TY - JOUR AU - van Eenennaam, Remko M. AU - Kruithof, Willeke J. AU - van Es, Michael A. AU - Kruitwagen-van Reenen, Esther T. AU - Westeneng, Henk-Jan AU - Visser-Meily, Johanna M. A. AU - van den Berg, Leonard H. AU - Beelen, Anita PY - 2020 DA - 2020/12/14 TI - Discussing personalized prognosis in amyotrophic lateral sclerosis: development of a communication guide JO - BMC Neurology SP - 446 VL - 20 IS - 1 AB - Personalized ENCALS survival prediction model reliably estimates the personalized prognosis of patients with amyotrophic lateral sclerosis. Concerns were raised on discussing personalized prognosis without causing anxiety and destroying hope. Tailoring communication to patient readiness and patient needs mediates the impact of prognostic disclosure. We developed a communication guide to support physicians in discussing personalized prognosis tailored to individual needs and preferences of people with ALS and their families. SN - 1471-2377 UR - https://doi.org/10.1186/s12883-020-02004-8 DO - 10.1186/s12883-020-02004-8 ID - van Eenennaam2020 ER -