Mobile and tablet apps, ubiquitous and pervasive computing, wearable computing and domotics for health.

Background. Sickle cell disease (SCD) is a chronic debilitating illness. SCD-related complications result in substantial impairment in quality of life (QOL). Our study objective was to assess the relationship of participants’ characteristics, QOL, hydroxyurea adherence, and SCD-related clinical outcomes in youth with SCD. Procedure. A single-center cross-sectional study. Thirty-four youth with SCD enrolled from clinic between January and December 2015. Participants completed PROMIS® measures and ©Modified Morisky Adherence Scale. Results. Participants had a mean age of 14.8 (SD 2.9) years and 41% were female. Participants’ age correlated with fatigue (rs=0.48; P=0.006), pain (rs=0.32; P=0.07), and anxiety (rs=0.33; P=0.06) scores. Participants with chronic pain had worse upper extremity physical function (P=0.05), pain (P=0.04), anxiety (P=0.05), and depression (P=0.05). Males reported significantly higher hydroxyurea adherence (5.4 versus 3.6, P=0.02) compared to females. Participants with chronic pain had more frequent hospitalizations (P=0.02), emergency room visits (P=0.04), and longer total length of hospital stays over 12-month period (P=0.01). Conclusions. Older and female participants had worse QOL scores, and males reported higher hydroxyurea adherence. Participants with chronic pain reported significant impairment in different QOL domains and had increased healthcare utilization. Future longitudinal studies examining the relationship between participants’ characteristics, QOL, hydroxyurea adherence, and SCD-related clinical outcomes are needed.

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.

The aim of this study was to assess a modified gun violence exposure tool at a pediatric clinic on the West Side of Chicago to identify youth at high risk of future gun violence. A modified version of the SaFETy gun violence exposure tool, studied in a community pediatric primary care setting, was implemented from June to August 2021. Patients and pediatric clinicians were surveyed after pilot. Of 508 eligible patients, 341 youth (67.1%) completed the SaFETy tool. None had a SaFETy score ≥6, the threshold for immediate referral. Over a quarter (26.4%) of youth had scores of 1–5, and of those, 7.8% were referred at the clinician's discretion. Youth (n=84) participants randomly selected to complete an anonymous survey provided feedback about the SaFETY tool, reporting that the questions were easy to understand (92%). All 6 pediatric clinicians surveyed agreed that the tool helped to identify youth exposed to gun violence. Screening for gun violence exposure among youth is logistically feasible in the pediatric outpatient setting. A more sensitive validated tool to stratify low-/medium-risk patients in the primary care setting is needed.

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.

(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.