ArticleJournal of patient-reported outcomes2026
Exploring US patient and caregiver perspectives on burden associated with Friedreich Ataxia.
Article in Journal of patient-reported outcomes, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
Abstract
backgroundFriedreich ataxia (FA) is a hereditary degenerative disease with clinical manifestations in multiple organs characterized by progressive gait and limb ataxia. Qualitative interviews were conducted with patients and caregivers to characterize the burden experienced related to FA symptoms and impacts. METHODOLOGY: A sample of 20 FA patients and 11 caregivers were recruited from the Friedreich Ataxia Research Alliance (FARA) registry and FA Facebook communities. Individual qualitative interviews were conducted via telephone by trained qualitative research interviewers to last no more than 45 min. Audio files were transcribed and coded to group concepts by similarity of theme or concept using ATLAS.ti software.
resultsThe 20 patients interviewed ranged from 22 to 36 years of age (mean 28.45), 75% were female and seven (35%) were still working full-time. The participants interviewed required an average of 55.5 h per week of assistance from a caregiver. The most frequently reported symptoms were neurological including impaired speech (n = 14; 70%), loss of balance (n = 10; 50%) and decreased muscle coordination (n = 8; 40%). Negative impacts of symptoms included limited function in activities of daily living such as walking (n=15; 75%), dressing (n=11; 55%), limited social activities (n=11; 55%), personal care and hygiene (n=8; 40%), and falls (n=6; 30%). Additionally, 91% of caregivers reported observing falls, and 73% reported issues with patient personal care and hygiene. Patients rated their symptom bothersomeness at 6.7, impact of FA on their ability to live their daily lives at 7.1, and their financial burden due to FA at 6.5, all on a 9-point scale where higher scores indicate worse outcomes.
conclusionsResults show that from both the patient and caregiver perspective living with FA is highly burdensome for patients, negatively impacting their daily lives, and limiting their ability to lead a functional life, in areas like mobility, self-care, and productivity.
Indexed as
Identifiers
What Socratic holds
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 Socratic graph.