Factors associated with receiving CF care and use of telehealth in 2020 among persons with Cystic Fibrosis in the United States.

BACKGROUND: The COVID-19 pandemic resulted in the use of telehealth to deliver the cystic fibrosis (CF) care model, which recommends routine follow-up for monitoring of nutritional status, bacterial culture surveillance, pulmonary function testing, and screening for CF-related complications such as diabetes or osteoporosis. METHODS: The objective of this study was to use Cystic Fibrosis Foundation Patient Registry (CFFPR) data to quantify the extent to which persons with CF received the recommended components of the care model in 2019 versus 2020. A risk factor analysis was implemented to identify patient characteristics associated with attaining the recommended CF care and use of any telehealth using multivariable logistic regression. RESULTS: A total of 28,132 CFFPR participants were included in the study. The proportion of individuals meeting the recommendations for CF care was lower in 2020 for every indicator, and lower in adults compared to children. In adults, demographic, socioeconomic and CF-related disease covariates were significantly associated with both achieving an aggregate level of care and use of telehealth. In the pediatric population, minority race/ethnicity and markers of lower socioeconomic status were associated with a lower odds of telehealth use. In all analyses, having received the recommended level of care in 2019 was associated with a higher odds of both reported telehealth use and achieving the recommended elements of the CF care model in 2020. CONCLUSION: Fewer participants met recommendations for care in 2020 despite widespread use of telehealth, and use of telehealth did not equate to adherence to all aspects of CF care.

Social Isolation Among Adults Living With Cystic Fibrosis in the United States: A Single-Center Experience

Adults with cystic fibrosis face challenges that may increase social isolation. The goal of this cross-sectional study was to describe social isolation in this population. Participants (N = 34) were recruited from an adult cystic fibrosis clinic. Demographic and clinical data, social isolation scores, coronavirus disease 2019 effects, and quality of life outcomes were collected and compared to describe social isolation. Significant social effects were not found in this group, but preliminary data reveal potential predictors of social isolation. This study provides insight into the predictors of social isolation among adults with cystic fibrosis and lays the groundwork for future studies. © 2023 Elsevier Inc.

Depression, anxiety, and quality of life in patients with nontuberculous mycobacterial pulmonary disease (NTM-PD) in the southeastern United States

RATIONALE. Nontuberculous mycobacterial pulmonary disease (NTM-PD) has a high treatment burden, long treatment duration, and side effects that can impact quality of life (QOL). Anxiety and depression can be seen in NTM-PD patients, with prevalence of depression ranging 26-38% in patients with NTM-PD in Japan (Kakuta et al, 2020). The NTM Research Consortium has placed a priority on management of mental health challenges for patients with NTM-PD (Henkle et al., 2016). We aimed to describe and explore associations between depression, anxiety, QOL and other aspects of mental health for patients with NTM-PD in a multidisciplinary NTM clinical program. METHODS. During NTM clinic visits, patients completed the Patient Health Questionnaire-8 and Generalized Anxiety Questionnaire-7 to assess depression and anxiety, and were asked questions about current mental health treatment. Those with elevated mental health scores were referred for intervention by the team psychologist. Patients also completed the PROMIS single-item general self-rated health question (1 “Poor” to 5 “Excellent”;Hays et al., 2015), and a single-item QOL question, based on the CF-QOL (0 “Worst” to 10 “Best” in the past 2 weeks;Yohannes et al., 2011). Descriptive and correlational statistics were utilized. RESULTS. Patients with NTM-PD who completed screening (N = 50) were 66.6±9.4 years old (Table 1). Fifty-six percent had elevated (≥5) depression symptoms and 32% had elevated anxiety symptoms. Fifty percent (n = 25) of patients were on psychiatric medications at the time of screening, and 32% (n = 16) were taking medication to manage pain;only 6.0% (n = 3) were engaged in counseling/psychotherapy. Higher depression scores were significantly associated with lower perceptions of QOL (r =-.321, p = .025) and worse perceived general health (r =-.565, p < .001). Similarly, higher anxiety scores were significantly associated with lower perceptions of QOL (r =-.301, p = .035) and worse perceived general health (r =-.342, p = .016). CONCLUSIONS. A substantial proportion of patients with NTM-PD in our program experience depression and anxiety symptoms;these symptoms may affect treatment course, and therefore should be an area of focus. Optimization of quality of life and perceptions of health for patients with NTM-PD may benefit from incorporation of treatment of co-occurring mental health symptoms. Limitations of this QI project are our small, albeit growing, group of patients we have been able to screen during COVID-19, and need for tracking of mental health outcomes as they pertain to treatment/health outcomes.