ArticleAging & mental health2010
Assessment of patient and caregiver needs in fragile X-associated tremor/ataxia syndrome by utilizing Q-sort methodology.
Article in Aging & mental health, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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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.
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Who cites it
11 citing papers in PubMed, 18 citations in OpenAlex.
- Swallowing and choking difficulties as potential markers of FXTAS progression in FMR1 premutation carriers.Scientific reports · 2025Article
- 'It's especially good just to know that you're not the only one': a qualitative study exploring experiences with online peer support programmes for the Fragile X community.Journal of intellectual disability research : JIDR · 2025Article
- Apolipoproteine andInternational journal of molecular sciences · 2024Article
- Quality of Life in Fragile X-Associated Tremor/Ataxia Syndrome.Movement disorders clinical practice · 2022Article
- Risk Factors for Cognitive Impairment in Fragile X-Associated Tremor/Ataxia Syndrome.Journal of geriatric psychiatry and neurology · 2016Article
- Understanding fragile X syndrome from a mother's perspective: Challenges and resilience.International journal of qualitative studies on health and well-being · 2016Article
- Constructions of sex and intimacy after cancer: Q methodology study of people with cancer, their partners, and health professionals.BMC cancer · 2013Article
- Ages of Onset of Mood and Anxiety Disorders in Fragile X Premutation Carriers.Current psychiatry reviews · 2013Article
- COGNITIVE DYSFUNCTION INCurrent psychiatry reviews · 2013Article
- Caregiver Burden in Fragile X Families.Current psychiatry reviews · 2013Article
- Neuropathological, clinical and molecular pathology in female fragile X premutation carriers with and without FXTAS.Genes, brain, and behavior · 2012Article
Corrections and comments
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Authors and funding
6 authors at 4 institutions in 1 country.
Funding
Abstract
objectivesPsychosocial stressors faced by patients with fragile X-associated tremor/ataxia syndrome (FXTAS) and their caregivers have not been systematically explored. FXTAS is a neurodegenerative disease occurring in approximately 45% of elderly male carriers and 8-16% of female carriers of the fragile X mental retardation one premutation. This study investigated the subjective needs of patients with FXTAS and their family caregivers, by utilizing Q-sort methodology.
methodPatients with FXTAS and their caregivers seen during January 2005 to June 2007 participated. The Q-sort was composed of 17 (eight formal and nine informal) items, designed to explore emotional, informational, and instrumental needs of patients with FXTAS and their caregivers. Item scores were generated from 1 = least important to 7 = most important. Analysis included descriptive statistics for all the demographic and outcome variables. Generalized estimating equations were used to identify which of the need domains were perceived as most important by the participants.
resultsA total of 24 patients (79% men, mean age 65.6 ± 6.4 years) with FXTAS and 18 caregivers (11% men, mean age 63.6 ± 6.2 years) completed the Q-sort. Both patients and caregivers rated informational needs as most important, followed by emotional and, finally, by instrumental needs. Participants lacked many important resources, in particular those addressing instrumental needs.
conclusionProviders should be educated and able to provide timely information and referrals to formal services, as well as to informal resources, including the National Fragile X Foundation online support network (www.fragilex.org).
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