ArticleBrain sciences2021
Discussing Personalized Prognosis Empowers Patients with Amyotrophic Lateral Sclerosis to Regain Control over Their Future: A Qualitative Study.
Article in Brain sciences, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.
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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
10 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Advance directives in amyotrophic lateral sclerosis - a systematic review and meta-analysis.BMC palliative care · 2024Pooled it
- Developing prognostic models that predict onset and progression rates in genetic neurodegenerative diseases: perspectives of healthcare professionals in genetic counselling.Orphanet journal of rare diseases · 2026Article
- Predicting rates of cognitive and functional decline in Alzheimer's disease and mild cognitive impairment.Communications medicine · 2026Article
- Development and validation of predictive models for 6-month gastrostomy timing in amyotrophic lateral sclerosis.BMJ neurology open · 2026Article
- Exploring mutation carriers' preferences regarding onset and progression of disease predictions for adult-onset genetic neurodegenerative diseases: a qualitative interview study.Human genetics · 2025Article
- Prognostic communication in amyotrophic lateral sclerosis: findings from a Nationwide Italian survey.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2024Article
- The complexity of multidisciplinary respiratory care in amyotrophic lateral sclerosis.Breathe (Sheffield, England) · 2023Review
- Perry Disease: Expanding the Genetic Basis.Movement disorders clinical practice · 2023Article
- Serum Neurofilaments in Motor Neuron Disease and Their Utility in Differentiating ALS, PMA and PLS.Life (Basel, Switzerland) · 2023Article
- Review
Corrections and comments
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Authors and funding
9 authors.
Funding
Abstract
The ENCALS survival prediction model offers patients with amyotrophic lateral sclerosis (ALS) the opportunity to receive a personalized prognosis of survival at the time of diagnosis. We explored experiences of patients with ALS, caregivers, and physicians with discussing personalized prognosis through interviews with patients and their caregivers, and in a focus group of physicians. Thematic analysis revealed four themes with seven subthemes; these were recognized by the focus group. First, tailored communication: physician's communication style and information provision mediated emotional impact and increased satisfaction with communication. Second, personal factors: coping style, illness experiences, and information needs affected patient and caregiver coping with the prognosis. Third, emotional impact ranged from happy and reassuring to regret. Fourth, regaining control over the future: participants found it helpful in looking towards the future, and emphasized the importance of quality over quantity of life. Personalized prognosis can be discussed with minimal adverse emotional impact. How it is communicated-i.e., tailored to individual needs-is as important as what is communicated-i.e., a good or poor prognosis. Discussing personalized prognosis may help patients with ALS and their caregivers regain control over the future and facilitate planning of the future (care). For many patients, quality of life matters more than quantity of time remaining.
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