THU212 Exploring The Experiences Of Adult Patients With Turner Syndrome At A Multidisciplinary Clinic
Authors: Shin Sooyoun , Liang Laurel , Korenvain Clara , McCarthy Lisa , Lega Iliana Carolina 
Published: October 2023

Disclosure: S. Shin: Grant Recipient; Self; Canadian Menopause Society Pfizer Research Award. L. Liang: None. C. Korenvain: None. L. McCarthy: None. I.C. Lega: None.

Context: Turner syndrome (TS), a genetic condition affecting 1 in 2500 live female births, is associated with short stature, infertility, and premature menopause. Patients with TS are often followed by multidisciplinary clinics as children, but such care is often lacking in adulthood. A multidisciplinary clinic in Canada fills this gap, providing dual visits with an endocrinologist and gynecologist. There is a paucity of research exploring the experiences of adults with TS with respect to menopause and fertility, and the perceived impact of a multidisciplinary team. Objective: To explore the experiences of adults with TS regarding 1) reproductive health and menopause, and 2) interacting with a multidisciplinary team for the management of TS. Methods: Qualitative semi-structured interviews were conducted with 21 adult TS patients who attend a multidisciplinary TS clinic. Interviews were transcribed verbatim and coded by two independent researchers. A codebook was developed using an iterative process with input from the entire research team. Themes were generated using thematic analysis. Results: Twenty-one participants aged 20 to 65 were interviewed and five themes emerged from the data. 1) Participants’ differing feelings toward fertility status. Experience with fertility differed widely and was affected by the timing of diagnosis, how the diagnosis was communicated, and feelings toward having children. 2) Resiliency. Participants sought ways to adapt to living with TS, striving towards resilience by leaning on support from family and others with TS. 3) Involvement in one’s own care. Many participants were actively engaged in their care and sought support in learning more about their condition. 4) Desire for comprehensive health care. Many participants felt the multidisciplinary TS clinic was knowledgeable, convenient, and effective in managing their comorbidities. 5) Barriers to accessing health care. Participants identified challenges in accessing health care providers with TS expertise, in navigating the financial burden involved in comprehensive TS care, and in accessing inclusive care. Conclusion: Infertility appeared to have a variable impact on participants, ranging from those who felt it was an important aspect in developing their self-identity to those who felt it had little impact. Our research highlights the importance of using a tailored approach to providing fertility care. Participants desired to be actively involved in their own healthcare and for further access to educational resources. The participants greatly appreciated the care provided in the multidisciplinary care model and called for further capacity building in TS expertise among all healthcare providers. To improve the care of our TS patients, our findings support the demand/need for additional TS-specific clinics across the world.

Presentation: Thursday, June 15, 2023