ArticleJournal of autism and developmental disorders2020
Growing up with Fragile X Syndrome: Concerns and Care Needs of Young Adult Patients and Their Parents.
Article in Journal of autism and developmental disorders, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 1 of them a synthesis that pooled it.
What it found
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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.
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.
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Who cites it
19 citing papers in PubMed, 1 synthesis or guideline pooled it, 26 citations in OpenAlex.
- The Impact of Fragile X Syndrome on Caregivers: A Systematic Review.Journal of intellectual disability research : JIDR · 2026Pooled it
- Exploring Parents' Values in Healthcare Decision-Making for Rare Genetic Neurodevelopmental Disorders: A Qualitative Study to Inform Guideline Development.Journal of intellectual disability research : JIDR · 2026Article
- Values of Individuals With Rare Genetic Neurodevelopmental Disorders and Their Family/Caregivers in Healthcare: A Scoping Review to Inform Guideline Development.Journal of intellectual disability research : JIDR · 2026Article
- Transition From Children's to Adults' Healthcare for Youth With (Genetic) Intellectual Disabilities: An ERN-ITHACA Guideline.Journal of intellectual disability research : JIDR · 2026Article
- Patient reported outcomes that matter to individuals with (genetic) intellectual disabilities: a qualitative study.Journal of neurodevelopmental disorders · 2025Article
- 'We are the engine': a focus group study on clinical practice guideline development with European patient advocates for rare congenital malformations and/or intellectual disability.Orphanet journal of rare diseases · 2025Article
- 'Mind the Gap'-A Survey on Care Gaps and Priorities for the Transition to Adult Healthcare According to Caregivers of Young People With Rare Conditions Associated With Intellectual Disability.Journal of intellectual disability research : JIDR · 2025Article
- 'In the dark': parents' lifelong commitment to supporting children with Bardet-Biedl syndrome.Health psychology and behavioral medicine · 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
- Do we care? Reporting of genetic diagnoses in multidisciplinary intellectual disability care: a retrospective chart review.Orphanet journal of rare diseases · 2024Article
- Project ECHO tele-mentoring primary care for individuals with IDD.Health care transitions · 2024Article
- Language Skills Influence Transition Planning in Adolescents With Fragile X Syndrome.American journal on intellectual and developmental disabilities · 2024Article
- Pregnancy, Childbirth, Puerperium, Breastfeeding, and Sexuality in the World of Rare Diseases.Healthcare (Basel, Switzerland) · 2023Article
- Rare diseases of epigenetic origin: Challenges and opportunities.Frontiers in genetics · 2023Review
- The aberrant behavior profile in Indonesian individuals with fragile X syndrome with limited genetic services.Intractable & rare diseases research · 2022Article
- [From the social pediatric center to the medical center for adults with disabilities-transition in adults with complex disabilities].Der Nervenarzt · 2022Review
- Prevalence and barriers to health care transition for adolescent patients with childhood-onset chronic diseases across Japan: A nation-wide cross-sectional survey.Frontiers in pediatrics · 2022Article
- How Knowledge Mapping Can Bridge the Communication Gap Between Caregivers and Health Professionals Supporting Individuals With Complex Medical Needs: A Study in Fragile X Syndrome.Frontiers in psychiatry · 2021Review
- Lived Experiences of Fragile X Syndrome Caregivers: A Scoping Review of Qualitative Studies.Frontiers in neurology · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Little is known about care needs of young adults with Fragile X Syndrome (FXS). Patient-driven information is needed to improve understanding and support of young adults with FXS. A qualitative study was performed in 5 young adult patients (aged 18-30), and 33 parents of young adults. Concerns and care needs were categorized using the International Classification of Functioning, Disability, and Health. Results indicated concerns on 14 domains for males, and 13 domains for females, including physical, psychological and socio-economical issues. In both groups parents reported high stress levels and a lack of knowledge of FXS in adult care providers. This study revealed concerns on various domains, requiring gender-specific, multidisciplinary transitional care and adult follow-up for patients with FXS.
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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.