ArticleAMRC open research2021
Symptom burden of people with progressive ataxia, and its wider impact on their friends and relatives: a cross-sectional study.
Article in AMRC open research, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
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Who cites it
14 citing papers in PubMed.
- The role of transcranial direct current stimulaton on ataxia: a scoping review.Journal of neural transmission (Vienna, Austria : 1996) · 2026Review
- Remote Online-Based Application of the Cerebellar Cognitive Affective Syndrome Scale.Cerebellum (London, England) · 2026Article
- An International Survey of Patients with Ataxia: Trends in Patient-Reported Symptoms.Cerebellum (London, England) · 2026Article
- Exploring US patient and caregiver perspectives on burden associated with Friedreich Ataxia.Journal of patient-reported outcomes · 2026Article
- Patient-reported, psychosocial and health economic outcomes in mild to moderate Friedreich's ataxia: baseline results of the PROFA study.The Lancet regional health. Europe · 2026Article
- Ataxia.Movement disorders clinical practice · 2025Article
- Longitudinal Assessment Reveals Stage-Dependent Utility of Digital Motor Markers in SCA1.Movement disorders clinical practice · 2025Article
- Biomarkers of balance and gait deficits inFrontiers in aging neuroscience · 2025Review
- Patient-Relevant Digital-Motor Outcomes for Clinical Trials in Hereditary Spastic Paraplegia Type 7: A Multicenter PROSPAX Study.Neurology · 2024Article
- Article
- The Use of the Voice Trainer App for Vocal Control in People with a Degenerative Ataxia: A Pilot Intervention Study.Cerebellum (London, England) · 2024Article
- 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
- 4-Aminopyridine improves real-life gait performance in SCA27B on a single-subject level: a prospective n-of-1 treatment experience.Journal of neurology · 2023Article
- ClearSpeechTogether: a Rater Blinded, Single, Controlled Feasibility Study of Speech Intervention for People with Progressive Ataxia.Cerebellum (London, England) · 2023Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background: Progressive ataxias are complex disorders that result in a wide variety of symptoms. Whilst we currently have a relatively good understanding of the symptom patterns associated with the various types of ataxia, and how these diseases progress over time, their impact on the person with ataxia is less well understood. In addition, little is known about how carers, friends and families are affected by them. This paper aims to provide preliminary information on the presence and impact of medical symptoms and day-to-day challenges on people with ataxia and their friends and relatives. Method: Data were extracted from a survey by Ataxia UK for their members. The views of 366 people with ataxia and 52 friends and relatives are reported. Data were analysed for the entire groups, as well as for the three most common ataxia types represented in the sample, Friedreich's ataxia, inherited ataxia (excluding Friedreich's ataxia), and cerebellar ataxia of unknown cause. Results: The survey confirmed the symptom patterns described in previous research, but further showed that the impact of these symptoms can vary across ataxia populations. Similar findings were observed for day-to-day challenges. Friends and relatives experienced similar challenges to people with ataxia, indicating that support provided has to consider those supporting people with ataxia as well as the patient. Respondents also highlighted limitations in terms of accessing support services, and not all services were able to cater fully to their specific needs. Conclusion: This study begins to provide information that can be used in further research to explore the needs of people with ataxia and their carers, friends, and relatives. Such research will support treatment trial design, ensuring patients' needs are considered, help to tailor support services to their needs, and ensure health care professionals have the necessary skills to fully address them.
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