Medical Complexity, Language Use, and Outcomes in the Pediatric ICU.

OBJECTIVES: To determine whether use of a language other than English (LOE) would be associated with medical complexity, and whether medical complexity and LOE together would be associated with worse clinical outcomes. METHODS: The primary outcome of this single-site retrospective cohort study of PICU encounters from September 1, 2017, through August 31, 2022 was an association between LOE and medical complexity. Univariable and multivariable analyses were performed between demographic factors and medical complexity, both for unique patients and for all encounters. We investigated outcomes of initial illness severity (using Pediatric Logistic Organ Dysfunction-2), length of stay (LOS), days without mechanical ventilation or organ dysfunction using a mixed effects regression model, controlling for age, sex, race and ethnicity, and insurance status. RESULTS: There were 6802 patients and 10 011 encounters. In multivariable analysis for all encounters, Spanish use (adjusted odds ratio [aOR], 1.29; 95% confidence interval [CI], 1.11-1.49) and language other than English or Spanish (LOES) (aOR, 1.36; 95% CI, 1.02-1.80) were associated with medical complexity. Among unique patients, there remained an association between use of Spanish and medical complexity in multivariable analysis (aOR, 1.26; 95% CI, 1.05-1.52) but not between LOES and medical complexity (aOR, 1.30; 95% CI, 0.92-1.83). Children with medical complexity (CMC) who used an LOES had fewer organ dysfunction-free days (P = .003), PICU LOS was 1.53 times longer (P = .01), and hospital LOS was 1.45 times longer (P = .01) compared with CMC who used English. CONCLUSIONS: Use of an LOE was independently associated with medical complexity. CMC who used an LOES had a longer LOS.

Predictors of psychosocial adaptation in children with CHD.

Survival of CHD has significantly improved, but children with CHD remain susceptible to neurodevelopmental and psychosocial impairments. Our goal was to investigate the association between socio-demographic factors and psychosocial adaptation for future intervention. A retrospective cross-sectional study of an independent children's hospital's records was conducted. Psychosocial adaptation was measured by the Pediatric Cardiac Quality of Life Inventory Psychosocial Impact score (range 0-50, higher score indicates greater psychosocial adaptation). Bivariate and regression analyses were performed to estimate relationships between Psychosocial Impact score and socio-demographic variables including Child Opportunity Index, family support, financial support, academic support, and extracurricular activities. A total of 159 patients were included. Compared to patients in high opportunity neighbourhoods, patients in low opportunity neighbourhoods had a 9.27 (95% confidence interval [-17.15, -1.40], p = 0.021) point lower Psychosocial Impact score, whereas patients in moderate opportunity neighbourhoods had a 15.30 (95% confidence interval [-25.38, -5.22], p = 0.003) point lower Psychosocial Impact score. Compared to patients with adequate family support, those with limited support had a 6.23 point (95% confidence interval [-11.82, -0.643], p = 0.029) lower Psychosocial Impact score. Patients in moderate opportunity neighbourhoods had a higher Psychosocial Impact score by 11.80 (95% confidence interval [1.68, 21.91], p = 0.022) when they also had adequate family support compared to those with limited family support. Our findings indicate that among children with CHD, psychosocial adaptation is significantly impacted by neighbourhood resources and family support structures. These findings identify possible modifiable and protective factors to improve psychosocial adaptation in this vulnerable population.

Acute care utilization for ambulatory care-sensitive conditions among publicly insured children.

BACKGROUND: Although characteristics of preventable hospitalizations for ambulatory care-sensitive conditions (ACSCs) have been described, less is known about patterns of emergency and other acute care utilization for ACSCs among children who are not hospitalized. We sought to describe patterns of utilization for ACSCs according to the initial site of care and to determine characteristics associated with seeking initial care in an acute care setting rather than in an office. A better understanding of the sequence of health care utilization for ACSCs may inform efforts to shift care for these common conditions to the medical home. METHODS: We performed a retrospective analysis of pediatric encounters for ACSCs between 2017 and 2019 using data from the IBM Watson MarketScan Medicaid database. The database includes insurance claims for Medicaid-insured children in 10 anonymized states. We assessed the initial sites of care for ACSC encounters, which were defined as either acute care settings (emergency or urgent care) or office-based settings. We used generalized estimating equations clustered on patient to identify associations between encounter characteristics and the initial site of care. RESULTS: Among 7,128,515 encounters for ACSCs, acute care settings were the initial site of care in 27.9%. Diagnoses with the greatest proportion of episodes presenting to acute care settings were urinary tract infection (52.0% of episodes) and pneumonia (44.6%). Encounters on the weekend (adjusted odds ratio [aOR] 6.30, 95% confidence interval [CI] 6.27-6.34 compared with weekday) and among children with capitated insurance (aOR 1.55, 95% CI 1.54-1.56 compared with fee for service) were associated with increased odds of seeking care first in an acute care setting. CONCLUSIONS: Acute care settings are the initial sites of care for more than one in four encounters for ACSCs among publicly insured children. Expanded access to primary care on weekends may shift care for ACSCs to the medical home.

Codesign of remote data collection for chronic management of pediatric home mechanical ventilation.

INTRODUCTION: Outpatient monitoring of children using invasive home mechanical ventilation (IHMV) is recommended, but access to care can be difficult. This study tested if remote (home-based) data collection was feasible and acceptable in chronic IHMV management. METHODS: A codesign study was conducted with an IHMV program, home nurses, and English- and Spanish-speaking parent-guardians of children using IHMV (0-17 years; n = 19). After prototyping, parents used a remote patient monitoring (RPM) bundle to collect patient heart rate, respiratory rate (RR), oxygen saturation, end-tidal carbon dioxide (EtCO2 ), and ventilator pressure/volume over 8 weeks. User feedback was analyzed using qualitative methods and the System Usability Scale (SUS). Expected marginal mean differences within patient measures when awake, asleep, or after a break were calculated using mixed effects models. RESULTS: Patients were a median 2.9 years old and 11 (58%) took breaks off the ventilator. RPM data were entered on a mean of 83.7% (SD ± 29.1%) weeks. SUS scores were 84.8 (SD ± 10.5) for nurses and 91.8 (SD ± 10.1) for parents. Over 90% of parents agreed/strongly agreed that RPM data collection was feasible and relevant to their child's care. Within-patient comparisons revealed that EtCO2 (break-vs-asleep 2.55 mmHg, d = 0.79 [0.42-1.15], p < .001; awake-vs-break 1.48, d = -0.49 [0.13-0.84], p = .02) and RR (break-vs-asleep 16.14, d = 2.12 [1.71-2.53], p < .001; awake-vs-break 3.44, d = 0.45 [0.10-0.04], p = .03) were significantly higher during ventilator breaks. CONCLUSIONS: RPM data collection in children with IHMV was feasible, acceptable, and captured clinically meaningful vital sign changes during ventilator breaks, supporting the clinical utility of RPM in IHMV management.

Parental self-efficacy managing a child's medications and treatments: adaptation of a PROMIS measure.

PURPOSE: Self-efficacy is important for managing chronic conditions; however, its measurement in pediatric healthcare settings remains rare. The goal of this project was to adapt an existing disease-agnostic adult self-efficacy patient reported outcome (PRO) measure to enhance suitability of items for measuring the self-efficacy of parents that manage their children's health conditions. METHODS: We adapted the existing Patient-Reported Outcomes Measurement Information System® (PROMIS®) adult self-efficacy healthcare measure to parental voice. First, a targeted literature review informed rephrasing of the adult items and identification of new pediatric-specific content. The initial item pool was revised based on input from 12 multidisciplinary experts. Next cognitive interviews of adapted items were simultaneously conducted with English and Spanish-speaking parents of pediatric patients with a range of chronic and/or disabling conditions recruited from a Midwestern children's hospital to finalize the measure. RESULTS: Findings resulted in an initial item pool of 33 pediatric-specific items which were narrowed to 31 draft items based on expert input. Parent cognitive interview findings (N = 26) informed further item reduction resulting in a final measure consisting of 30 items representing nine domains. Fourteen items are relevant to children regardless of condition severity (e.g., health care information/decision making; symptom identification/management) and 16 items are relevant to children with specific health care needs (e.g., medication usage, equipment). CONCLUSION: We conducted a first step in developing a condition-agnostic, PRO measure of parental self-efficacy managing their children's chronic and/or disabling conditions that is acceptable and understandable to English and Spanish-speaking parents.

Self-efficacy, which is someone's confidence in completing a task, is important for managing a chronic health condition. Knowing parents' self-efficacy managing their children's health conditions may be an important step in supporting their children's health but no single measure is available for diverse sets of conditions. In this paper, we present the development of a new patient reported outcomes measure designed to assess self-efficacy of parents managing their child's chronic and/or disabling conditions. We found that the measure is both acceptable and understandable to English and Spanish speakers and may be useful to proactively identify parents in need of additional supports at hospital discharge or at the time of a new diagnosis.

Paying Family Medical Caregivers for Children's Home Healthcare in Colorado: A Working Medicaid Model.

OBJECTIVE: To compare the characteristics and healthcare use of children with medical complexity who receive paid certified nursing assistant (CNA) care by a family member (family CNA) and by a traditional nonfamily member (nonfamily CNA). STUDY DESIGN: This was retrospective cohort study of children who received CNA care through Colorado's Medicaid paid family caregiving program between 2017 and 2019 by a home healthcare agency. We compared patient characteristics between the family CNA and nonfamily CNA groups. A multivariable Poisson regression model was used to compare hospitalization rates (days in the hospital per year), adjusting for patient age patient sex, nursing care, and complex chronic condition. RESULTS: Of 861 patients, 79% (n = 680) received family CNA care and 21% (n = 181) received nonfamily CNA care. Patient demographics and hospitalization did not differ between the groups, although patients who had family CNAs were less likely to receive additional nursing-level care (42% vs 60%, P < .01). Family and nonfamily CNA caregivers had similar characteristics, except that family CNA caregivers had substantially better 3-year retention (82% vs 9%, P < .01) despite lower average hourly pay ($14.60 vs $17.60 per hour, P < .01). Hospitalizations were rare (<10% of patients). In the adjusted model, patients who received family CNA care experienced 1 more hospitalized day per year, compared with patients who received nonfamily CNA care (P < .001). CONCLUSIONS: Paid family caregivers provided CAN-level care to children with medical complexity with a greater employee retention compared with nonfamily CNA caregivers, with marginally different hospitalization rates using a family-centered approach. This model may help address workforce shortages while also providing income to family caregivers.

Children With Medical Complexity and Mental and Behavioral Disorders in the Emergency Department.

BACKGROUND: To assess the overlap and admission or transfer rate of children with chronic complex conditions (CCC) and with mental or behavioral health (MBH) disorders among children presenting to the emergency department (ED). METHODS: We performed a cross-sectional analysis from 2 data sources: hospitals in the Pediatric Health Information System (PHIS) and from a statewide sample (Illinois COMPdata). We included ED encounters 2 to 21 years and compared differences in admission and/or transfer between subgroups. Among patients with both a CCC and MBH, we evaluated if a primary MBH diagnosis was associated with admission or transfer. RESULTS: There were 11 880 930 encounters in the PHIS dataset; 0.7% had an MBH and CCC, 2.2% had an MBH, and 8.0% had a CCC. Patients with an MBH and CCC had a greater need for admission or transfer (86.5%) compared with patients with an MBH alone (57.7%) or CCC alone (52.0%). Among 5 362 701 patients in the COMPdata set, 0.2% had an MBH and CCC, 2.1% had an MBH, and 3.2% had a CCC, with similar admission or transfer needs between groups (61.8% admission or transfer with CCC and MBH; 42.8% MBH alone, and 27.3% with CCC alone). Within both datasets, patients with both a MBH and CCC had a higher odds of admission or transfer when their primary diagnosis was an MBH disorder. CONCLUSIONS: While accounting for a small proportion of ED patients, CCC with concomitant MBH have a higher need for admission or transfer relative to other patients.

At-home end-tidal carbon dioxide measurement in children with invasive home mechanical ventilation.

BACKGROUND: Carbon dioxide concentration trending is used in chronic management of children with invasive home mechanical ventilation (HMV) in clinical settings, but options for end-tidal carbon dioxide (EtCO2 ) monitoring at home are limited. We hypothesized that a palm-sized, portable endotracheal capnograph (PEC) that measures EtCO2 could be adapted for in-home use in children with HMV. METHODS: We evaluated the internal consistency of the PEC by calculating an intraclass correlation coefficient of three back-to-back breaths by children (0-17 years) at baseline health in the clinic. Pearson's correlation was calculated for PEC EtCO2 values with concurrent mean values of in-clinic EtCO2 and transcutaneous CO2 (TCM) capnometers. The Bland-Altman test determined their level of agreement. Qualitative interviews and surveys assessed usability and acceptability by family-caregivers at home. RESULTS: CO2 values were collected in awake children in varied activity levels and positions (N = 30). The intraclass correlation coefficient for the PEC was 0.95 (p < 0.05). The correlation between the PEC and in-clinic EtCO2 device was 0.85 with a mean difference of -3.8 mmHg and precision of ±1.1 mmHg. The correlation between the PEC and the clinic TCM device was 0.92 with a mean difference of 0.2 mmHg and precision of ±1.0. Family-caregivers (N = 10) trialed the PEC at home; all were able to obtain measurements at home while children were awake and sometimes asleep. CONCLUSIONS: A portable, noninvasive device for measuring EtCO2 was feasible and acceptable, with values that trend similarly to currently in-practice, outpatient models. These devices may facilitate monitoring of EtCO2 at home in children with invasive HMV.

Physical and Environmental Barriers to Mobility and Participation in Children With Medical Complexity: A Qualitative Study.

This qualitative study evaluated barriers and facilitators to mobility in the homes of children with medical complexity (CMC) and the subsequent impact on CMC and their families. Eighteen caregivers of CMC were interviewed. Parents described that accessibility barriers impaired delivery of care at home and impacted the child's participation in family life. The most inaccessible areas were stairs and bathrooms. Mobility and transfers became more difficult as children grew larger. Parents and children sustained injuries from performance of activities of daily living (ADLs). When available, durable medical equipment (DME) and home modifications improved home access and typically were funded using insurance and state Title V funds. However, parents reported that larger home modifications, such as bathroom modifications, were cost prohibitive. A pediatrician's inquiry about mobility barriers may reveal crucial information about delivery of home care to CMC. CMC may be referred to rehabilitation specialists to address mobility needs.

Children's Hospital Transfers From Referring Emergency Departments: Which Patients Bypassed the Pediatric Emergency Department?

OBJECTIVES: Children are increasingly transferred from emergency departments (EDs) to children's hospitals for inpatient care. The existing literature on the use of direct admission (DA) specifically among pediatric patients transferred from referring EDs remains sparse.The objective of this study was to identify demographic, clinical, and contextual factors associated with the use of direct-to-inpatient versus ED-to-inpatient admission among patients transferred to children's hospitals from EDs. METHODS: This was a retrospective chart review of nontrauma patients admitted to inpatient services at a single tertiary children's hospital after interfacility transfer from EDs between July 1, 2016, and June 30, 2017. Characteristics of the patient population and referring EDs were described; unadjusted associations between rates of DA and the demographic, clinical, and contextual variables of encounters were performed; and a logistic model quantified the relevant associations as odds ratios (ORs). RESULTS: Of 2939 study encounters, 78% resulted in DA. Among White patients, private insurance was associated with decreased direct admission (OR, 0.5; 95% confidence interval [CI], 0.4-0.8). Younger patients and patients with respiratory diagnoses (OR, 3.9; 95% CI, 2.8-5.3) had increased likelihood of DA. Patients with gastrointestinal diagnoses had decreased likelihood of DA (OR, 0.6; 95% CI, 0.4-0.7). CONCLUSIONS: At a tertiary hospital with a high rate of DA among patients transferred from other EDs, we identified factors that were associated with the use of direct versus ED admission. Our results identify specific populations in which future work could inform admission processes for interfacility transfers.

The Associations of Child's Clinical Conditions and Behavioral Problems with Parenting Stress among Families of Preschool-Aged Children: 2018-2019 National Survey of Child Health.

To understand parental stress resulting from parenting young children, the current literature has primarily focused on families of children with clinical conditions, but has placed far less attention on the general population. The aim of this study was to examine parenting stress related to children's clinical conditions and behavioral problems in a nationally representative sample of US children aged 3 to 5 years. The study sample included 8454 children aged 3 to 5 years and their parents who participated in the 2018-2019 US National Survey of Child Health (NSCH). Using online/paper NSCH questionnaires, parents reported their children's special health care needs (SHCN), clinically diagnosed mental, emotional, developmental, and behavioral (MEDB) problems (e.g., anxiety problem, developmental delay), and externalizing behaviors. Parents also reported the frequency of feeling aggravated from parenting the participating child as an indicator of elevated parenting stress. In the sample, the prevalence of elevated parenting stress was 5.1% overall (95% CI = 4.2, 6.0); however, it was significantly higher among parents of children with SHCN (20.8%; 95% CI = 16.7, 24.9), with MEDB problems (24.8%; 95% CI = 19.9, 29.8), and with externalizing behavior problems (14.7%; 95% CI = 11.8, 17.6). A multivariable logistic regression model showed that elevated parenting stress was associated with the child's SHCN (adjusted odds ratio [AOR] = 2.3; 1.3, 3.9), MEDB problems (AOR = 4.8; 95% CI = 2.5, 9.1), and externalizing behavior problems (AOR = 5.4; 95% CI = 3.1, 9.4). Even in children without SHCN or MEDB problems, externalizing behavior problems were associated with elevated parenting stress (AOR = 6.4; 95% CI = 3.3, 12.7). The findings call for greater attention to subclinical or yet to be diagnosed externalizing behavior problems among the general preschool-aged child population and their underestimated impact on parenting stress.

Improving Support for Care at Home: Parental Needs and Preferences When Caring for Children with Medical Complexity.

INTRODUCTION: We sought to characterize the current supports used by parents to care for children with medical complexity (CMC) at home and parental preferences for additional supports to meet identified gaps. METHOD: Semistructured interviews were conducted with parents of 18 CMC. Interviews were transcribed then analyzed using a constant comparative approach. RESULTS: Extended family and community offloaded nonmedical tasks, assisted financially, gave emotional reinforcement, and cared for CMC. Home health providers also directly cared for CMC, but access and quality varied. Government programs paid for in-home care, but eligibility varied. Parents wanted more paid home care but also more support completing nonmedical tasks, mitigating financial strains, and accessing mental health services. DISCUSSION: Parents of CMC relied on family and community members to help fill existing gaps in-home care, but gaps remained, suggesting the need for more medical and social supports for the in-home care of CMC and their families.

Risk factors for hospital readmission among infants with prolonged neonatal intensive care stays.

OBJECTIVE: To assess risk factors associated with 30-day hospital readmission after a prolonged neonatal intensive care stay. STUDY DESIGN: Retrospective analysis of 57,035 infants discharged >14 days from the NICU between 2013 and 2016. Primary outcome was 30-day, all-cause hospital readmission. Adjusted likelihood of readmission accounting for demographic and clinical characteristics, including chronic conditions was also estimated. RESULTS: The 30-day readmission rate was 10.7%. Respiratory problems accounted for most (31.0%) readmissions. In multivariable analysis, shunted hydrocephalus [OR 2.2 (95%CI 1.8-2.7)], gastrostomy tube [OR 2.0 (95%CI 1.8-2.3)], tracheostomy [OR 1.5 (95%CI 1.2-1.8)], and use of public insurance [OR 1.3 (95%CI 1.2-1.4)] had the highest likelihood of readmission. Adjusted hospital readmission rates varied significantly (p < 0.001) across hospitals. CONCLUSIONS: The likelihood of hospital readmission was highest for infants with indwelling medical devices and public insurance. These findings will inform future initiatives to reduce readmission for high risk infants with medical and social complexity.

Children With Special Health Care Needs and Forgone Family Employment.

BACKGROUND: Family income is known to affect child health, but this relationship can be bidirectional. We sought to characterize this relationship by quantifying forgone family employment (FFE) due to a child's health condition in families of children with special health care needs (CSHCN) with updated figures. METHODS: We conducted a secondary data analysis from the 2016-2017 National Survey of Children's Health. CSHCN with previously employed caregivers were included (N = 14 050). FFE was defined as any family member having stopped work and/or reduced hours because of their child's health or health condition. Child, caregiver, and household characteristics were compared by FFE status. Logistic regression analysis was conducted to evaluate the association between hours of medical care provide by a family member and FFE. US Bureau of Labor Statistics reports were used to estimate lost earnings from FFE. RESULTS: FFE occurred in 14.5% (95% confidence interval [CI] 12.9%-16.1%) of previously employed families with CSHCN and was 40.9% (95% CI 27.1%-54.7%) for children with an intellectual disability. We observed disproportionately high FFE among CSHCN who were 0 to 5 years old and of Hispanic ethnicity. We found a strong association between FFE and increasing hours of family-provided medical care, with an adjusted odds ratio (aOR) of 1.72 (95% CI 1.25-2.36) for <1 hour per week (compared with 0 hours), an aOR of 5.96 (95% CI 4.30-8.27) for 1 to 4 hours per week, an aOR of 11.89 (95% CI 6.19-22.81) for 5 to 10 hours per week, and an aOR of 8.89 (95% CI 5.26-15.01) for >10 hours per week. Lost earnings for each household with FFE were estimated at ∼$18 000 per year. CONCLUSIONS: With our findings, we highlight the need to implement programs and policies that address forgone income experienced by families of CSHCN.

Caregiver and provider experiences of physical, occupational, and speech therapy for children with medical complexity.

PURPOSE: Children with medical complexity (CMC) often use rehabilitative services ("therapy") to achieve optimal health outcomes. The study aims were to characterize caregiver and provider experiences with: 1) determining the suitability of therapy and 2) obtaining therapy for CMC. METHODS: Primary caregivers of CMC (n = 20) and providers (n = 14) were interviewed using semi-structured questions to elicit experiences of therapy. Interviews were recorded, transcribed and coded to identify caregiver and provider reported themes. Applied thematic analysis was used to characterize themes related to study objectives. RESULTS: Participants endorsed challenges setting therapy goals amongst competing patient and family priorities. They also identified logistical challenges to obtaining therapy, including transition from early intervention services to school-based years. Participants raised concerns about variability in obtaining school-based therapy and insurance coverage of community-based therapy. Overall, funding, salary, credentialing requirements, and training impacts the pediatric therapy workforce's ability to meet the need of CMC. CONCLUSION: Setting the ideal "dose" of therapy within the individual and family context can be challenging for CMC. Sufficient government programming, insurance coverage, and workforce availability were barriers to obtaining services. This study adds a more detailed understanding of therapy for CMC that can be used to inform future research and policy work.

Attitudes and Perceptions of Telemedicine in Response to the COVID-19 Pandemic: A Survey of Naïve Healthcare Providers.

Introduction: Expansion of telemedicine enabled healthcare access during the COVID-19 pandemic. In response to in-person visit restrictions, our institution trained >1,000 clinicians in telemedicine. Little is known about telemedicine-naïve pediatric healthcare provider's perceptions as they adopted telemedicine practice. Methods: We conducted a cross-sectional survey of clinicians after expanding telemedicine practice at an independent children's hospital. The survey assessed experience with, concerns about, and intentions to continue telemedicine. Outpatient providers were included if they were first trained for telemedicine in response to COVID-19 and conducted at least one video visit, 3/21/2020-6/30/2020. Descriptive statistics were calculated; perceptions were compared across telemedicine activity level quartiles (based on proportions of visits delivered by video in June 2020) using Fisher's exact tests. Results: Of 609 survey responses, 305 (50.1%) met inclusion criteria, representing various roles and disciplines. Over half (54.1%) conducted >20 video visits 3/21/2020-6/30/2020. More than 75% of providers found telemedicine easy to learn. Providers with greater proportions of video visits in a typical week in June reported greater ease of incorporating telemedicine into clinical practice and greater intention to continue telemedicine practice in 6 months. Nearly all providers endorsed concerns. Patient care experiences reinforced technology-related concerns and alleviated liability and privacy concerns. Payer reimbursement was the leading influencer of anticipated future use of telemedicine. Discussion: Providers who conducted more telemedicine encounters reported greater ease of incorporating telemedicine into practice. Provider concerns were influenced by patient care experiences. Targeted training and quality improvement strategies are needed to sustain a robust post-pandemic telemedicine program.

Parent Experiences With Electronic Medication Monitoring in Pediatric Asthma Management: Qualitative Study.

BACKGROUND: Electronic medication monitoring (EMM) is a digital tool that can be used for tracking daily medication use. Previous studies of EMM in asthma management have been conducted in adults or have examined pediatric interventions that use EMM for less than 1 year. To understand how to improve EMM-enhanced interventions, it is necessary to explore the experiences of parents of children with asthma, recruited from outpatient practices, who completed a 12-month intervention trial. OBJECTIVE: The objective of our study was to use qualitative inquiry to answer the following questions: (1) how did using an EMM-enhanced intervention change parents'/caregivers' experiences of managing their child's asthma, and (2) what do parents recommend for improving the intervention in the future? METHODS: Parents were recruited from the intervention arm of a multicomponent health intervention enhanced by Bluetooth-enabled sensors placed on inhaler medications. Semistructured interviews were conducted with 20 parents of children aged 4-12 years with asthma. Interviews were audio-recorded, transcribed, and inductively analyzed using a constant comparative approach. RESULTS: Interview participants reflected an even mix of publicly and privately insured children and a diverse racial-ethnic demographic. Parents discussed 6 key themes related to their experience with the EMM-enhanced intervention for the management of their child's asthma: (1) compatibility with the family's lifestyle, (2) impact on asthma management, (3) impact on the child's health, (4) emotional impact of the intervention, (5) child's engagement in asthma management with the intervention, and (6) recommendations for future intervention design. Overall, parents reported that the 12-month EMM intervention was compatible with their daily lives, positively influenced their preventive and acute asthma management, and promoted their child's engagement in their own asthma management. While parents found the intervention acceptable and generally favorable, some parents identified compatibility issues for families with multiple caregivers and frustration when the technology malfunctioned. CONCLUSIONS: Parents generally viewed the intervention as a positive influence on the management of their child's asthma. However, our study also highlighted technology challenges related to having multiple caregivers, which will need to be addressed in future iterations for families. Attention must be paid to the needs of parents from low socioeconomic households, who may have more limited access to reliable internet or depend on other relatives for childcare. Understanding these family factors will help refine how a digital tool can be adopted into daily disease management of pediatric asthma.

A Retrospective Study of Children Transferred from General Emergency Departments to a Pediatric Emergency Department: Which Transfers Are Potentially Amenable to Telemedicine?

OBJECTIVE: To characterize children who experienced interfacility emergency department (ED) transfers with discharge home, and identify care potentially amenable to telemedicine in lieu of transfer. STUDY DESIGN: Retrospective cohort study (July 2016 to June 2017) of patients transferred from general EDs to an academic pediatric ED and discharged home. The primary outcome was care potentially amenable to telemedicine defined as pediatric emergency medicine (PEM) provider assessment without other in-person subspecialty evaluation, diagnostic evaluation available in a general ED (electrocardiogram, point-of-care, or urine tests), and/or referrals and medications available in a general ED. Analysis included descriptive and χ2 statistics. RESULTS: Of the 1733 patients transferred, 529 (31%) were discharged home and 22% of those discharged home had care potentially amenable to telemedicine. Patients amenable to telemedicine were more likely to be <2 years old (32% vs 17%; P = .002) and to have neurologic (29% vs 17%; P = .005), respiratory (16% vs 4%; P < .001), or urinary (5% vs 1%; P = .004) diagnoses than those whose care was not. Eight in 10 patients received their entire diagnostic evaluation before transfer and one-half received only a PEM provider assessment. An additional 281 cases were evaluated by a subspecialist in person, received routine imaging, or routine interventions. CONCLUSIONS: Children receiving care potentially amenable to telemedicine in lieu of transfer often received their entire diagnostic evaluation before transfer; PEM provider assessment was the mainstay of care after transfer. These findings have implications for informing telemedicine to improve access to PEM expertise and potentially decrease some interfacility transfers.

Integrated Multimodality Telemedicine to Enhance In-Home Care of Infants During the Interstage Period.

Performing interstage home monitoring using digital platforms (teleIHM) is becoming commonplace but, when used alone, may still require frequent travel for in-person care. We evaluated the acceptability, feasibility, and added value of integrating teleIHM with synchronous telemedicine video visits (VVs) and asynchronous video/photo sharing (V/P) during the interstage period. We conducted a descriptive program evaluation of patient-families receiving integrated multimodality telemedicine (teleIHM + VV + V/P) interstage care from 7/15/2018 to 05/15/2020. First, provider focus groups were conducted to develop a program logic model. Second, patient characteristics and clinical course were reviewed and analyzed with univariate statistics. Third, semi-structured qualitative interviews of family caregivers' experiences were assessed using applied thematic analysis. Within the study period, 41 patients received teleIHM + VV + V/P care, of which 6 were still interstage and 4 died. About half (51%) of patients were female and 54% were a racial/ethnic minority. Median age was 42 days old (IQR 25, 58) at interstage start, with a median of 113 total days (IQR 72, 151). A total of 551 VVs were conducted with a median 12 VVs (IQR 7, 18) per patient. Parents sent a median 2 pictures (IQR 0-3, range 0-82). Qualitatively, families reported an adjustment period to teleIHM, but engaged favorably with telemedicine overall. Families felt reassured by the oversight routine telemedicine provided and identified logistical and clinical value to VVs above teleIHM alone, while acknowledging trade-offs with in-person care. Integration of multimodality telemedicine is a feasible and acceptable approach to enhance in-home care during the interstage period.