title: Estimating and communicating prognosis in advanced neurologic disease.
abstract: Prognosis can no longer be relegated behind diagnosis and therapy in high-quality neurologic care. High-stakes decisions that patients (or their surrogates) make often rest upon perceptions and beliefs about prognosis, many of which are poorly informed. The new science of prognostication--the estimating and communication "what to expect"--is in its infancy and the evidence base to support "best practices" is lacking. We propose a framework for formulating a prediction and communicating "what to expect" with patients, families, and surrogates in the context of common neurologic illnesses. Because neurologic disease affects function as much as survival, we specifically address 2 important prognostic questions: "How long?" and "How well?" We provide a summary of prognostic information and highlight key points when tailoring a prognosis for common neurologic diseases. We discuss the challenges of managing prognostic uncertainty, balancing hope and realism, and ways to effectively engage surrogate decision-makers. We also describe what is known about the nocebo effects and the self-fulfilling prophecy when communicating prognoses. There is an urgent need to establish research and educational priorities to build a credible evidence base to support best practices, improve communication skills, and optimize decision-making. Confronting the challenges of prognosis is necessary to fulfill the promise of delivering high-quality, patient-centered care.
authors: Departments of Neurology and Community and Preventive Medicine, University of Rochester, NY, USA. robert_holloway@urmc.rochester.edu
authors: Robert G
authors: RG
authors: Holloway
authors: Robert
authors: R
authors: Gramling
authors: Adam G
authors: AG
authors: Kelly
mesh_terms: D006801:Humans; D009422:Nervous System Diseases; D018802:Patient-Centered Care / Q000379:methods; D010817:Physician-Patient Relations; D011379:Prognosis