ArticleNeurology. Clinical practice2022
Embedded Palliative Care for Amyotrophic Lateral Sclerosis: A Pilot Program and Lessons Learned.
Article in Neurology. Clinical practice, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
13 citing papers in PubMed.
- Palliative Care Involvement in Hospitalized Amyotrophic Lateral Sclerosis Patients.International journal of environmental research and public health · 2026Article
- Support interventions for families facing parental life-threatening illness - A scoping review.Palliative & supportive care · 2026Article
- Approaching Serious Illness Conversations in Amyotrophic Lateral Sclerosis Using Telehealth: A Practical Guide.Neurology. Clinical practice · 2026Review
- Disease trajectories and end of life care in a Norwegian ALS cohort.BMC neurology · 2026Article
- Strengths and Opportunities: Clinicians' Perspectives on Palliative Care for Amyotrophic Lateral Sclerosis (ALS) in the United States.Muscle & nerve · 2025Article
- Characteristics and Motivations of People With Amyotrophic Lateral Sclerosis Who Pursue Medical Aid in Dying in California.Neurology. Clinical practice · 2025Article
- Associations Between End-Stage ALS Care and Specialty Palliative Care: A Hypothesis-Generating Study.Muscle & nerve · 2025Article
- Top Ten Tips Palliative Care Clinicians Should Know About Providing Care for People With Disabilities.Journal of palliative medicine · 2024Article
- Chimeric Cell Therapies as a Novel Approach for Duchenne Muscular Dystrophy (DMD) and Muscle Regeneration.Biomolecules · 2024Review
- Top Ten Tips Palliative Care Clinicians Should Know About Delivering Specialty-Aligned Palliative Care.Journal of palliative medicine · 2023Article
- The complexity of multidisciplinary respiratory care in amyotrophic lateral sclerosis.Breathe (Sheffield, England) · 2023Review
- Respiratory support effect on pharyngeal area in patients with amyotrophic lateral sclerosis: A fluoroscopic comparison of NIV, helmet/CPAP, and high-flow nasal cannula.Respiratory medicine case reports · 2023Article
- Transformed Parenthood in the Face of ALS: A Profound Struggle for Both Ill Parents and Co-parents.Global qualitative nursing researchArticle
Corrections and comments
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background and Objectives: Palliative care (PC) is recommended for people with amyotrophic lateral sclerosis (ALS), but there is scant literature about how to best provide this care. We describe the structure and impact of a pilot program that integrates longitudinal, interdisciplinary PC into the care of patients with ALS. Methods: Observational cohort study of patients with ALS referred to outpatient PC and seen for at least 3 PC visits October 2017-July 2020. Results: Fifty-five patients met the inclusion criteria. Three-quarters (74.5%) were Caucasian, and 78.2% spoke English. Patients were referred for advance care planning (58.2%), support for patient/family (52.7%), and symptoms other than pain (50.9%). Patients had a mean of 5 scheduled PC visits, the majority occurred by video. A PC physician, nurse, social worker, and chaplain addressed pain (for 43.6% of patients), nonpain symptoms (94.5%), psychosocial distress (78.2%), spiritual concerns (29.1%), care planning (96.4%), and supported family caregivers (96.4%). With PC, the rate of completion of advance directives increased from 16.4% to 36.4% ( Discussion: Integrating longitudinal, interdisciplinary PC into the care of patients with ALS is feasible, addresses needs in multiple domains, and is associated with increased rates of advance care planning. Controlled studies are needed to further elucidate the impact of PC on patients with ALS, their families, and clinicians.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.