ArticlePatient preference and adherence2012
What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives.
Article in Patient preference and adherence, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 2 of them syntheses that pooled it.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
34 citing papers in PubMed, 2 syntheses or guidelines pooled it, 82 citations in OpenAlex.
- Multidisciplinary care in Amyotrophic Lateral Sclerosis: a systematic review and meta-analysis.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2021Pooled it
- The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review.Palliative medicine · 2020Pooled it
- Foregrounding Communication Access in Person-Centred Decision Making for People with Motor Neurone Disease: A Narrative Review.Healthcare (Basel, Switzerland) · 2026Review
- How Patients With Amyotrophic Lateral Sclerosis Perceive Respiratory Interventions: A Mixed-Methods Study to Inform Implementation Efforts.Neurology. Clinical practice · 2025Article
- Pathophysiology, Clinical Heterogeneity, and Therapeutic Advances in Amyotrophic Lateral Sclerosis: A Comprehensive Review of Molecular Mechanisms, Diagnostic Challenges, and Multidisciplinary Management Strategies.Life (Basel, Switzerland) · 2025Review
- Patient Perspectives on Interdisciplinary Peripheral Nerve Trauma Care.Plastic surgery (Oakville, Ont.) · 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
- "…but I know something's not right here": Exploring the diagnosis and disclosure experiences of persons living with ALS.PloS one · 2024Article
- The complexity of multidisciplinary respiratory care in amyotrophic lateral sclerosis.Breathe (Sheffield, England) · 2023Review
- Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis.Health expectations : an international journal of public participation in health care and health policy · 2023Review
- Negotiating the Beginning of Care: A Grounded Theory Study of Health Services for Amyotrophic Lateral Sclerosis.Brain sciences · 2022Article
- Quality of life and mental health in the locked-in-state-differences between patients with amyotrophic lateral sclerosis and their next of kin.Journal of neurology · 2022Article
- Caregivers' View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis-How Can We Improve Holistic Care in ALS?Journal of clinical medicine · 2022Article
- Talking about the end of life: communication patterns in amyotrophic lateral sclerosis - a scoping review.Palliative care and social practice · 2022Article
- Oral hygiene in patients with motor neuron disease requires attention: A cross-sectional survey study.Special care in dentistry : official publication of the American Association of Hospital Dentists, the Academy of Dentistry for the Handicapped, and the American Society for Geriatric Dentistry · 2022Article
- Discussing Personalized Prognosis Empowers Patients with Amyotrophic Lateral Sclerosis to Regain Control over Their Future: A Qualitative Study.Brain sciences · 2021Article
- Discrete choice experiment for eliciting preference for health services for patients with ALS and their informal caregivers.BMC health services research · 2021Article
- Communication About End of Life for Patients Living With Amyotrophic Lateral Sclerosis: A Scoping Review of the Empirical Evidence.Frontiers in neurology · 2021Article
- Illness Cognitions in ALS: New Insights Into Clinical Management of Behavioural Symptoms.Frontiers in neurology · 2021Article
- Amyotrophic lateral sclerosis care in Saudi Arabia: A survey of providers' perceptions.Brain and behavior · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatients with amyotrophic lateral sclerosis (ALS) are required to make decisions concerning quality of life and symptom management over the course of their disease. Clinicians perceive that patients' ability to engage in timely decision-making is extremely challenging. However, we lack patient perspectives on this issue. This study aimed to explore patient experiences of ALS, and to identify factors influencing their decision-making in the specialized multidisciplinary care of ALS.
methodsAn exploratory study was conducted. Fourteen patients from two specialized ALS multidisciplinary clinics participated in semistructured interviews that were audio recorded and transcribed. Data were analyzed for emergent themes.
resultsDecision-making was influenced by three levels of factors, ie, structural, interactional, and personal. The structural factor was the decision-making environment of specialized multidisciplinary ALS clinics, which supported decision-making by providing patients with disease-specific information and specialized care planning. Interactional factors were the patient experiences of ALS, including patients' reaction to the diagnosis, response to deterioration, and engagement with the multidisciplinary ALS team. Personal factors were patients' personal philosophies, including their outlook on life, perceptions of control, and planning for the future. Patient approaches to decision-making reflected a focus on the present, rather than anticipating future progression of the disease and potential care needs.
conclusionDecision-making for symptom management and quality of life in ALS care is enhanced when the patient's personal philosophy is supported by collaborative relationships between the patient and the multidisciplinary ALS team. Patients valued the support provided by the multidisciplinary team; however, their focus on living in the present diverged from the efforts of health professionals to prepare patients and their carers for the future. The challenge facing health professionals is how best to engage each patient in decision-making for their future needs, to bridge this gap.
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