Healthcare utilization disparities among children with high-risk neuroblastoma treated on Children's Oncology Group clinical trials.

INTRODUCTION: Disparities in relapse and survival from high-risk neuroblastoma (HRNBL) persist among children from historically marginalized groups even in highly standardized clinical trial settings. Research in other cancers has identified differential treatment toxicity as one potential underlying mechanism. Whether racial and ethnic disparities in treatment-associated toxicity exist in HRNBL is poorly understood. METHODS: This is a retrospective study utilizing a previously assembled merged cohort of children with HRNBL on Children's Oncology Group (COG) post-consolidation immunotherapy trials ANBL0032 and ANBL0931 at Pediatric Health Information System (PHIS) centers from 2005 to 2014. Race and ethnicity were categorized to reflect historically marginalized populations as Hispanic, non-Hispanic Black (NHB), non-Hispanic other (NHO), and non-Hispanic White (NHW). Associations between race-ethnicity and intensive care unit (ICU)-level care utilization as a proxy for treatment-associated toxicity were examined with log binomial regression and summarized as risk ratio (RR) and corresponding 95% confidence interval (CI). RESULTS: The analytic cohort included 370 children. Overall, 88 (23.8%) patients required ICU-level care for a median of 3.0 days (interquartile range [IQR]: 1.0-6.5 days). Hispanic children had nearly three times the risk of ICU-level care (RR 3.1, 95% CI: 2.1-4.5; fully adjusted RR [aRR] 2.5, 95% CI: 1.6-3.7) compared to NHW children and the highest percentage of children requiring cardiovascular-driven ICU-level care. CONCLUSION: Children of Hispanic ethnicity with HRNBL receiving clinical trial-delivered therapy were more likely to experience ICU-level care compared to NHW children. These data suggest that further investigation of treatment-related toxicity as a modifiable mechanism underlying outcome disparities is warranted.

A Community-Based COVID-19 Vaccine Education Initiative.

Coronavirus disease 2019 (COVID-19) has had a disparate impact on Black and Latinx communities. Even before the COVID-19 pandemic, inaccessibility and distrust of the medical community rooted in historical oppression led to hesitancy about medical interventions. In Boston, COVID-19 vaccination rates of Black and Latinx adolescents lagged behind their white and Asian peers. In response, Boston Medical Center created community vaccine clinic sites across Suffolk County. Pediatric resident physicians subsequently partnered with Boston Medical Center to establish an accompanying education program entitled "Ask-a-Doc" to help improve health literacy and address vaccine hesitancy that focused on Black and Latinx adolescents. In partnership with multidisciplinary stakeholders, including Boston Public School leaders, Ask-a-Doc pediatric resident physicians staffed 46 community vaccine events in 15 zip codes. At these events, 1521 vaccine doses were administered, with most administered to Black and Latinx community members. As of January 1, 2022, 67% of 51 first-year pediatric resident physicians had participated. Ask-A-Doc is an example of a community-based intervention that directly targets health inequities and misinformation and demonstrates that pediatric resident physicians can meaningfully engage in community outreach with sufficient protected time, resources, and institutional support. The resulting connections may lead to greater trust and credibility within systematically oppressed communities.

Thinking ahead: Parents' worries about late effects of childhood cancer treatment.

BACKGROUND: Many childhood cancersurvivors experience at least one late effect of treatment, and both late effects and persistent cancer-related worry can negatively impact quality of life in survivorship. Little is known about the prevalence or impact of parental worry about late effects early in treatment. This study evaluated parental perceived likelihood, impact, and worry about late effects of childhood cancer. PROCEDURE: We surveyed 96 parents of pediatric cancer patients at Dana-Farber/Boston Children's Cancer and Blood Disorders Center within a year of diagnosis. Parents were asked about their experiences with late effects communication, general worry about late effects, and specific late effect worries. RESULTS: Most (96%) parents valued information about late effects, and 93% considered late effects in their treatment decision-making. Yet, 24% could not recall receiving any information about late effects, and only 51% felt well prepared for potential late effects. Though only 20% of parents considered their child at high risk of experiencing late effects, 61% were extremely/very worried about late effects. Those who felt their child was at high risk of experiencing late effects were more likely to worry (OR = 4.7, P = 0.02). CONCLUSIONS: Many parents feel inadequately informed about late effects of cancer treatment, and only one-fifth of parents consider late effects to be likely for their child. However, a majority of parents worry about late effects, including ones they think their child is unlikely to experience. Although some worry is anticipated, disproportionate worry may be mitigated by addressing both educational shortfalls and emotional concerns.

A Trainee-Led Social Media Advocacy Campaign to Address COVID-19 Inequities.

The coronavirus disease 2019 (COVID-19) pandemic has had a significant impact on the health of people globally. Yet, not all people are being affected by this crisis equally. In the United States, this pandemic has exacerbated long-standing inequities and entrenched structural racism. At the onset of the crisis, few data were available detailing the demographic characteristics of individuals with COVID-19. However, as data emerged, it became apparent that communities of color were disproportionately affected. To illustrate these inequities, we analyzed publicly available race and ethnicity data on COVID-19 cases and deaths and were one of the first groups to compile these findings. We launched a social media campaign to highlight these racial and ethnic inequities and raise awareness among public and elected officials. Given the tremendous amount of missing data, we demanded transparency in state reporting of race and ethnicity data. Using both messaging and mapping tools, we publicized state and city efforts to address these inequities, focusing on the creation of task forces tackling the racial inequities of COVID-19. As racial and ethnic data on COVID-19 cases and mortality became more widely reported, statistics emerged about the downstream effects of these inequities. Despite initial false reassurance that COVID-19 largely spared children, the pandemic has exacerbated many social needs, leading to significant negative impacts on children. For example, as pediatricians, we saw how worsening food insecurity was affecting children. Using social media and infographics, we launched an additional stage of the campaign to illustrate these inequities and highlight advocacy opportunities.

Effectiveness of Virtual vs In-Person Inhaler Education for Hospitalized Patients With Obstructive Lung Disease: A Randomized Clinical Trial.

Importance: Many patients who are hospitalized cannot use inhalers correctly, yet education for their use is often not provided. To address the need for an effective intervention feasible for wide-scale implementation, a virtual teach-to-goal intervention was developed to provide tailored patient-directed education using adaptive learning technology. Objective: To assess whether the virtual teach-to-goal intervention is noninferior to an in-person teach-to-goal intervention for improving inhaler technique. Design, Setting, and Participants: An equivalence and noninferiority randomized clinical trial took place from January 13, 2016, through September 20, 2017, with analyses conducted between October 25, 2017, and September 23, 2019. Adult inpatients with asthma or chronic obstructive pulmonary disease (COPD) admitted to general inpatient wards were eligible. Enrolled participants were randomized to virtual (n = 61) or in-person (n = 60) educational interventions. Investigators and research assistants were masked to interventions. Initial enrollment, study assessments, and delivery of the educational intervention occurred in the hospital; participants returned at 30 days for a follow-up research visit. Interventions: Virtual education was a module delivered via handheld tablet with self-assessment questions before demonstration, narrated video demonstration of the correct technique, and self-assessment questions after demonstration; up to 3 rounds were repeated as needed. In-person education participants received iterative rounds of inhaler technique assessment and education by trained staff. Main Outcomes and Measures: Noninferiority testing of whether virtual vs in-person education achieved an equal percentage with correct inhaler technique after education (>9 of 12 steps correct) against an a priori noninferiority limit of -10%; logistic regression models were used to adjust for differences in baseline technique and health literacy. Results: Among 118 participants (59 in each group), most were black (114 [97%]) and female (76 [64%]), with a mean (SD) age of 54.5 (13.0) years. Correct technique increased similarly before vs after education in virtual (67%; range, 2%-69%) and in-person (66%; range, 17% to 83%) groups, although the difference after intervention exceeded the noninferiority limit (-14%; 95% CI lower bound, -26%). When adjusting for baseline inhaler technique, the difference was equivalent to the noninferiority limit (-10%; 95% CI lower bound, -22%). Conclusions and Relevance: The findings suggest that patient-directed virtual education similarly improved the percentage of participants with correct technique compared with in-person education. Future work should confirm whether virtual teach-to-goal education is noninferior to in-person education and whether it is associated with long-term skills retention, medication adherence, and improved health outcomes. Trial Registration: ClinicalTrials.gov identifier: NCT02611531.

Virtual Teach-To-Goal™ Adaptive Learning of Inhaler Technique for Inpatients with Asthma or COPD.

BACKGROUND: Asthma and chronic obstructive pulmonary disease (COPD) result in more than 1 million hospitalizations annually. Most hospitalized patients misuse respiratory inhalers. This misuse can be corrected with in-person education; however, this strategy is resource intensive and skills wane quickly after discharge. OBJECTIVE: The objective of this study was to develop and pilot a virtual teach-to-goal™ (V-TTG™) inhaler skill training module, using innovative adaptive learning technology. METHODS: Eligible adults with asthma or COPD completed a V-TTG™ metered-dose inhaler session with tailored rounds of narrated demonstration and self-assessments. The primary outcome was the proportion of participants with inhaler misuse post- versus pre-V-TTG™; secondary analyses tested mastery, self-efficacy, and perceived versus actual inhaler skills. Analyses were tested with McNemar's χ2 test (P < .05). RESULTS: Among 90 enrolled participants, the majority were African American (94%), female (62%), and had asthma (68%), with a mean age of 48 years. Among those completing both pre- and post-V-TTG™ (n = 83), misuse was significantly lower post- versus pre-V-TTG™ (24% vs 83%, P < .001). Mastery and confidence both improved significantly (46% vs 7%, P < 0.001; 83% vs 67%, P < .001) post- versus pre-V-TTG™. After V-TTG™, there was greater congruence between perceived versus actual inhaler skills (P < .01). No differences were seen in subgroup analyses for age, health literacy level, or diagnosis. CONCLUSIONS: This study is the first to demonstrate the efficacy of adaptive V-TTG™ learning to teach the inhaler technique. V-TTG™ improved most participants' technique to an acceptable level, reached mastery for half, and also increased self-efficacy and actualized skill. V-TTG™ has potential to improve health care across care transitions.

A video study of drop instillation in both glaucoma and retina patients with visual impairment.

PURPOSE: To compare self-administration of drops in both visually impaired glaucoma subjects and retina subjects. DESIGN: Prospective, observational study. SETTING: Distinct glaucoma and retina practices. STUDY POPULATION: Subjects with glaucoma or retinal diseases with visual acuity of 20/60 or worse in 1 eye, significant field loss, or both. OBSERVATION PROCEDURES: Subjects were video recorded self-instilling a drop onto the worse eye. MAIN OUTCOME MEASURE: Proper instillation of eye drop onto ocular surface. RESULTS: We included 409 subjects (205 glaucoma, 204 retina). Differences between the groups included the following: glaucoma subjects included fewer females (P = .05), included fewer white persons (P < .005), had worse visual acuity (P < .005), had less self-reported arthritis (P < .05), were younger (P < .005), and had more previous exposure to drop use (P < .005). Glaucoma subjects had more bilateral impairment (60% vs 42%; P < .0005). Retina subjects instilled more drops (1.7 vs 1.4; P = .02) and more frequently touched the bottle to the eye (47% vs 33%; P = .003). Of subjects claiming not to miss the eye, nearly one third from each group (P = .32) actually missed. Approximately one third of each group could not get a drop onto the eye (30% retina vs 29% glaucoma; P = .91). Among subjects placing 1 drop onto the eye without touching the adnexae, there was a trend for glaucoma patients to perform better, although both groups did poorly (success, 39% glaucoma vs 31% retina; P = .09). CONCLUSIONS: Among visually impaired subjects, regardless of cause, drop administration was a problem. Both groups wasted drops, contaminated bottles, and had inaccurate perception of their abilities. This has implications for future therapeutic delivery systems.