ArticleCerebellum (London, England)2022
Quality of Life Changes Following the Onset of Cerebellar Ataxia: Symptoms and Concerns Self-reported by Ataxia Patients and Informants.
Article in Cerebellum (London, England), 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.
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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, 1 synthesis or guideline pooled it.
- Patient-Related Outcome Measures for Oculomotor Symptoms in the Cerebellar Ataxias: Insights from Non-Cerebellar Disorders.Cerebellum (London, England) · 2024Pooled it
- Effect of a Home-Base Core Stability Exercises in Hereditary Ataxia. A Randomized Controlled Trial. A Pilot Randomized Controlled Trial.Movement disorders clinical practice · 2024Trial
- Modulating mental state recognition by anodal tDCS over the cerebellum.Scientific reports · 2022Trial
- A Feasibility Study of Real-Time FMRI with Neurofeedback of Motor Performance in Cerebellar Ataxia.Brain sciences · 2026Article
- Impact of rehabilitation on quality of life in patients with degenerative cerebellar ataxias using structural equation modeling.Scientific reports · 2025Article
- The impact of neurological and cerebellar soft signs on psychosocial functioning in bipolar disorder.Frontiers in psychiatry · 2025Article
- Quantitative Gait and Balance Outcomes for Ataxia Trials: Consensus Recommendations by the Ataxia Global Initiative Working Group on Digital-Motor Biomarkers.Cerebellum (London, England) · 2024Review
- Health-Related Quality of Life in Patients with Inherited Ataxia in Ireland.Cerebellum (London, England) · 2024Article
- Patients' Perspective in Hereditary Ataxia.Cerebellum (London, England) · 2024Article
- Virtual reality assessment of reaching accuracy in patients with recent cerebellar stroke.BMC digital health · 2024Article
- Quantitative susceptibility mapping of basal ganglia iron is associated with cognitive and motor functions that distinguish spinocerebellar ataxia type 6 and type 3.Frontiers in neuroscience · 2022Article
- Anticipation strategies of motor control in children and adolescents with cerebellar pathologies and typical development: a dual task paradigm.Frontiers in neurologyArticle
- Understanding dentatorubral-pallidoluysian atrophy (DRPLA) symptoms and impacts on daily life: a qualitative interview study with patients and caregivers.Therapeutic advances in rare diseaseArticle
Corrections and comments
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Semi-structured interviews of patient accounts and caregiver, or informant, perspectives are a beneficial resource for patients suffering from diseases with complex symptomatology, such as cerebellar ataxia. The aim of this study was to identify, quantify, and compare the ways in which cerebellar ataxia patients' and informants' quality of life had changed as a result of living with ataxia. Using a semi-structured interview, responses were collected from patients and informants regarding motor, cognitive, and psychosocial variables. Responses were also collected from patients and informants to open-ended questions that were subsequently categorized into 15 quality of life themes that best represented changes experienced by the patients and informants. Ataxia patients and informants agreed as to the severity of posture/gait, daily activities/fine motor tasks, speech/feeding/swallowing, and oculomotor/vision impairment. It was also demonstrated that severity ratings for specific motor-related functions strongly correlated with corresponding functions within the International Cooperative Ataxia Rating Scale (ICARS), and that this interview identified frequency associations between motor impairments and specific psychosocial difficulties, which could be useful for prognostic purposes. Overall, the information obtained from this study characterized the symptoms and challenges to ataxia patients and their caregivers, which could serve as a useful educational resource for those affected by ataxia, clinicians, and researchers.
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