Discussing personalized prognosis in amyotrophic lateral sclerosis: development of a communication guide
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RESEARCH ARTICLE
Open Access
Discussing personalized prognosis in amyotrophic lateral sclerosis: development of a communication guide Remko M. van Eenennaam1,2,3, Willeke J. Kruithof1,2, Michael A. van Es3, Esther T. Kruitwagen-van Reenen1,2, Henk-Jan Westeneng3, Johanna M. A. Visser-Meily1,2, Leonard H. van den Berg3 and Anita Beelen1,2*
Abstract Background: 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. Methods: A multidisciplinary working group of neurologists, rehabilitation physicians, and healthcare researchers A) identified relevant topics for guidance, B) conducted a systematic review on needs of patients regarding prognostic discussion in life-limiting disease, C) drafted recommendations based on evidence and expert opinion, and refined and finalized these recommendations in consensus rounds, based on feedback of an expert advisory panel (patients, family member, ethicist, and spiritual counsellor). Results: A) Topics identified for guidance were 1) filling in the ENCALS survival model, and interpreting outcomes and uncertainty, and 2) tailoring discussion to individual needs and preferences of patients (information needs, role and needs of family, severe cognitive impairment or frontotemporal dementia, and non-western patients). B) 17 studies were included in the systematic review. C) Consensus procedures on drafted recommendations focused on selection of outcomes, uncertainty about estimated survival, culturally sensitive communication, and lack of decisional capacity. Recommendations for discussing the prognosis include the following: discuss prognosis based on the prognostic groups and their median survival, or, if more precise information is desired, on the interquartile range of the survival probability. Investigate needs and preferences of the patients and their families for prognostic disclosure, regardless of cultural background. If the patient does not want to know their prognosis, with patient permission discuss the prognosis with their family. If the patient is judged to lack decisional capacity, ask the family if they want to discuss (Continued on next page)
* Correspondence: [email protected] 1 Department of Rehabilitation, Physical Therapy Science & Sports, UMC Utrecht Brain Center, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX Utrecht, the Netherlands 2 Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht, and De Hoogstraat Rehabilitation, Utrecht, the Netherlands Full list of author information is available at the end of the artic
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