دورية أكاديمية
Anxiety in Turner syndrome: Engaging community to address barriers and facilitators to diagnosis and care.
| العنوان: | Anxiety in Turner syndrome: Engaging community to address barriers and facilitators to diagnosis and care. |
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| المؤلفون: | Carl A; eXtraOrdinary Kids Turner Syndrome Research and Clinic Team, Children's Hospital of Colorado, Aurora, Colorado, USA., Good M; Turner Syndrome Colorado, USA., Haag E; Turner Syndrome Colorado, USA., Hutaff-Lee C; eXtraOrdinary Kids Turner Syndrome Research and Clinic Team, Children's Hospital of Colorado, Aurora, Colorado, USA.; Division of Neurology, Children's Hospital Colorado, Department of Pediatrics, University of Colorado School of Medicine, Aurora, Colorado, USA., Swain D; Division of Developmental Pediatrics, Department of Pediatrics, University of Colorado School of Medicine, Aurora, Colorado, USA., Tartaglia N; eXtraOrdinary Kids Turner Syndrome Research and Clinic Team, Children's Hospital of Colorado, Aurora, Colorado, USA.; Division of Developmental Pediatrics, Department of Pediatrics, University of Colorado School of Medicine, Aurora, Colorado, USA., Sakamoto C; Child Health Biostatistics Core, University of Colorado School of Medicine, Aurora, Colorado, USA., Davis S; eXtraOrdinary Kids Turner Syndrome Research and Clinic Team, Children's Hospital of Colorado, Aurora, Colorado, USA.; Division of Endocrinology, Children's Hospital Colorado, Department of Pediatrics, University of Colorado School of Medicine, Aurora, Colorado, USA., Thompson T; eXtraOrdinary Kids Turner Syndrome Research and Clinic Team, Children's Hospital of Colorado, Aurora, Colorado, USA.; Child Health Biostatistics Core, University of Colorado School of Medicine, Aurora, Colorado, USA. |
| المصدر: | American journal of medical genetics. Part A [Am J Med Genet A] 2024 Aug; Vol. 194 (8), pp. e63564. Date of Electronic Publication: 2024 Mar 25. |
| نوع المنشور: | Journal Article; Research Support, N.I.H., Extramural |
| اللغة: | English |
| بيانات الدورية: | Publisher: Wiley-Blackwell Country of Publication: United States NLM ID: 101235741 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1552-4833 (Electronic) Linking ISSN: 15524825 NLM ISO Abbreviation: Am J Med Genet A Subsets: MEDLINE |
| أسماء مطبوعة: | Publication: Hoboken, N.J. : Wiley-Blackwell Original Publication: Hoboken, N.J. : Wiley-Liss, c2003- |
| مواضيع طبية MeSH: | Turner Syndrome*/psychology , Turner Syndrome*/diagnosis , Turner Syndrome*/therapy , Turner Syndrome*/genetics , Turner Syndrome*/epidemiology , Anxiety*/diagnosis , Anxiety*/psychology , Quality of Life*, Humans ; Female ; Adult ; Child ; Adolescent ; Middle Aged ; Surveys and Questionnaires ; Young Adult ; Male ; Child, Preschool ; Caregivers/psychology ; Aged |
| مستخلص: | Turner syndrome (TS), caused by complete or partial loss of the second sex chromosome, is associated with complex medical manifestations. The TS community identifies anxiety as a major contributor to reduced quality of life. The study aimed to improve understanding of anxiety symptomatology, diagnosis, and care in individuals with TS. A mixed methods design integrated community engagement, including community leaders as co-investigators and a community advisory board, an online survey (N = 135), and in-depth interviews (N = 10). The majority of respondents reported that anxiety symptoms occur two or more days per week, with self-advocates reporting more frequent symptoms than caregivers (p = 0.03). Self-advocates reported feeling anxious more often at school/work; both rater groups reported anxiety-related behaviors were most likely to be expressed at home. Insomnia was the most common symptom of anxiety endorsed across age and rater groups (>70%). Anxiety symptoms and triggers changed with age and often were undiagnosed or untreated during childhood. Therapy and medication were reported as helpful by most respondents who had tried these strategies. Qualitative themes included: 'Triggers for anxiety are related to TS', 'Anxiety impacts the whole family', and 'Opportunities for early identification and intervention'. (© 2024 Wiley Periodicals LLC.) |
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| معلومات مُعتمدة: | NIH/NCATS Colorado CTSA: UL1 TR002535 Colorado Clinical and Translational Sciences Institute |
| فهرسة مساهمة: | Keywords: Turner syndrome; anxiety; community‐based participatory research; mental health; monosomy X; psychology |
| تواريخ الأحداث: | Date Created: 20240326 Date Completed: 20240704 Latest Revision: 20240813 |
| رمز التحديث: | 20240813 |
| DOI: | 10.1002/ajmg.a.63564 |
| PMID: | 38528640 |
| قاعدة البيانات: | MEDLINE |
| تدمد: | 1552-4833 |
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| DOI: | 10.1002/ajmg.a.63564 |