Key priorities in mental health research: results of a community and provider survey across the US

ABSTRACT

Objectives: Integrating mental health screening and treatment into cystic fibrosis (CF) centres has led to numerous successes increased awareness, reduced stigma and greater access to mental health care (Quittner et al., 2020). Given that anxiety and depression screening are now part of routine care, the major aim was to identify the most important, future research priorities in mental health. Method: A 22-item online survey was sent out July 2020 to people with CF (pwCF), caregivers, and US providers in the CF community, who were given 3 weeks to respond. Questions focused on ranking topics by importance and impact, identifying gaps in our understanding of mental health issues, and priorities and needs during COVID-19. Results: Response time was 7–11 minutes, with 693 community respondents (half pwCF, majority ages 26–45 years) and 352 CF clinicians (mainly social workers, center directors). Substantial agreement was found between community respondents and providers on the top 5 priorities1) anxiety, 2) depression, 3) effects of psychological symptoms on physical health, 4) risk factors for anxiety/depression, and 5) effects on family functioning and parenting. Although ranked highly, differences emerged for substance misuse and disordered eating, with higher rankings endorsed by providers than community respondents. Priorities for improving outcomes were also similar 1) greater access to mental health providers and 2) improving mental health interventions. Conclusion: A large-scale survey of CF community members and providers revealed clear consensus on the top research priorities. In addition to increased understanding of anxiety and depression (e.g., risk factors, long-term effects), new topics emerged, including substance misuse, disordered eating, and interactions between medications and mental health (e.g., modulators). Acknowledgement Cystic Fibrosis Foundation