Presentation 16 – Dr Talia Thompson

SSBP Virtual Symposium 2023

Anxiety in Turner Syndrome: Engaging Community to Address Barriers and Facilitators to Diagnosis and Care

Presenting Author : Dr Talia Thompson

Abstract

Anxiety in Turner Syndrome: Engaging Community to Address Barriers and Facilitators to Diagnosis and Care

Carl A.¹, Good M.², Haag E.², Grosskreuz T.^1,3, Hutaff-Lee C.^1,4,5, Bennett E.^1,5,6, Tartaglia N.^1,5,6, Davis S.^1,5,7, Thompson T.^1,5,8

¹eXtraordinarY Kids Turner Syndrome Research and Clinic Team, USA
²Turner syndrome Colorado, USA
³Child Health Research Intern Program, University of Colorado, USA

⁴Division of Neurology, Children’s Hospital Colorado, USA

⁵Department of Pediatrics, University of Colorado School of Medicine, USA
⁶Division of Developmental Pediatrics, Children’s Hospital Colorado, USA

⁷Division of Endocrinology, Children’s Hospital Colorado, USA
⁸Child Health Biostatistics Core, Children’s Hospital Colorado, USA

Background. Turner syndrome (TS) is a genetic condition caused by complete or partial loss of the second sex chromosome, affecting 1/2000 females. The TS community identifies anxiety as a major contributor to reduced quality of life. This study aimed to improve understanding of anxiety symptomatology in individuals with TS and to identify barriers and facilitators to diagnosis and care.

Methods. A mixed methods study design integrated community engagement through an online survey (N=135) followed by in-depth interviews (Caregivers=5, Individuals with TS=5). Descriptive statistics summarized survey results. Team-based rapid analysis synthesized interview findings to develop overarching themes.

Results. Participants with TS represented diverse ages (Caregiver survey: 12y±6; individual with TS survey: 26y±12) and geographical locations. Most identified as white (93.4%) and non-Hispanic (90.0%), and caregiver respondents had high educational attainment and annual income. Half of respondents reported experiencing anxiety symptoms 4 or more days per week, and caregivers and individuals reported anxiety affects their daily life (mean of 4.2 and 5.1 out of 10 respectively). Individuals with TS reported feeling anxious more often at school/work, while both caregivers and individuals reported anxiety expression increased at home. Insomnia was the most common symptom of anxiety endorsed across age and rater groups. Children were primarily triggered by stimulating environments and medical appointments and displayed aggression and hyperactivity as symptoms of anxiety. Perceived anxiety symptoms in adolescents included clinging and rumination and were triggered by conflict and increased expectations. Therapy and medication were rated as helpful when used, and use increased with age. Qualitative themes were: Anxiety impacts the whole family, TS creates a unique anxiety experience, and there are opportunities for early identification and intervention.

Conclusions. Anxiety in TS presents differently across the lifespan and may necessitate a nuanced, TS-informed and family-systems approach to diagnosis and care.

Keywords: Turner syndrome, anxiety disorders, community-based participatory research

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