Anxiety as a cause of attachment avoidance in women with Turner Syndrome

Clauson, Sarah; Martin, Caroline J. Hollins; Watt, Gordon F

doi:10.1080/14681994.2012.748891

Cited by 4 publications

(3 citation statements)

References 50 publications

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“…In this study, we aimed to implement a sustainable and informative approach for identifying anxiety symptoms in TS individuals within our endocrine clinic. We utilized the validated PROMIS ® Anxiety measure and within a large cohort of both pediatric and adult patients (n = 92) detected a prevalence of anxiety greater than previously documented (65% vs. 22-52%) [2,6,7,9,22,23]. One Data presented as n (%); T-score has mean 50 and SD 10; SD, standard deviation.…”

Section: Discussionmentioning

confidence: 99%

Improving Anxiety Screening in Patients with Turner Syndrome

et al. 2022

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Introduction: Turner syndrome (TS) results from a complete or partial loss of the X chromosome and affects 25–50 per 100,000 females. These individuals have characteristic neurocognitive and psychological profiles with an increased lifetime prevalence of mood disorders, such as depression and anxiety. Consensus guidelines recommend the use of psychometrically robust tools to screen for these conditions [Eur J Endocrinol. 2017;177(3):G1–G70 and Gynecol Endocrinol. 2004;19(6):313–9]. We propose a sustainable and informative approach to routine anxiety screening in individuals with TS and describe the prevalence of anxiety, genotype-phenotype associations, and impact of comorbidities on anxiety. Methods: We pilot the use of a self-administered version of the validated Pediatric, Parent Proxy, and Adult Patient-Reported Outcomes Measurement Information System (PROMIS®) Anxiety tool during routine visits to the Cincinnati Children’s Hospital Medical Center (CCHMC) TS clinic from October 2019 to March 2020. Results: Ninety-two eligible TS females, ages 8–62 years, received the PROMIS® Anxiety measure. Elevated anxiety scores, ≥1 standard deviation above the T-score mean, were present in 65% of patients (38% mild, 19% moderate, and 8% severe). Results were discussed during the clinic visit, and referral for further evaluation and treatment was offered. There was no apparent genotype-phenotype association among females with anxiety; however, there appeared to be elevated anxiety symptoms (T-score >60) in those with hearing deficits and also in individuals with three or more medical comorbidities. Of the 55% of patients who filled out the acceptability survey, 88% found the process helpful and ∼50% felt that screening should be performed at least every 6 months. Conclusion: Our study demonstrated a high prevalence of anxiety symptoms within a cohort of 92 females with TS. In alignment with current guidelines, these findings indicate the importance of routine neuropsychological assessments for timely recognition and subsequent management of anxiety, especially as milder presentations may otherwise go unnoticed. We have shown that screening tools, such as the PROMIS® Anxiety measure, can be easily utilized by nonmental health care providers (i.e., endocrinologists) who may see TS patients more frequently and be able to initiate impactful discussions surrounding mental health and further referral to subspecialists for expert management.

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Section: Discussionmentioning

confidence: 99%

Improving Anxiety Screening in Patients with Turner Syndrome

et al. 2022

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“…The researcher's attention is deflected away from the participant, meaning the interview moves forward from a discussion of the photos, delaying intimate questions about thoughts and feelings until a later point. This may facilitate rapport-building in a more natural way, over the course of a conversation, which may make it easier for participants to discuss sensitive subjects (Clauson et al, 2012).…”

Section: Using Photo Elicitation As An Adaptionmentioning

confidence: 99%

“…Most of the small number of studies that exist (e.g. Clauson et al, 2012;Guntram, 2017;Sutton et al, 2005) do not describe whether the research method was adapted to accommodate the psychosocial features of TS. Yet, these features, which include social cognition issues and anxiety, may have an impact on women's ability to participate fully in a research interview and consequently on the quality of the data.…”

Section: Introductionmentioning

confidence: 99%

‘Have you ever talked to any women with Turner syndrome?’ Using universal design and photo elicitation interviews in research with women with mild cognitive impairment

Fearon

2019

Methodological Innovations

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A growing body of methodological research literature demonstrates the importance of adapting research design to address the specific needs of participants from minority groups. The aim is to treat participants more respectfully during the research process and to enhance participation, ensuring the findings more closely reflect participants' views and experience. However, there is an absence of work examining the needs of research participants with Turner syndrome, a chromosome disorder linked with mild cognitive impairment and its potential impact on research interviews. This article draws on a study of reproductive decision-making in women with Turner Syndrome and mothers of girls with Turner syndrome to consider ways to improve research access and to make methodological adaptations for this group of participants. There is little qualitative research on the experience of living with Turner syndrome or its associated experience of infertility. Most of the small number of studies that exist do not describe whether the research method was adapted to accommodate the psychosocial features of Turner syndrome. Yet, these features, which include social cognition issues and anxiety, may have an impact on women's ability to participate fully in a research interview and consequently on the quality of the data. This article fills a gap in research describing the use of adaptions with women with Turner syndrome, which may be of use to researchers and practitioners working with this group. It describes how a novel approach to research adaptations, universal design, was used to identify and incorporate adaptions into the research design, both through the choice of photo elicitation interviews as a research method and through adjustments made at each stage of the research process. It discusses how adaptions worked to overcome barriers to participation and how effective this was, concluding with suggestions for applying this approach in future research.

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‘Should I Buy Her a Doll’? Motherhood and Turner Syndrome in Poland

Radkowska-Walkowicz

Maciejewska-Mroczek

2023

Medical Anthropology

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Anxiety as a cause of attachment avoidance in women with Turner Syndrome

Cited by 4 publications

References 50 publications

Improving Anxiety Screening in Patients with Turner Syndrome

Improving Anxiety Screening in Patients with Turner Syndrome

‘Have you ever talked to any women with Turner syndrome?’ Using universal design and photo elicitation interviews in research with women with mild cognitive impairment

‘Should I Buy Her a Doll’? Motherhood and Turner Syndrome in Poland

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