Leonardo Barrera

Objectives: Over 80% of pediatric emergency department (ED) visits in the United States occur outside of children’s hospitals. Although previous studies have described gaps in pediatric readiness, few studies have focused on pediatric disaster preparedness at rural and critical access hospitals (CAHs). During periods of pediatric surge, CAHs may be forced to manage pediatric patients with delayed transfer times. This mixed-methods study, conducted by the Region V for Kids (RV4K) Pediatric Disaster Center of Excellence, elicited strengths and barriers to pediatric disaster preparedness in rural and CAHs. Methods: We conducted a qualitative study of clinicians from CAHs in the Health Resources and Services Administration (HRSA) Region 5. After completing a demographic survey, respondents were invited to participate in focus groups about pediatric disaster preparedness, followed by an open-response questionnaire about how RV4K can support rural and CAHs. Descriptive statistics were calculated. Focus group transcripts and questionnaire responses were analyzed using a constant comparative approach to identify themes. Results: Of the 41 survey respondents, 19 participated in focus groups. Most study participants worked at EDs seeing <1800 children per year, and less than half had pediatric inpatient capabilities. Few hospital disaster plans considered children. Four focus group themes emerged: strengths of staff and community, staffing limitations, and desire for targeted pediatric education resources and pediatric disaster plan development. Conclusions: Our study engaged directly with staff at rural and CAHs to gain insights about pediatric preparedness that will be used to develop resources specifically tailored to CAHs’ unique clinical needs.

(1) Background: Children with medical complexity (CMC) and neurologic impairment (NI) are a growing population in pediatric intensive care units (PICUs). (2) Objective: Our aim was to explore and describe the experiences and beliefs of PICU providers caring for CMC with NI. (3) Methods: A qualitative interview-based study was conducted. Participants were 20 providers (12 attendings and 8 nurse practitioners) who met inclusion criteria of being a faculty, fellow, or advanced practice provider who worked in a PICU; residents were excluded. Participants were recruited via purposive and snowball sampling until information power was reached, and came from seven PICUs across six states, with 10 participants from the authors’ home institution and 10 from external PICUs. Data were collected via recorded videoconference interviews, which were transcribed. Analysis was conducted and relevant themes were identified using the analytic technique of thematic analysis. Rigor was assured by using two coders. (4) Results: Four main themes were identified: (i) providers view CMC with NI as a distinct population of growing importance; (ii) CMC with NI have care needs that challenge traditional perceptions of PICU practice; (iii) PICU providers expressed ambivalence towards caring for CMC with NI; and (iv) some PICU providers have developed adaptive strategies. (5) Conclusions: This population challenges the typical notion of what pediatric critical care represents. Providers display ambivalence about caring for these patients but can develop strategies to make this work meaningful. Understanding PICU clinicians’ views about CMC with NI can provide insights for improved patient care and reduced provider burnout as the field adapts to this population.

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.

Background: The use of digital technology in pediatric asthma management has emerged as a potential tool for improving asthma management. However, the use of digital tools has the potential to contribute to the inequitable delivery of asthma care because of existing social factors associated with asthma disparities. Our study focused on parents’ chosen language and sociodemographic factors that might shape the use of digital technology in asthma self-management. Objective: This study aims to estimate and compare patient, family, and technology-related characteristics by parents’ chosen language (English or Spanish) and compare a digital literacy measure by sociodemographic factors. Methods: Survey data were collected from July to December 2021 from parents of children with asthma who were seen by a Chicago pediatric health system pulmonary provider. Questions assessed patient and family characteristics, digital technology use, and digital literacy, measured using the validated eHealth Literacy Scale (eHEALS). Chi-square tests and multivariable logistic regression were used for comparisons, and Kruskal-Wallis tests were used for comparing median eHEALS scores by social characteristics. Results: Of the 197 parents surveyed, 24.4% (n=49) of parents identified as a race categorized as other, 37.1% (n=67) as White, and 38.6% (n=75) as Black; 47.2% (n=93) identified as Hispanic/Latino/Latina. Additionally, 79.7% (n=157) of parents preferred English, and 20.3% (n=40) preferred Spanish. English-speaking parents were more likely to report having a data plan for their smartphone (117/157, 74.5%) or high-speed internet (138/157, 87.9%) compared to Spanish-speaking parents (smartphone: 23/40, 58%; P=.03; internet: 27/40, 68%; P=.002). Compared with Spanish-speaking parents, English-speaking parents were less likely to report having a lot or some concern about paying for internet (28/40, 70% vs 83/157, 52.9%; P=.046) or about data privacy (35/40, 88% vs 105/157, 67.5%; P=.01). Digital literacy scores differed significantly by race, income, education level, and language. In a multivariable model, language was not a significant factor for having high-speed internet service (P=.12) or concern about paying for internet at home (P=.60), but it was a significant factor for concerns about data privacy (P=.04). Conclusions: The significant differences in technology-related characteristics suggest that digital connectivity, affordability, and data privacy may also be important factors in considering digital technology use in asthma care.

Background: Suboptimal adherence to 6-mercaptopurine (6-MP) is prevalent in pediatric acute lymphoblastic leukemia (ALL) and associated with increased risk of relapse. Rapid uptake of personal technology makes mobile health (mHealth) an attractive platform to promote adherence. Objective: Study objectives were to examine access to mobile technology and preferences for an mHealth intervention to improve medication adherence in pediatric ALL. Methods: A cross-sectional survey was administered in oncology clinic to parents of children with ALL as well as adolescents and young adults (AYAs) with ALL receiving maintenance chemotherapy. Results: A total of 49 parents (median age [IQR] 39 [33-42] years; female 76% [37/49]) and 15 patients (median age [IQR] 17 [16-19]; male 80% [12/15]) participated. All parents and AYAs owned electronic tablets, smartphones, or both. Parents’ most endorsed mHealth app features included a list of medications (71%, 35/49), information about 6-MP (71%, 35/49), refill reminders (71%, 35/49), and reminders to take 6-MP (71%, 35/49). AYAs' most endorsed features included refill reminders (73%, 11/15), reminders to take 6-MP (73%, 11/15), and tracking 6-MP (73%, 11/15). Conclusions: Parents and AYAs reported ubiquitous access to mobile technology and strong interest in multiple adherence-specific mHealth app features. Parents and AYAs provided valuable insight into preferred features for a multifunctional behavioral intervention (mHealth app) to promote medication adherence in pediatric ALL.

BACKGROUND Suboptimal adherence to 6-mercaptopurine (6-MP) is prevalent in pediatric acute lymphoblastic leukemia (ALL) and associated with increased risk of relapse. Rapid uptake of personal technology makes mobile health (mHealth) an attractive platform to promote adherence. OBJECTIVE Study objectives were to examine access to mobile technology and preferences for an mHealth intervention to improve medication adherence in pediatric ALL. METHODS A cross-sectional survey was administered in oncology clinic to parents of children with ALL as well as adolescents and young adults (AYAs) with ALL receiving maintenance chemotherapy. RESULTS A total of 49 parents (median age [IQR] 39 [33-42] years; female 76% [37/49]) and 15 patients (median age [IQR] 17 [16-19]; male 80% [12/15]) participated. All parents and AYAs owned electronic tablets, smartphones, or both. Parents’ most endorsed mHealth app features included a list of medications (71%, 35/49), information about 6-MP (71%, 35/49), refill reminders (71%, 35/49), and reminders to take 6-MP (71%, 35/49). AYAs' most endorsed features included refill reminders (73%, 11/15), reminders to take 6-MP (73%, 11/15), and tracking 6-MP (73%, 11/15). CONCLUSIONS Parents and AYAs reported ubiquitous access to mobile technology and strong interest in multiple adherence-specific mHealth app features. Parents and AYAs provided valuable insight into preferred features for a multifunctional behavioral intervention (mHealth app) to promote medication adherence in pediatric ALL.