Exploring the experiences of adult patients with turner syndrome at a multidisciplinary clinic

Abstract

Objective

To explore the experiences of adults with Turner syndrome 1) attending a multidisciplinary Turner syndrome clinic regarding reproductive and general health; and 2) interacting with a multidisciplinary team for the management of their Turner syndrome.

Study design

In this descriptive, qualitative study, 21 adults with Turner syndrome who attend a multidisciplinary Turner syndrome clinic participated in semi-structured interviews. An inductive approach was used to code data and determine themes.

Results

Five themes were identified. 1) Differing feelings toward fertility status. Experiences with fertility differed widely, based on timing and communication of diagnosis, and feelings toward having children. 2) Adaptability and overcoming challenges. Participants sought ways to adapt to living with Turner syndrome. 3) Engagement in one's own care. Participants were engaged in their care and sought support in learning about their condition, especially around reproductive health. 4) Desire for comprehensive healthcare. Participants felt the multidisciplinary Turner syndrome clinic provided knowledgeable, convenient, and comprehensive care. 5) Barriers to accessing healthcare. Participants identified challenges both in accessing healthcare providers with expertise in Turner syndrome and in navigating the financial impact of Turner syndrome.

Conclusion

Infertility had differing impacts on adults with Turner syndrome. Participants were satisfied with the multidisciplinary care model. Our findings highlight the importance of multidisciplinary care for optimizing the experience of adults with Turner syndrome.