Cystic fibrosis (CF) affects more than 70,000 individuals and their families worldwide. Although outcomes for individuals with CF continue to improve, it remains a life-limiting condition with no cure. Individuals with CF manage extensive symptom and treatment burdens and face complex medical decisions throughout the illness course. Although palliative care has been shown to reduce suffering by alleviating illness-related burdens for people with serious illness and their families, little is known regarding the components and structure of various delivery models of palliative care needed to improve outcomes for people affected by CF. The Cystic Fibrosis Foundation (CFF) assembled an expert panel of clinicians, researchers, individuals with CF, and family caregivers, to develop consensus recommendations for models of best practices for palliative care in CF. Eleven statements were developed based on a systematic literature review and expert opinion, and address primary palliative care, specialty palliative care, and screening for palliative needs. These recommendations are intended to comprehensively address palliative care needs and improve quality of life for individuals with CF at all stages of illness and development, and their caregivers.

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In order for people with advanced Cystic Fibrosis (CF) to engage in advance care planning (ACP) about lung transplant and invasive mechanical ventilation (IMV), we designed the InformedChoices decision aid (DA) website.1 Herein, we present results of our DA feasibility study. METHODS: Adults with advanced CF (FEV1<40%), their surrogates and CF clinicians were enrolled in a multi-site study with 2 time points (T1/T2). At T1, patients completed surveys and viewed the DA with a clinician. 1 month later (T2), patients returned with a surrogate, completed surveys, and had an in-depth ACP discussion with a clinician using the DA. Patients also used the DA at home between visits. We assessed: changes in patient knowledge and decisional conflict at T1 and before/after T2, and feasibility and acceptability of the decision for patients, surrogates and clinicians post T2.