Background: Turner Syndrome (TS) is a sex chromosome aneuploidy (45,X) associated with social skill difficulties. The 2016 Cincinnati clinical care guidelines recommend that the Program for the Education and Enrichment of Relational Skills (PEERS) social skills intervention is piloted. PEERS has previously been used in face to face interventions with male adolescents with autism spectrum conditions. This pilot project will be the first to examine the feasibility and acceptability of the PEERS protocol online.
Methods: The PEERS program has been piloted with 7 young women with TS (classic, mosaic and variant karyotypes) between the ages of 17 and 20 with a verbal IQ above 70. Participants were screened using the Strengths and Difficulties Questionnaire (SDQ) Peer Scale and the Social Competence with Peers (SCP) questionnaire to measure deficits in social performance (parent report). The PEERS screening interview assessed motivation to improve social competence (young person and parent). Participants scored in the abnormal range on the SDQ peers scale (t(6)=4.66, P=0.003) and on the SCP (t(6)=−4.02, P=0.007) compared to female population norms. The young women and their parents were highly motivated to improve their daughters social functioning. The PEERS program consists of 14 weekly lessons and runs two concurrent groups; one for the young women and one for parents. The young person lessons are structured to provide didactic instruction as well as social skill rehearsal. In order to broaden the reach of the program PEERS has been modified to be delivered primarily online. Face to face sessions took place at the start, middle and end of the program. All other sessions were conducted online using Adobe Connect Meetings. The pilot used an uncontrolled study design with multiple-case tracking. The primary outcome measure assessed social performance at 9 time-points (3 pre-pilot, 3 during pilot, 3 post-pilot). Secondary outcome measures assessed pre-post changes in social knowledge, social cognition, anxiety, self-esteem, autistic symptomatology and evaluated intervention acceptability.
Results & discussion: The outcomes of this small scale pilot will be used to adapt the programme based on feedback and estimate the sample for a future randomised controlled trial. Should the online model of delivery prove acceptable to families, this will substantially broaden the accessibility of social skills interventions in a cost-effective way to more young women with TS and other rare genetic disorders.
18 - 21 May 2019
European Society of Endocrinology