• Rachel W Linnemann, Deborah Friedman, Lily L Altstein, Suhayla Islam, Kieu-Tram Bach, Anna M Georgiopoulos, Samuel M Moskowitz, and Lael M Yonker.
• 1 Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts.
• J Palliat Med. 2019 Feb 1; 22 (2): 138-144.

BackgroundAdvance care planning (ACP) is recommended for people with cystic fibrosis (CF), yet guidance for optimal implementation is lacking.ObjectiveTo assess ACP-related thoughts, comfort level, and preferences among people with CF to guide evidence-based routine implementation of ACP in the CF clinic.DesignA cross-sectional survey assessed ACP-related experiences and preferences.SubjectsThirty-eight adolescents and adults with CF from an urban CF center.ResultsFew subjects reported talking to their CF team about ACP care preferences (5%) or completing advance directives detailing desired medical treatments (11%). However, most participants worried about living with advanced disease (84%) and felt comfortable discussing ACP preferences with CF providers (92%). Subjects largely preferred that ACP conversations occur when they are generally healthy, in the outpatient setting, and with any familiar CF team member. Disease severity was not associated with frequency of worry about living with advanced disease, comfort level with ACP discussions, or ACP setting preferences.ConclusionsPeople with CF worry about advanced disease and feel comfortable discussing ACP, but need more guidance to understand and document ACP choices. CF patient experiences and preferences support implementation of an early, active approach to ACP for people with CF.

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