Experiences and Perspectives of Adolescents and Young Adults with Klinefelter Syndrome: Hormone Replacement, Future Fertility, and Psychosocial Well-Being Qualitative Interview Guide

This interview guide helped was used during semi-structured interviews assessing the following three areas: 1) resources and support systems AYA with KS utilize to cope with challenges related to their condition, 2) psychosocial well-being of AYA with KS and how KS is perceived to impact it, and 3) attitudes of AYA with KS about testicular dysfunction, specifically the likely need for testosterone replacement and fertility-related interventions. The current study reports data on the first and second areas. <br>The authors collaboratively developed this interview guide to assess these content areas based on three primary factors: 1) an interview guide developed by Papadakis et al. (2021) exploring fertility-related health care and decision-making needs for AYA with DSDs, 2) literature review (Dennis et al., 2015; Turriff et al., 2015; Turriff et al., 2017; Richardson et al., 2022), and 3) the authors’ expertise caring for children and AYA with KS in a multidisciplinary clinic at a single pediatric institution.<br>