The SOAR Study has been running since November 2016 and was created to understand the social skills difficulties of girls and women with Turner Syndrome (TS). Please read on for an update on some of our preliminary research results.
TS is associated with a variety of health problems affecting nearly every body system, including dysmorphic features, short stature, hearing difficulties, infertility, cardiac abnormalities, diabetes and thyroid problems. These difficulties have been the subject of much research, however, the mental health of girls and women with TS has never been systematically evaluated. At the moment there is evidence for social skills difficulties, but there is conflicting evidence for higher rates of Autism Spectrum Disorders (ASD) in girls and women with TS.
The SOAR Study was set up to systematically examine the mental health, social skills and relationships of girls and women with TS.
What we did
70 participants aged 5-25 with a diagnosis of TS were recruited through the Turner Syndrome Support Society to the SOAR Study (n=55) or the IMAGINE ID Study (n=15; national study of behavioural adjustment). Of these, 58 families have fully completed the parent assessments called the Development and Wellbeing Assessment (DAWBA) and the Strengths and Difficulties Questionnaire (SDQ). The questionnaires were completed online or over the phone.
Development and Wellbeing Assessment (DAWBA) Results:
All of the DAWBA questionnaire responses were reviewed by a mental health expert. When we compared the diagnosis results to those found in UK national studies of psychological wellbeing and behaviour we found that girls with TS were more likely to have mental health diagnoses (See Table 1). More than a third of the girls taking part in the study met criteria for a mental health diagnosis. The rates of anxiety disorders (12.7%), Attention Deficit Disorders (ADHD; 10.3%) and ASD (20.7%) were much higher than the rates reported in the UK national population.
Table 1: DAWBA results
Strengths and Difficulties Questionnaire (SDQ) Results:
When we looked at the SDQ results we saw that parents reported that their daughters had difficulties with managing emotions, hyperactivity, interacting with peers and prosocial skills (See Table 2). The impact of these difficulties on everyday life was rated as ‘very high’. Strikingly, the peer difficulties seemed to be worse in older girls than in younger girls. This suggests that girls and women with TS may find the demands of social interaction more difficult when they are older and the social demands become more complex.
Table 2: SDQ results
Taken together our preliminary results suggest that girls and women with TS experience social skills difficulties that may be interfering with their everyday life. It is important to continue to gather more information about these difficulties and how they change over time. In the next 12 months we hope to recruit many more families to the SOAR study.
We believe that social skills training interventions may be useful. The SOAR study will pilot a social skills training intervention with girls with TS in September 2018.