in vaccine uptake. Few studies describe HCP influenza vaccine communication with parents of hospitalized children. METHODS: This study included English- and Spanish-speaking parents of influenza vaccine-eligible children hospitalized at a tertiary care pediatric hospital between October 2018 and May 2019. A survey was completed online or via telephone 2 to 15 weeks (median 4 weeks) after discharge. It examined parental intent to vaccinate their child during hospitalization and parent-reported inpatient HCP communication practices (eg, vaccine recommendation strength, format for initiating the recommendation). Multivariable logistic regression examined the associations between HCP communication practices and influenza vaccination during hospitalization, adjusting for demographic, clinical, and visit characteristics. RESULTS: Parents (n = 194; 63.0% response rate) were mostly white (66.8%) and English-speaking (97.4%). Their children were primarily 5 through 17 years (67.0%) with chronic disease (68.6%); 24.7% were vaccinated before discharge. Most parents initially had no plan (55.6%) or planned to decline (31.1%) influenza vaccine for their child during hospitalization. Of these parents, 22.2% decided to accept the vaccine, 66.7% citing a HCP conversation as the main reason for changing their mind. Overall, 75.3% recalled a HCP conversation about influenza vaccination. Of these parents, 61.0% reported a HCP recommendation (53.8% described it as "very strong"; 11.1% noted a presumptive initiation format). A parent-reported HCP conversation (adjusted odds ratio [AOR] 5.23, 95% confidence interval [CI] 1.64-16.68) and recommendation (AOR 5.59, 95% CI 2.01-15.51) were associated with influenza vaccination during hospitalization. CONCLUSION: This study highlights the importance of discussing and recommending influenza vaccination with parents of hospitalized children.

Influenza-Related Knowledge, Beliefs, and Experiences Among Caregivers of Hospitalized Children.

OBJECTIVE: Caregivers frequently decline influenza vaccine for their hospitalized child. In this study, we aimed to examine factors impacting their influenza vaccine decision-making. METHODS: We conducted a cross-sectional survey study of English- and Spanish-speaking caregivers of children hospitalized at a tertiary care pediatric hospital between November 2017 and April 2018. The survey assessed influenza-related knowledge, beliefs, experiences, and vaccine hesitancy. Multivariable logistic regression examined associations between survey responses and child influenza vaccination status at admission (already vaccinated versus not yet vaccinated this season) and, among caregivers with vaccine-eligible children, influenza vaccine acceptance (versus declination) for their child during hospitalization. RESULTS: Caregivers (N =522; 88.9% response rate) were mostly non-Hispanic white (66.9%) and English-speaking (97.7%). At admission, 63.2% of children were already vaccinated this season. The caregiver view that influenza vaccination is important for their child's health was the strongest positive predictor of having an already vaccinated child (adjusted odds ratio [aOR]: 3.16; 95% confidence interval [CI]: 2.46-4.05); vaccine hesitancy was the strongest negative predictor (aOR: 0.61; 95% CI: 0.50-0.75). Among caregivers with vaccine-eligible children, 30.3% accepted influenza vaccine for their hospitalized child. Their belief regarding the child health benefits of influenza vaccination was associated with vaccine acceptance during hospitalization (aOR: 6.87; 95% CI: 3.38-13.96). Caregiver vaccine hesitancy and agreement that children with mild illness should delay vaccination negatively impacted vaccine acceptance (aOR: 0.39; 95% CI: 0.25-0.62; aOR: 0.33; 95% CI: 0.20-0.56, respectively). CONCLUSIONS: We identified key factors impacting influenza vaccine decision-making among caregivers of hospitalized children, a critical step to improving uptake in this population.

Satisfaction With Care Coordination for Families of Children With Disabilities.

INTRODUCTION: Children with disabilities have significant health care needs, and receipt of care coordinator services may reduce caregiver burdens. The present study assessed caregivers' experience and satisfaction with care coordination. METHOD: Caregivers of Medicaid-enrolled children with disabilities (n = 2,061) completed a survey (online or by telephone) collecting information on the caregivers' experiences and satisfaction with care coordination using the Family Experiences with Coordination of Care questionnaire. RESULTS: Eighty percent of caregivers with a care coordinator reported receiving help making specialist appointments, and 71% reported help obtaining community services. Caregivers who reported that the care coordinator helped with specialist appointments or was knowledgeable, supportive, and advocating for children had increased odds of satisfaction (odds ratio = 3.46, 95% confidence interval = [1.01, 11.77] and odds ratio = 1.07, 95% confidence interval = [1.03, 1.11], respectively). DISCUSSION: Findings show opportunities for improving care coordination in Medicaid-enrolled children with disabilities and that some specific elements of care coordination may enhance caregiver satisfaction with care.

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.

Families' Priorities Regarding Hospital-to-Home Transitions for Children With Medical Complexity.

BACKGROUND: National health care policy recommends that patients and families be actively involved in discharge planning. Although children with medical complexity (CMC) account for more than half of pediatric readmissions, scalable, family-centered methods to effectively engage families of CMC in discharge planning are lacking. We aimed to systematically examine the scope of preferences, priorities, and goals of parents of CMC regarding planning for hospital-to-home transitions and to ascertain health care providers' perceptions of families' transitional care goals and needs. METHODS: We conducted semistructured interviews with parents and health care providers at a tertiary care hospital. Interviews were continued until thematic saturation was reached. Interviews were audio recorded, transcribed verbatim, and analyzed to identify emergent themes via a general inductive approach. RESULTS: Thirty-nine in-depth interviews were conducted, including 23 with family caregivers of CMC and 16 with health care providers. Families' priorities, preferences, and goals for hospital-to-home transitions aligned with 7 domains: effective engagement with health care providers, respect for families' discharge readiness, care coordination, timely and efficient discharge processes, pain and symptom control, self-efficacy to support recovery and ongoing child development, and normalization and routine. These domains also emerged in interviews with health care providers, although there were minor differences in themes discussed. CONCLUSIONS: Although CMC have diverse transitional care needs, their families' priorities, preferences, and goals aligned with 7 domains that bridged their hospital admission with reestablishment of a home routine. This research provides essential foundational data to engage families in discharge planning, guiding the operationalization of national health policy recommendations.

The effectiveness of family-centered transition processes from hospital settings to home: a review of the literature.

BACKGROUND AND OBJECTIVES: The quality of care transitions is of growing concern because of a high incidence of postdischarge adverse events, poor communication with patients, and inadequate information transfer between providers. The objective of this study was to conduct a targeted literature review of studies examining the effectiveness of family-centered transition processes from hospital- and emergency department (ED)-to-home for improving patient health outcomes and health care utilization. METHODS: We conducted an electronic search (2001-2012) of PubMed, CINAHL, Cochrane, PsycInfo, Embase, and Web of Science databases. Included were experimental studies of hospital and ED-to-home transition interventions in pediatric and adult populations meeting the following inclusion criteria: studies evaluating hospital or ED-to-home transition interventions, study interventions involving patients/families, studies measuring outcomes≤30 days after discharge, and US studies. Transition processes, principal outcome measures (patient health outcomes and health care utilization), and assessment time-frames were extracted for each study. RESULTS: The search yielded 3458 articles, and 16 clinical trials met final inclusion criteria. Four studies evaluated pediatric ED-to-home transitions and indicated family-tailored discharge education was associated with better patient health outcomes. Remaining trials evaluating adult hospital-to-home transitions indicated a transition needs assessment or provision of an individualized transition record was associated with better patient health outcomes and reductions in health care utilization. The effectiveness of postdischarge telephone follow-up and/or home visits on health care utilization showed mixed results. CONCLUSIONS: Patient-tailored discharge education is associated with improved patient health outcomes in pediatric ED patients. Effective transition processes identified in the adult literature may inform future quality improvement research regarding pediatric hospital-to-home transitions.

Validity and responsiveness of the pediatric quality of life inventory (PedsQL) 4.0 generic core scales in the pediatric inpatient setting.

IMPORTANCE: Validated patient-reported outcomes responsive to clinical change are needed to evaluate the effectiveness of quality improvement interventions. OBJECTIVES: To evaluate responsiveness, construct validity, and predictive validity of the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales in the pediatric inpatient setting. DESIGN, SETTING, AND PARTICIPANTS: Prospective, cohort study of parents and caregivers of patients 1 month to 18 years old (n = 4637) and patients 13 to 18 years old (n = 359) admitted to Seattle Children's Hospital between October 1, 2011, and December 31, 2013. Of 7184 eligible participants invited to complete the survey, 4637 (64.5%) completed the PedsQL on admission, and of these 2694 (58.1%) completed the follow-up survey 2 to 8 weeks after discharge. MAIN OUTCOMES AND MEASURES: Responsiveness was assessed by calculating improvement scores (difference between follow-up and admission scores). Construct validity was examined by comparing the mean improvement scores for known groups differing by medical complexity. Predictive validity was assessed using Poisson regression to examine associations among admission scores, prolonged length of stay (≥3 days), and 30-day readmissions or emergency department (ED) return visits. Similar models examined the association between improvement scores and risk for 30-day readmissions or ED return visits. RESULTS: The mean (SD) PedsQL improvement scores (scale, 0-100) were 22.1 (22.7) for total, 29.4 (32.4) for physical, and 17.1 (21.0) for psychosocial. The mean PedsQL total improvement scores were lower for patients with medically complex conditions compared with patients without chronic conditions (13.7 [95% CI, 11.6-15.8] vs. 24.1 [95% CI, 22.4-25.7], P < .001). A 10-point decrement in the PedsQL total admission score below the established community-based mean was associated with an increase in risk for prolonged length of stay (15% [95% CI, 13%-17%]), 30-day readmissions (8% [95% CI, 3%-14%]), and ED return visits (13% [95% CI, 6%-20%]). A 5-point decrement in the PedsQL total improvement score below the study sample mean improvement score was associated with an increase in risk for 30-day readmissions or ED return visits (9% [95% CI, -1% to 19%]). CONCLUSIONS AND RELEVANCE: The PedsQL demonstrated responsiveness, construct validity, and predictive validity in hospitalized pediatric patients. The PedsQL may be a useful patient-reported outcome for hospital-based clinical effectiveness research.

Influence of race and socioeconomic status on engagement in pediatric primary care.

OBJECTIVE: To understand the association of race/ethnicity with engagement in pediatric primary care and examine how any racial/ethnic disparities are influenced by socioeconomic status. METHODS: Visit videos and parent surveys were obtained for 405 children who visited for respiratory infections. Family and physician engagement in key visit tasks (relationship building, information exchange, and decision making) were coded. Two parallel regression models adjusting for covariates and clustering by physician were constructed: (1) race/ethnicity only and (2) race/ethnicity with SES (education and income). RESULTS: With and without adjustment for SES, physicians seeing Asian families spoke 24% fewer relationship building utterances, compared to physicians seeing White, non-Latino families (p<0.05). Latino families gathered 24% less information than White, non-Latino families (p<0.05), but accounting for SES mitigates this association. Similarly, African American families were significantly less likely to be actively engaged in decision making (OR=0.32; p<0.05), compared to White, non-Latino families, but adjusting for SES mitigated this association. CONCLUSION: While engagement during pediatric visits differed by the family's race/ethnicity, many of these differences were eliminated by accounting for socioeconomic status. PRACTICE IMPLICATIONS: Effective targeting and evaluation of interventions to reduce health disparities through improving engagement must extend beyond race/ethnicity to consider socioeconomic status more broadly.