Attitudes toward fertility-related care and education of adolescents and young adults with differences of sex development: Informing future care models

Abstract

Introduction: Adolescents and young adults (AYA) with differences of sex development (DSD) face many challenging healthcare decisions. Fertility preservation is an emerging but experimental option for AYA with DSD. Optimal counseling regarding future fertility options has not yet been defined for this population.

Objective: To examine the fertility-related attitudes and experiences of AYA with DSD to inform future care needs.

Study design: Semi-structured interviews were conducted from 2015 to 2018 with AYA with a DSD diagnosis who were seen in our multidisciplinary clinic. Topics covered included attitudes toward fertility and family building, fertility-related communication, and perspectives on fertility-related education and decision-making. Qualitative content analysis was performed using an inductive and deductive approach.

Results: Eight AYA (median age 17 years, range 14-28) with various DSD diagnoses (Mayer-Rokitansky-Küster-Hauser syndrome, complete androgen insensitivity syndrome, congenital adrenal hyperplasia, and 46, XY DSD unspecified) participated. AYA were open to many options related to family building and fertility preservation, desired full disclosure of information, and recognized the importance of an age-related progression to autonomy in decision-making. Spanning all topics, the following were salient: 1) diversity of attitudes and care preferences amongst participants, 2) evolution of these attitudes and preferences over time, and 3) an emphasis on individualization of education and care (Fig. 1).

Discussion: This qualitative study provided information on the fertility-related experiences and attitudes of AYA with DSD. Prior studies have shown a diversity of patient and parent preferences in many aspects of DSD research as well as low rates of fertility-related education and satisfaction therefrom. The knowledge gained from this study can be used to guide individualized and compassionate education and care surrounding the complex and evolving topic of fertility. This study is limited by interviews being conducted prior to the implementation of our DSD-specific gonadal tissue cryopreservation protocol. Despite this, the fertility-related patient experiences and attitudes prior to protocol implementation are important to present. The results from the preliminary analysis of these data were used to inform a new, ongoing qualitative study to explore the patient experience with fertility preservation in a more targeted fashion.

Conclusions: The perspectives on fertility and related healthcare experiences of AYA with DSD demonstrated openness to many family-building options, a desire for full disclosure of information, care needs that evolved over time, and a recognition of the importance of eventual autonomy in decision-making. A flexible and individualized approach by the provider can optimize fertility-related healthcare experiences for AYA with DSD.

Keywords: Adolescent; Fertility; Fertility preservation: patient education as topic; Health education; Intersex persons; Qualitative research; Young adult: disorders of sex development.