Jaclyn Davis

Background: People with cystic fibrosis (PwCF) face considerable burden from medical expenses, medications, and daily living with a chronic disease. PwCF want to discuss financial challenges with their care team, although little is known about cystic fibrosis (CF) clinicians discussion practices. We described the current practices and perspectives of CF clinicians regarding cost and financial discussions. Methods: We administered a national, cross‐sectional, online survey to CF clinicians through CF Foundation listservs. Results: 192 respondents completed the survey and represented all multidisciplinary team members such as licensed practitioners, social workers, nurses, pharmacists, and other involved disciplines. Most respondents (80%) believed CF clinicians should discuss costs of medical care although less than half felt comfortable discussing cost. Social workers were more likely than licensed prescribers to discuss costs and feel comfortable with discussions. 52% of respondents reported having at least one conversation about the annual cost of CF medical care and 73% discussed out‐of‐pocket costs in the last year. Social workers were identified as the clinician that should be primarily responsible for discussing financial matters. Lack of time during visits (77%), lack of knowledge about topics (74%), and lack of clinician comfort (64%) were the most commonly identified barriers to discussions. Conclusions: Most CF clinicians believe that cost and financial discussions are important and reported engaging in these conversations with patients at least annually. Differences in comfort level and discussion practices were observed between social workers and licensed prescribers. Results demonstrate the opportunity for educational interventions to address clinician knowledge and improve comfort level with discussions.

Introduction.: Early diagnosis of cystic fibrosis (CF) leads to better outcomes. CF newborn screening occurs in the United States, and the ultimate diagnosis requires referral for sweat chloride testing (SCT), ideally within 28 days of life. At our center, 60% of CF newborn SCTs occurred outside the recommended window. Recognizing known differences in CF detection by newborn screen across race and ethnicity groups, we also identified a gap in understanding of potential inequities in SCT timeliness in our center. Methods.: We used the Model for Improvement to understand key drivers for late SCT, focusing on optimizing internal processes and partnership with primary care providers and patient families. We implemented iterative Plan-Do-Study-Act cycles to effect change. Additionally, we developed a tracking tool to evaluate timeliness by self-reported race, ethnicity, and primary language. Results.: We improved the rate of timely SCT from 40% to greater than 80% within the first project year, which was sustained over the subsequent year. We identified disparities in SCT timeliness by demographic characteristics, with those identified as Hispanic, Black, and multiracial having lower rates of timely SCT compared with those identified as White. There was a trend toward a lower rate of timely SCT in those speaking a non-English language as their primary language. Conclusions.: This work provided a framework for CF center–based improvement of the SCT process after an out-of-range CF screen, recognizing the importance of partnership with referring providers and understanding the patient voice. After uncovering disparities within our CF center, further work is needed to understand the drivers of these inequities and to develop and study solutions.

Introduction: Providing medical care by telehealth is increasingly common since its widespread adoption during the COVID‐19 pandemic. The optimal way to incorporate telehealth into existing care models is unknown. The goal of this study was to understand patient and caregiver experience with telehealth in a large pediatric pulmonary clinic following the COVID‐19 pandemic. We hypothesized there would be continued favorable perceptions given its convenience, though concerns around limited in‐person assessments may persist. Methods: This was a cross‐sectional survey study of patients and caregivers who attended a telehealth visit in our pediatric pulmonary clinic in 2023. Results: Of 992 eligible participants, 185 completed the survey (19% response rate). Seventy‐one percent reported their telehealth visit was more convenient than in‐person care and 95% felt telehealth was an acceptable alternative. Considering lack of in‐person assessments, including physical exam, vital signs, lung function testing, lab studies and imaging, 75% were not concerned, 21% felt somewhat concerned, and 4% felt very concerned. There was no difference in rates of concern by patient′s age, visit diagnosis or reason for visit. Considering future use, 94% of respondents reported they would use telehealth again in the future. Conclusions: Attendees of a telehealth visit at a single center pediatric pulmonary clinic report favorable experiences citing convenience, similar acceptability relative to in‐person care and a desire for continued access in the future. Concerns remain around limited in‐person assessments and further work is needed to understand for whom and in what capacity telehealth leads to optimal outcomes.

Background: The COVID‐19 pandemic ushered widespread adoption of telehealth (TH) by cystic fibrosis (CF) centers in the USA. TH was initially described as well‐accepted by both clinicians and patients. As we move past the unusual circumstances of the pandemic, the sustainability of TH remains untested. This study sought to test the durability of clinician perceptions of TH post‐pandemic. Methods: This is a cross‐sectional, survey study of clinicians at seven US CF centers. We refined a previously disseminated survey initially designed to assess clinician perceptions of TH in 2020. Survey results were analyzed using descriptive statistics and current responses were compared to prior results. Results: Clinician perceptions surrounding TH remain high but have changed over time with 75% now endorsing satisfaction (90% in 2020, p = 0.02). The most cited barriers were technology limitations (68%) and limited in‐person assessments (66%). We found a significant decrease in concern over missing in‐person assessments compared to 2020. Benefits of TH included convenience for patients and families (100%) and reduction in missed days of school or work (100%). In total, 83% of current respondents felt TH should remain part of routine CF care. A majority indicated certain patient characteristics increased their preference to conduct at least one TH visit per year. Conclusions: Despite restoration of full access to in‐person care, clinicians caring for pwCF continue to use TH across the surveyed CF centers post‐pandemic. Respondents continue to view TH favorably. Further study is needed to understand for which patient and clinical scenarios TH is most appropriate.

Objectives: The objective of this study was to study the performance of two available home spirometers used by people with Cystic Fibrosis (PwCF) over a short‐term period and to assess user experience.Study design: This was a prospective observational study. Participants age 6 years and older were recruited to participate if they could complete acceptable spirometry in the clinic setting.Methods: Participants used either the NuvoAir Air Next or the ZEPHYRx MIR Spirobank Smart spirometer. They underwent a one‐time virtual training session, then completed 2 weeks of daily spirometry followed by 2 months of weekly spirometry. Participants responded to surveys and completed a debrief interview to understand user experience. Statistical analyses examined feasibility, reliability, and accuracy of each spirometer in an unsupervised, real‐world setting.Results: We report high adherence (80% [95% CI 61%–92%]) to our study protocol in all session attempts, but lower rates of adherence after discarding sessions performed with inadequate technique (47% [95% CI 28%–66%] to 63% [95% CI 44%–80%]). We found high reliability of each device by analyzing day‐to‐day variability and good concordance to recent in‐clinic testing (NuvoAir r = 0.91 [0.82–0.93]; ZEPHYRx r = 0.70 [0.45–0.84]). Patient experience in this cohort was favorable with most reporting ease of use and reassurance knowing lung function was being tracked over time.Conclusions: This real‐world study showed good performance of two different available home spirometers used by children and adults with CF. While overall adherence was high, suboptimal technique reduced the total interpretable data, possibly limiting feasibility. Future work should focus on developing sustainable training and coaching programs to support the success of home spirometry in a CF chronic care model.

Introduction: Pediatric asthma affects 5.5 million US children and is the leading cause of pediatric chronic illness globally. Those with severe asthma have significantly higher healthcare costs compared to those with non-severe disease. Biologics are the newest class of anti-asthma therapy approved for use in patients with severe asthma > 6 years with the eosinophilic phenotype. Objective: The goals of this study were to (1) describe the baseline characteristics of new US pediatric mepolizumab users between 2015 and end dates that varied by data partner (6/30/19–5/31/21), (2) describe asthma medication use in the 12 months preceding and following mepolizumab initiation in this group and (3) assess adherence and persistence to mepolizumab in the 12 months following initiation. Methods: Through an observational cohort study using insurance claim databases, we studied children with a diagnosis of asthma in the preceding 12 months who started mepolizumab and had 12 months of follow-up data. Results: Baseline characteristics of the 72 children who initiated mepolizumab showed variable comorbidities, the most common being allergic rhinitis (88%) and recurrent respiratory infections (71%), as well as varied medication dispensings and patterns of healthcare utilization prior to initiating mepolizumab. Half met the criteria for severe asthma per the GINA guidelines. Comparing weighted averages of treatments dispensed in the 12 months prior to versus following mepolizumab initiation, we observed no significant change in asthma treatments dispensed. Conclusion: This study demonstrates that pediatric patients prescribed mepolizumab have variable previous treatment history and severity of disease, and we found no evidence that mepolizumab alters other asthma medications dispensed in the first 12 months following initiation.

OBJECTIVES: The coronavirus pandemic created significant, abrupt challenges to the delivery of ambulatory health care. Because tertiary medical centers limited elective in-person services, telehealth was rapidly enacted in settings with minimal previous experience to allow continued access to care. With this quality improvement (QI) initiative, we aimed to achieve a virtual visit volume of at least 75% of our prepandemic volume. We also describe patient and provider experience with telehealth services. METHODS: Our QI team identified the primary drivers contributing to low telehealth volume and developed a telehealth scheduling protocol and data tracking system using QI-based strategies. Patients and providers were surveyed on their telehealth experience. RESULTS: At the onset of the pandemic, weekly visit volume dropped by 65% (99 weekly visits; historical average of 281). Over the subsequent 3 weeks, using rapid Plan-Do-Study-Act cycles, we achieved our goal volume. In surveys, it was indicated that most participants had never before used telehealth (71% of patients; 82% of providers) yet reported high satisfaction (90% of patients; 81% of providers). Both groups expressed concern over the lack of in-person assessments. Most respondents were interested in future use of telehealth. CONCLUSIONS: With a QI-based approach, we successfully maintained access to care via telehealth services for pediatric pulmonary patients during the coronavirus pandemic and found high rates of satisfaction among patients and providers. Telehealth will likely continue to be a part of our health care delivery platform, expanding the reach of our services. Further work is needed to understand the effects on clinical outcomes.