Using Cost Conversations to Address Financial Toxicity in Pediatric Asthma Care: Findings From a Survey of Caregivers.

INTRODUCTION: Asthma care teams are well-positioned to help caregivers address financial toxicity in pediatric asthma care, although discussing cost can be challenging. We sought to characterize cost conversations in pediatric asthma specialty care. METHOD: We surveyed 45 caregivers of children aged 4-17 with asthma. Eligible caregivers reported costs concerns and had accompanied their child to a multisite asthma specialty practice in North Carolina. RESULTS: About one-third of caregivers reported a cost conversation (36%). Cost conversations were less common among caregivers whose child had public versus private health insurance (16% vs. 56%), who attended a telehealth versus in-person visit (6% vs. 52%), or who did not versus did want a conversation (19% vs. 77%, all p < .05). Common cost conversation topics were medications and equipment like spacers. DISCUSSION: Our findings suggest cost conversations may be relatively uncommon in pediatric asthma care, particularly for publicly insured patients and telehealth visits.

Pediatric pulmonology 2022 year in review: Asthma.

In 2022, new research studies influenced the field of pediatric asthma with improvements in diagnosis and evaluation; new treatment options including biologic therapies; changes in risk factors for asthma; and increased discussion about the impact of social determinants of health on asthma. Additionally, three years after the start of the COVID-19 pandemic, we continue to see the impact of SARS-CoV-2 virus on pediatric asthma care. In this review article, we summarize the significant findings from publications in Pediatric Pulmonology and other relevant journals from the last year. We hope this review will provide new insight within the field of pediatric asthma, as well as guidance for implementation into clinical practice.

Impact of Hurricane Matthew on a Cohort of Adolescents With Asthma in North Carolina.

OBJECTIVE: The aim of this study was to look at a cohort of adolescents who were already enrolled in a randomized controlled trial to see (1) how demographics were associated with hurricane impact, and (2) how hurricane impact was associated with reported asthma quality of life. METHODS: One hundred fifty-one adolescents ages 11-17 and their parents enrolled in a randomized controlled trial at 2 sites in southeastern North Carolina completed questions about asthma quality of life, demographics, and the impact of Hurricane Matthew. RESULTS: The most common effects of Hurricane Matthew were that the family's home was damaged or flooded (32.5%), the school was damaged or flooded (31.8%), and the home had mold or mildew as a result of flooding or damage (25.8%). Problems with access to care were more common for families whose adolescent was non-White (P = 0.04), on Medicaid (P = 0.05), or if the family spoke Spanish at home (P < 0.001). Being affected by the hurricane was negatively associated with asthma quality of life. CONCLUSIONS: Hurricane Matthew had significant impact on the health of adolescents with asthma in the affected region, especially in the most vulnerable populations. Providers should ensure that families of adolescents with asthma have a hurricane plan to mitigate impact on their children's health.

Race-specific spirometry equations may overestimate asthma control in Black children and adolescents.

BACKGROUND: A growing body of evidence suggests that use of race terms in spirometry reference equations underestimates disease burden in Black populations, which may lead to disparities in pulmonary disease outcomes. Data on asthma-specific health consequences of using race-adjusted spirometry are lacking. METHODS: We performed a secondary analysis of 163 children from two observational asthma studies to determine the frequencies of participants with ppFEV1 < 80% (consistent with uncontrolled asthma) or ppFEV1 ≥ 80% using race-specific (GLI-African American or Caucasian) vs. race-neutral (GLI-Global) spirometry and their alignment with indicators of asthma control (Asthma Control Test™, ACT). Comparisons of mean ppFEV1 values were conducted using Wilcoxon matched-pairs signed-rank tests. Two group comparisons were conducted using Wilcoxon rank-sum tests. RESULTS: Data from 163 children (100 Black, 63 White) were analyzed. Mean ppFEV1 was 95.4% (SD 15.8) using race-specific spirometry and 90.4% (16.3) using race-neutral spirometry (p < 0.0001). Among 54 Black children with uncontrolled asthma (ACT ≤ 19), 20% had ppFEV1 < 80% using race-specific spirometry compared to 40% using race-neutral spirometry. In Black children with controlled asthma (ACT > 19), 87% had ppFEV1 ≥ 80% using race-specific compared to 67% using race-neutral spirometry. Children whose ppFEV1 changed to ≤ 80% with race-neutral spirometry had lower FEV1/FVC compared to those whose ppFEV1 remained ≥ 80% [0.83 (0.07) vs. 0.77 (0.05), respectively; p = 0.04], suggesting greater airway obstruction. Minimal changes in alignment of ppFEV1 with ACT score were observed for White children. CONCLUSIONS: Use of race-specific reference equations in Black children may increase the risk of inappropriately labeling asthma as controlled.

Adolescent asthma management self-efficacy and responsibility: impact on asthma control and quality-of-life.

OBJECTIVE: The purpose of this study was to investigate the extent to which adolescent asthma management self-efficacy, outcome expectations, and asthma responsibility were associated with asthma control and quality-of-life. Adolescent self-efficacy and outcome expectations are important components of social cognitive theory, which guided this research. METHODS: English- and Spanish-speaking adolescents ages 11-17 with persistent asthma were recruited at four pediatric clinics. Adolescents were interviewed and parents completed questionnaires. Multiple linear regression was used to analyze the data. RESULTS: Three hundred and fifty-nine adolescents were recruited. Older adolescent age, male gender, and higher adolescent asthma management self-efficacy were significantly associated with higher adolescent responsibility; outcome expectations were not significantly associated with responsibility. Adolescent ratings of their own responsibility were higher than parent ratings of their child's responsibility for almost all asthma management tasks. Adolescents with higher reported asthma management self-efficacy were significantly more likely to have better quality-of-life and controlled asthma. Adolescents with more positive outcome expectations were significantly more likely to have controlled asthma. Being Native American was associated with worse quality-of-life and asthma not being controlled. Being Black was associated with asthma not being controlled. CONCLUSIONS: Parents and providers should work to improve adolescent self-efficacy in managing their asthma because it is associated with asthma responsibility, asthma control, and quality-of-life. Providers need to especially work with Native American and Black adolescents to improve quality-of-life and asthma control.

Pediatric pulmonology 2021 year in review: Asthma.

Asthma is the most common chronic disease in children, affecting an estimated 6.1 million children in the United States. SARS-CoV2 had a significant impact on asthma exacerbations and healthcare utilization of patients with asthma in 2021. Additionally, studies in 2021 influenced the field of asthma with improvements in diagnostic testing and monitoring, treatment of severe exacerbations, social determinants of health, and evaluation of medical costs. This article is part of our 2021 "Year in Review" series, in which we summarize publications in major pulmonary topics, in the context of selected literature from other journals relevant to our discipline.

The E-cigarette or Vaping Product Use-Associated Lung Injury Epidemic: Pathogenesis, Management, and Future Directions: An Official American Thoracic Society Workshop Report.

E-cigarette or vaping product use-associated lung injury (EVALI) is a severe pulmonary illness associated with the use of e-cigarettes or vaping products that was officially identified and named in 2019. This American Thoracic Society workshop was convened in 2021 to identify and prioritize research and regulatory needs to adequately respond to the EVALI outbreak and to prevent similar instances of disease associated with e-cigarette or vaping product use. An interdisciplinary group of 26 experts in adult and pediatric clinical care, public health, regulatory oversight, and toxicology were convened for the workshop. Four major topics were examined: 1) the public health and regulatory response to EVALI; 2) EVALI clinical care; 3) mechanisms contributing to EVALI; and 4) needed actions to address the health effects of EVALI. Oral presentations and group discussion were the primary modes used to identify top priorities for addressing EVALI. Initiatives including a national EVALI case registry and biorepository, integrated electronic medical record coding system, U.S. Food and Drug Administration regulation and enforcement of nicotine e-cigarette standards, regulatory authority over nontobacco-derived e-cigarettes, training in evaluating exogenous exposures, prospective clinical studies, standardized clinical follow-up assessments, ability to more readily study effects of cannabinoid e-cigarettes, and research to identify biomarkers of exposure and disease were identified as critical needs. These initiatives will require substantial federal investment as well as changes to regulatory policy. Overall, the workshop identified the need to address the root causes of EVALI to prevent future outbreaks. An integrated approach from multiple perspectives is required, including public health; clinical, basic, and translational research; regulators; and users of e-cigarettes. Improving the public health response to reduce the risk of another substantial disease-inducing event depends on coordinated actions to better understand the inhalational toxicity of these products, informing the public of the risks, and developing and enforcing regulatory standards for all e-cigarettes.

Leveraging Telemedicine to Reduce the Financial Burden of Asthma Care.

One of the most compelling arguments for telemedicine is its potential to increase health care access by making care more affordable for patients and families, including those affected by asthma. This goal is critically important in the United States, where the high cost of asthma care is associated with nonadherence to preventive care regimens and suboptimal health outcomes. In this clinical commentary review, we draw from the literature and our own research to identify opportunities for and challenges to leveraging telemedicine to reduce the financial burden of asthma care. Our interviews with 42 families affected by asthma during the COVID-19 pandemic suggest that under favorable circumstances, telemedicine can meaningfully reduce costs, including those related to transportation and missed work, while offering high-quality care. However, families also identified ways in which telemedicine can increase costs. For example, some reported reduced access to support services and material resources such as medication samples, which they relied on to manage costs. In this way, our findings underscore the need for careful care coordination and communication in telemedicine. We conclude by discussing the 4Rs, a structured communication approach designed to support cost conversations, increase care coordination, and help families reduce asthma care cost burden.

Interstitial lung disease in children with Rubinstein-Taybi syndrome.

INTRODUCTION: Rubinstein-Taybi syndrome (RSTS) is a rare genetic syndrome caused primarily by a mutation in the CREBBP gene found on chromosome 16. Patients with RSTS are at greater risk for a variety of medical problems, including upper airway obstruction and aspiration. Childhood interstitial lung disease (ILD) thus far has not been definitively linked to RSTS. Here we present three patients with RSTS who developed ILD and discuss possible mechanisms by which a mutation in CREBBP may be involved in the development of ILD. METHODS: Routine hematoxylin and eosin staining was performed on lung biopsy tissue for histological analysis. Immunofluorescent staining was performed on lung biopsy tissue for markers of fibrosis, surfactant deficiency and histone acetylation. Cases 1 and 2 had standard clinical microarray analysis. Case 3 had whole exome sequencing. Bioinformatics analyses were performed to identify possible causative genes using ToppGene. RESULTS: Computed tomography images in all cases showed consolidated densities overlying ground glass opacities. Lung histopathology revealed accumulation of proteinaceous material within alveolar spaces, evidence of fibrosis, and increased alveolar macrophages. Immunofluorescent staining showed increase in surfactant protein C staining, patchy areas of increased anti-smooth muscle antibody staining, and increased staining for acetylated histone 2 and histone 3 lysine 9. DISCUSSION: Clinical characteristics, radiographic imaging, lung histopathology, and immunofluorescent staining results shared by all cases demonstrated findings consistent with ILD. Immunofluorescent staining suggests two possible mechanisms for the development of ILD: abnormal surfactant metabolism and/or persistent activation of myofibroblasts. These two pathways could be related to dysfunctional CREBBP protein.

Pediatric Pulmonology 2020 year in review: Asthma.

Pediatric asthma is a heterogeneous and common chronic condition with significant morbidity and burden on the healthcare system. Despite advances in the field, the disease has proven to be increasingly complex to diagnose and management strategies are constantly evolving. Studies from 2020 have advanced the field even further, particularly with regard to new methods of diagnosis and monitoring, treatment of severe asthma, modifiable risk factors like exercise and obesity, aerosol delivery, and viral respiratory infections contributing to the development of asthma. Continued studies are needed to improve our care for children with asthma and we look forward to future advances. This article is part of our 2020 "Year in Review" series, in which we summarize publications in major topic areas, in the context of selected literature from other journals relevant to our discipline.

Communication About Adolescent and Caregiver Smoking and Vaping During Pediatric Asthma Visits: Implications for Providers.

INTRODUCTION: Although rates of cigarette smoking among U.S. adolescents have declined, rates of vaping (i.e., using e-cigarettes) have increased. We conducted a secondary analysis of 359 transcripts of medical visits of adolescents with asthma to examine communication about caregiver and adolescent smoking and vaping. METHOD: Adolescents aged 11-17 years with persistent asthma and their parents were enrolled from four pediatric clinics in 2015-2017. Youth were randomized to the intervention or usual care groups. Intervention group adolescents watched a video and then completed an asthma question prompt list before their visits. RESULTS: Forty providers and 359 patients participated. Providers, adolescents, and caregivers discussed smoking during 38.2% of their visits. Vaping was never discussed. DISCUSSION: There is room to improve how often providers in a primary care setting discuss smoking and vaping. Further investigation might focus on how a smoking and vaping prompt list for adolescents could increase tobacco discussions during visits.

A Gut Feeling: Abdominal Symptoms as an Initial Presentation of EVALI.

Electronic cigarette or vaping product use-associated lung injury (EVALI) is a disease process that has become prevalent in the United States.1 The Centers for Disease Control and Prevention reported there have been almost 2700 cases of this condition in the United States as of January 14, 2020, with >50% of these patients aged ≤24.2 We present a 13-year-old boy with a history of functional abdominal pain who presented with recurrent episodes of nausea, emesis, periodic fevers, and severe episodic abdominal pain after a 12-month history of significant electronic cigarette use. On admission, he had severe abdominal pain and appeared anxious. A computed tomography scan of the abdomen was unremarkable, but a computed tomography scan of the chest demonstrated both multifocal ground-glass and crazy-paving pulmonary opacities bilaterally, with scattered septal thickening and dependent bibasilar opacities associated with volume loss. Inflammatory markers were significantly elevated, and cell counts were remarkable for leukocytosis and neutrophilia. The patient was ultimately diagnosed with EVALI and treated with intravenous methylprednisolone, resulting in improvement. This is an example of a case of EVALI in an adolescent, in which the presenting symptoms are largely gastrointestinal. It is important to keep EVALI in the differential diagnosis of patients who exhibit gastrointestinal symptoms, have markers of increased systemic inflammation, and endorse a history of vaping or are in the age range of electronic cigarette users. Although obtaining an accurate history of vaping can be challenging in the pediatric population, it is especially critical to do so.

Provider-adolescent discussion and provider education about asthma triggers during pediatric visits: results of a randomized trial.

OBJECTIVE: We examined how an asthma question prompt list with video intervention influenced discussion of and provider education about asthma triggers. METHODS: English or Spanish-speaking adolescents ages 11-17 with persistent asthma and their caregivers were enrolled from four pediatric clinics. Adolescents were randomized to the intervention or usual care groups. Adolescents in the intervention group watched the video on an iPad and then completed a one-page asthma question prompt list before their visits. All visits were audio-recorded. Generalized Estimating Equations were used to predict the number of trigger areas discussed and the number of areas providers educated adolescents about during visits. RESULTS: Forty providers and 359 patients participated. Triggers were discussed during 89% of intervention group visits and 81% of usual care visits; providers educated adolescents about triggers during 59% of intervention group visits and 46% of usual care visits. More triggers were significantly more likely to be discussed and providers educated about more trigger areas during visits of adolescents in the intervention group and when adolescents asked one or more questions during visits. More trigger areas were significantly more likely to be discussed if the adolescent was White and male. Providers were significantly more likely to educate adolescents whose family spoke Spanish at home about more trigger areas than adolescents who spoke English at home. CONCLUSIONS: More trigger areas were significantly more likely to be discussed and providers educated about more trigger areas during visits of adolescents who received the intervention and when adolescents asked one or more questions.

Community health worker case-detection of asthma or reactive airways disease in a resource-poor community in Nicaragua.

INTRODUCTION: Asthma is a major cause of morbidity and mortality in children worldwide, but many cases may remain undiagnosed. Community health worker (CHW) programs have improved detection of other diseases such as childhood pneumonia, but none have been validated for detection of asthma in resource-poor settings. We hypothesized that a CHW administered questionnaire would be effective in case-detection of asthma in a poor Nicaraguan community. METHODS: We enrolled children aged 2-17 from a small semiurban Nicaraguan community. A trained CHW administered a questionnaire based on a previously validated school-based screening questionnaire, which was compared to pediatric pulmonologist evaluation as a reference standard. We determined the questionnaire's sensitivity, specificity, and positive and negative likelihood ratios at different score cut-points. RESULTS: A total of 199 out of 218 eligible children were enrolled. Total asthma prevalence based on physician diagnosis was 33%. Mean scores on the CHW questionnaire were 3.6 points out of 22 (SD = 4.3) for nonasthmatics and 11.0 points (SD = 5.3) for children with asthma (p < .001). Area under the curve was 0.87. Multivariable analysis showed increased association of asthma/reactive airways disease with respiratory infection in the first 3 months of life and with family history of asthma. CONCLUSIONS: Prevalence of asthma in this community was high compared to previously reported national prevalence (15.2%), possibly due to increased exposure to risk factors. The questionnaire had a high area under the receiver operating characteristic curve, making it an excellent screening tool. This questionnaire could greatly increase the detection of asthma, allowing for education and referral for ongoing care.

Hemoglobin A1c and fructosamine correlate in a patient with sickle cell disease and diabetes on chronic transfusion therapy.

In patients with sickle cell disease (SCD) and diabetes mellitus (DM), hemoglobin A1c (HbA1c ) is unreliable and the American Diabetes Association recommends monitoring long-term glycemia by measuring serum glucose, but use of serum fructosamine (SF), a measurement independent of red cell lifespan, has been reported. SF as a screen for DM in SCD, however, is not standardized and its relationship to serum glucose has not been validated. Further, screening for DM was not adequately addressed in the 2014 National Heart, Lung, and Blood Institute (NHLBI) guidelines for SCD management. Blood transfusions, an important treatment for some patients with SCD, can also impact HbA1c . We present a case of a patient with SCD and cystic fibrosis-related diabetes on monthly chronic transfusions therapy (CTT) who had well-correlated "steady state" HbA1c and SF levels over time, suggesting for the first time these markers may actually be useful when following long-term glycemic control in patients with SCD on CTT programs.

Danger in the vapor? ECMO for adolescents with status asthmaticus after vaping.

Introduction: Electronic nicotine delivery systems (ENDS) use is on the rise in the adolescent and young adult populations, especially in the wake of sweet flavored ENDS solutions and youth-targeted marketing. While the extent of effect of ENDS use and aerosolized flavorings on airway epithelium is not known, there remains significant concern that use of ENDS adversely affects airway epithelial function, particularly in populations with asthma.Case Study: In this case series, we review two cases of adolescents with history of recent and past ENDS use and asthma who required veno-venous extracorporeal membrane oxygenation (VV-ECMO) for status asthmaticus in the year 2018.Results: Both patients experienced hypercarbic respiratory failure requiring VV-ECMO secondary to their status asthmaticus, with slow recovery on extensive bronchodilator and steroid regimens. They both recovered back to respiratory baseline and were counseled extensively on cessation of ENDS use.Conclusion: While direct causation by exposure to ENDS cannot be determined, exposure likely contributed to symptoms. Based on the severity of these cases and their potential relationship with ENDS use, we advocate for increased physician screening of adolescents for ENDS use, patient and parent education on the risks of use, and family cessation counseling.

The impact of a question prompt list and video intervention on teen asthma control and quality-of-life one year later: results of a randomized trial.

Objective: This study examined whether youth who received an asthma question prompt list/video intervention were more likely to have their asthma controlled and better quality-of-life at 12 months than youth who received usual care.Methods: English or Spanish-speaking youth ages 11-17 were enrolled and randomized to intervention or usual care. The 185 youth and parents in the intervention group watched the video on an iPad and then received a one-page asthma question prompt list to complete before their visits. One hundred seventy-four received usual care. Baseline and 6-month visits were audio-tape recorded. Generalized Estimating Equations were used to predict a youth's quality-of-life and whether asthma was controlled at 12 months.Results: Asthma control and quality-of-life improved significantly from baseline to 12-month follow-up in both intervention and usual care groups. Baseline asthma control and quality-of-life were significantly associated with 12-month asthma control and quality-of-life, respectively. Adolescents on a control medication at baseline were significantly more likely to have their asthma controlled at 12 months.Conclusions: Asthma control and quality-of-life did not improve significantly more in the intervention group than in the usual care group.

Questions and reported medication problems from pediatric patients and caregivers after intervention.

PURPOSE: The effectiveness of an asthma question prompt list with video intervention to increase question-asking during pediatric office visits among youth who reported medication problems was evaluated. METHODS: English- or Spanish-speaking youth age 11-17 years with persistent asthma and their caregivers were enrolled from 4 pediatric clinics in a randomized controlled trial. Youth were randomized to intervention or usual care groups. Youth in the intervention group watched an educational video with their caregivers on an iPad. The youth then received a 1-page asthma question prompt list to complete before their visits. The audio of all baseline medical visits was recorded. Youth were interviewed and caregivers completed questionnaires at baseline and 6 months later. RESULTS: A total of 40 providers and 359 of their patients participated. Youth who reported at least 1 medication problem who were in the intervention group were significantly more likely to ask 1 or more questions about medications during their visits than youth in the usual care group (odds ratio = 3.1, 95% confidence interval = 2.0, 4.1). Seventy-four percent of youth and 71% caregivers who reported the youth had problems using asthma medications at baseline still reported 1 or more problems 6 months later. CONCLUSION: Among youth who reported 1 or more problems with using their asthma medications, the intervention significantly increased youth question-asking. Many youth- and caregiver-reported problems with using asthma medications persisted over time.