ABSTRACT
Background: People with cystic fibrosis (CF) are more likely to have anxiety and depression symptoms than the general population, with psychological distress being associated with negative health outcomes. The Cincinnati Children's Hospital Medical Center CF Center has been screening people with CF aged 12 and older since 2016 for anxiety and depressive symptoms. Little is known about longitudinal mental health trends for youth with CF, especially during the COVID-19 pandemic. Method(s): Chart review was conducted for individuals aged 12 and older seen for routine care at our center with at least one General Anxiety Disorder (GAD-7) or Patient Health Questionnaire (PHQ-9) screening result between January 2016 and December 2021. Data included demographic characteristics;dates and scores of GAD-7 and PHQ-9;mental health encounters 12 months before each screening date;and clinical variables of disease severity, including percentage predicted forced expiratory volume in 1 second (FEV1pp), body mass index, CF-related diabetes (CFRD), antibiotics in the 28 days prior, and exacerbations in the 12 months prior. Descriptive statistics were used to summarize demographic variables, logistic regression and linear mixed modeling were used to identify predictive relationships, and t-testswere used to compare impact of COVID with that of prior years. Result(s): The sample included 150 individuals with at least one screen across the 6 years. An average of 83 people completed at least one GAD-7 or PHQ-9 in each year. Across the 6-year time period, the percentage of individuals with low scores increased, and the percentage of people with moderate to severe scores was stable (Figure 1). Approximately 35% of individuals were rescreened at least once in a given year because of a previously high symptom score. For thosewho screened in the moderate to severe range (>=10) on initial screens per year, an average of 32% (GAD-7) and 37% (PHQ-9) had a lower score (<10) on their second screen per year. Individuals who scored 10 or higher on initial GAD-7 or PHQ-9 screens in any year were statistically more likely to have a CFRD diagnosis ( p = 0.02, GAD-7;p = 0.02, PHQ-9) and more psychology or psychiatry visits 12 months before the screening date ( p < 0.01, GAD-7;p < 0.01, PHQ-9) than those with minimal scores. In addition, PHQ-9 scores of 10 or greater were significantly associated with lower FEV1pp than low scores. Adherence to screening protocols consistently increased over time. Of all eligible individuals, 56% completed a GAD-7 and 55% a PHQ-9 in 2016, increasing to 92% and 94%, respectively, by 2021, despite the impact of the COVID-19 pandemic on CF care visit frequency. GAD-7 scores were not significantly different before COVID and during COVID ( p = 0.06);PHQ-9 scores were higher before than during COVID ( p = 0.02) despite similar numbers of screens conducted per year. (Figure Presented)Figure 1. Percentage of initial Patient Health Questionnaire (PHQ-9) and General Anxiety Disorder (GAD-7) scores per year from 2016 to 2021 of people with cystic fibrosis seen at Cincinnati Children's Hospital Medical Center Conclusion(s): These longitudinal trends in mental health symptom scores over time are reassuring,with increasing frequency of lowscores and stable moderate to severe scores. This may be because of greater awareness of mental health symptoms, more interventions through care teams, or improved access to resources. Similarly, although general population data suggest worsening of anxiety and depressive symptoms during the COVID- 19 pandemic, we hypothesize thatwewere able to buffer the impact of the pandemic on mental health in our center by screening and responding to screens. These results highlight the importance of consistent monitoring and support for mental health symptoms in people with CFCopyright © 2022, European Cystic Fibrosis Society. All rights reserved
ABSTRACT
Background: Assessment of the prevalence and correlates of educational risk and school support needs of children with cystic fibrosis (CF) is limited. Educational support for people with CF has become even more pressing with the onset of COVID-19 and the dramatic changes seen in the education system nationally. Method(s): A cross-sectional needs assessment survey for pediatric and adult CF center care team members across the United States was distributed to assess student and family school needs, resources, services offered, and current processes for identification of concerns and intervention. Care teams were asked to complete the survey as a group or specify respondents who routinely provide school support. Result(s): The survey was sent to 3684 individuals within the CF care center network, on April 1, 2022, with a closure date of April 22, 2022. Preliminary results at time of this submission include 56 survey responses, completed primarily by social workers (40%) and physicians (23%), representing approximately 20% of all centers. Thirty-eight percent of respondents reported that their center administered a screening tool to assess general school functioning routinely or as needed. Specific school topics most widely assessed included need for CF care (treatments and medications) to occur at school (73%), concerns about emotional and behavioral functioning in the school setting (70%), CF daily care burden affecting school attendance and performance (63%), and CF-specific needs in university settings (63%). According to the care team report, families most often asked for help with school accommodations related to ability to carry enzymes (74%), carrying awater bottle (50%), additional bathroom passes (43%), and ability to step out of the classroom as needed for gastrointestinal problems (50%). Nurses, program coordinators, and social workers are the team members addressing school needs most often (55%, 42%, and 90%, respectively). Sixty-two percent of respondents reported having access to a hospital-based teacher for education support during inpatient stays, 10% had access to school services or educational support, and 5% had access to someone with a background or training in education or teaching (other than hospital-based teacher) for ambulatory care. Upon closure of the survey, the above data will be updated, and more complete identification of current resources and future needs will be described at the 2022 North American Cystic Fibrosis Conference. Conclusion(s): This survey will be the most comprehensive assessment to date of ongoing school services at CF centers nationally. Results will be used to identify specific areas of need to guide development of a roadmap addressing proactive monitoring of school functioning and resources in the CF care modelCopyright © 2022, European Cystic Fibrosis Society. All rights reserved