An evaluation of healthcare utilization and clinical charges in children and adults with cystic fibrosis.

BACKGROUND: Prior studies have estimated healthcare costs for cystic fibrosis (CF) of $8000-$131,000, but do not account for impacts of CF modulator therapy. This study aims to assess utilization patterns and cost of CF care in a center in the United States. METHODS: Care utilization patterns and costs at a large pediatric-adult CF center were examined from November 2017 to November 2018. Subjects were stratified by age and cost (excluding pharmacy costs) were calculated based on hospital-derived utilization charges. RESULTS: A total of 166 patients were reviewed with mean clinical charges of $28,755. Lower lung function ($23,032 normal lung function, $62,293 moderate reduction, $186,786 severe reduction; p = .05), hospitalizations ($85,452 yes, $6362 no; p = .0001), Pseudomonas positive culture ($48,660 positive, $22,013 negative, p = .0001), and CF-related diabetes ($161,892 CFRD, $22,153 no CFRD; p = .001) were associated with increased charges. Patients utilizing Ivacaftor had lower charges compared to lumacaftor-ivacaftor ($6633 vs. $33,039; p = .05) and tezacaftor-ivacaftor ($6633 vs. $64,434; p = .002). CONCLUSION: Our study characterized utilization and care charges among a CF cohort. Lower lung function, hospitalizations, and CFRD were associated with increased charges.

Perceptions of Social Media Use to Augment Health Care Among Adolescents and Young Adults With Cystic Fibrosis: Survey Study.

BACKGROUND: For individuals with cystic fibrosis (CF), adolescence and young adulthood are times of significant vulnerability and have been associated with clinical and psychosocial challenges. Social media may offer innovative care delivery solutions to address these challenges. OBJECTIVE: This study explored motivations and attitudes regarding current social media use and preferences for a social media platform in a sample of adolescents and young adults (AYA) with CF. METHODS: A cross-sectional survey was administered to 50 AYA with CF followed at a large pediatric-adult CF center. The survey included questions regarding social media platform utilization, attitudes toward general and CF-specific online activities, and preferences for a CF-specific care delivery platform. RESULTS: YouTube, Snapchat, and Instagram were the most commonly used social media platforms. AYA with CF do not report routinely using social media for health-related information acquisition, social support, or help with adherence. However, their perceptions of social media utilization and preferences for platform development suggest interest in doing so in the future. CONCLUSIONS: AYA with CF use social media and expressed interest in the development of a social media platform. Platform development will allow for gaps in health care delivery to be addressed by improving social support and adherence while augmenting current methods of health information acquisition.