Priorities and Recommendations to Make ALS a Livable Disease Emanating from the 2024 National Academies of Sciences, Engineering, and Medicine Report Living with ALS.

Amyotrophic lateral sclerosis (ALS) is a relentless, fatal neurodegenerative disease. The progressive loss of voluntary muscle function, diagnostic delays, lack of effective treatments, and challenges accessing multidisciplinary care and resources have tremendous impact on quality of life. The congressionally directed ALS committee of the National Academies of Science, Engineering, and Medicine, in their 2024 report "Living with ALS," recommends critical actions for specific United States stakeholders to make ALS a livable disease over the next decade.

Neuroprognostication for Patients with Amyotrophic Lateral Sclerosis: An Updated, Evidence-Based Review.

Amyotrophic lateral sclerosis (ALS) is a rapidly progressive neurodegenerative disorder that presents and progresses in various ways, making prognostication difficult. Several paradigms exist for providers to elucidate prognosis in a way that addresses not only the amount of time a patient has to live, but also a patient's quality of their life moving forward. Prognostication, with regard to both survivability and quality of life, is impacted by several features that include, but are not limited to, patient demographics, clinical features on presentation, and over time, access to therapy, and access to multidisciplinary clinics.

Lack of concordance between physician and patient: reports on end-of-life care discussions.

Objective: To study the effectiveness of patient physician communications regarding health care choices at the end of life. We studied communications occurring between physicians and their patients who had either terminal cancer or congestive heart failure, with less than 6 months to live.

Methods: This pilot study used in-person interviews with 22 physicians and 71 of their (matched) patients.

Care at the end of life: focus on communication and race.

Objective: To profile communication and recommendations reported by adults with terminal illness and explore differences by patient and physician characteristics.

Method: This pilot was a cross-sectional study sample of 90 patients (39 Caucasian, 51 African American) with advanced heart failure or cancer. Participants completed an in-person, race-matched interview.

End-of-life care and African Americans: voices from the community.

Background: In 1997, the Institute of Medicine called for reform, improved quality and expanded research in end-of-life care. Yet little empirical information about preferences of African Americans has been documented. A community-campus partnership was formed to guide a needs assessment related to end-of-life care in a Southern, urban, African American community.