ArticleCurrent psychiatry reviews2013
Caregiver Burden in Fragile X Families.
Article in Current psychiatry reviews, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.
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
14 citing papers in PubMed, 1 synthesis or guideline pooled it, 19 citations in OpenAlex.
- The Impact of Fragile X Syndrome on Caregivers: A Systematic Review.Journal of intellectual disability research : JIDR · 2026Pooled it
- Mavoglurant in Fragile X Syndrome: Results of two open-label, extension trials in adults and adolescents.Scientific reports · 2018Trial
- Discourse Marker Use in Mothers of Autistic Individuals and FMR1 Premutation Carriers.Journal of autism and developmental disorders · 2026Article
- Swallowing and choking difficulties as potential markers of FXTAS progression in FMR1 premutation carriers.Scientific reports · 2025Article
- Depression Symptom Trajectories in Mothers With the FMR1 Premutation Vary by CGG Repeat Length: A Longitudinal Study of 73 Women Spanning 20-75 Years of Age.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics · 2025Article
- The Effects of the COVID-19 Pandemic on Mental Health in Mothers of Autistic Children and Mothers of Children with Fragile X Syndrome.Research in autism spectrum disorders · 2024Article
- Quality of life of Brazilian families who have children with Fragile X syndrome: a descriptive study.Journal of community genetics · 2023Article
- Assessment of Caregiver Inventory for Rett Syndrome.Journal of autism and developmental disorders · 2017Article
- Testing the Feasibility of a Passive and Active Case Ascertainment System for Multiple Rare Conditions Simultaneously: The Experience in Three US States.JMIR public health and surveillance · 2016Article
- The Impact on the Family of Four Neurogenetic Syndromes: A Comparative Study of Parental Views.Journal of genetic counseling · 2015Article
- Health and wellbeing in informal caregivers and non-caregivers: a comparative cross-sectional study of the Swedish general population.Health and quality of life outcomes · 2015Article
- Parent-delivered touchscreen intervention for children with fragile X syndrome.Intractable & rare diseases research · 2014Article
- Towards an Understanding of Neuropsychiatric Manifestations in Fragile X Premutation Carriers.Future neurology · 2014Article
- Advances in clinical and molecular understanding of the FMR1 premutation and fragile X-associated tremor/ataxia syndrome.The Lancet. Neurology · 2013Review
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 1 country.
Funding
Abstract
Complex caregiving issues occur in multigenerational families carrying the fragile X mutation and premutation. The same family members may care for children or siblings with fragile X syndrome (FXS) and for elderly parents with fragile X-associated tremor/ataxia syndrome (FXTAS). Family caregivers experience anxiety, depression, neglect of personal health care needs, employment difficulties, and loss of social support, leading to isolation and further psychiatric consequences. There is growing awareness of caregiver burden with regard to parents of children with FXS, but much less is known about the needs of informal caregivers of patients with FXTAS. In this paper, we review the available literature to date and provide suggestions for further exploration of caregivers' needs. Evidence-based strategies to address these needs are included. Many more research studies exploring caregiver burden in multigenerational fragile X families are needed, as well as studies aimed at investigating interventions and their impact on reduction.
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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 OpenQuestion graph.