Fertility Attitudes of Adolescents and Young Adults With Turner Syndrome and Their Parents/Guardians (The Fertility ConcepTS Study)

Background:

Turner syndrome (TS) is caused by the partial or complete absence of one of the two X

chromosomes in all cells or a portion of cells. Adolescents and young adults (AYAs) with TS and their families are not routinely counseled about fertility issues and options. Researchers want to learn more about the attitudes of AYAs with TS and their parents or guardians regarding future fertility.

Objective:

To create and distribute a survey for AYAs with TS and their parents or guardians that will improve understanding about their attitudes toward fertility, fertility preservation, and options for building a family.

Eligibility:

Female AYAs aged 12-25 years with TS, and parents or guardians of AYAs with TS.

Design:

Participants will be put into 3 focus groups: females ages 12-17 with TS; females ages 18-25 with TS; and parents or guardians of AYAs with TS. Each focus group session will be held via Zoom. Participants can use video or just audio for the session. They will use their first name. If they prefer, they can use a pseudonym. Each group will meet once. The session will last 90 minutes.

Participants will receive a draft of the survey. The survey questions ask about fertility and pregnancy. Participants will evaluate the usefulness and relevance of each question. They will be asked if any question should be changed. The survey will be finalized based on their feedback. The final survey will be distributed through TS groups.

Participation will last for 1 day....

This study aims to improve our understanding of attitudes of adolescents and young adults (AYA) with Turner Syndrome and their parents/guardians towards fertility, fertility preservation, and options for building a family through development and dissemination of a fertility attitudes questionnaire.

Primary Objective: To compare differences in attitudes between AYA with TS and their parents regarding survey content area (i) medical/surgical fertility preservation procedures with unknown outcomes.

Secondary Objectives:

1. To compare differences in attitudes between AYA with TS and their parents regarding survey content areas (ii) interest in understanding the effects of TS on fertility and pregnancy and (iii) opinions of having children that are genetically similar and alternative methods of building a family.
2. To compare differences in attitudes between adolescents aged 12-17 years and young adults aged 18-25 years with TS regarding survey content areas (i) medical/surgical fertility preservation procedures with unknown outcomes, (ii) interest in understanding the effects of TS on fertility and pregnancy, and (iii) opinions of having children that are genetically similar and alternative methods of building a family.

Primary Endpoint: Difference in response scores between AYA with TS-parent dyads to the survey questions addressing survey content area (i) interest in medical/surgical fertility preservation procedures with unknown outcomes.

Secondary Endpoints:

1. Differences in response scores between AYA with TS-parent dyads to the survey questions addressing survey content areas

   (ii) interest in understanding the effects of TS on fertility and pregnancy, and (iii) opinions of having children that are genetically similar and alternative methods of building a family.
2. Differences in response scores between adolescents with TS ages 12 to 17 years and young adults with TS ages 18 to 25 years to the survey content areas addressing (i) interest in medical/surgical fertility preservation procedures with unknown outcomes, (ii) interest in understanding the effects of TS on fertility and pregnancy, and (iii) opinions of having children that are genetically similar and alternative methods of building a family

Eligibility Criteria:
* INCLUSION CRITERIA:

In order to be eligible to participate in this study, an individual must meet all of the following criteria:

1. Stated willingness to comply with all study procedures and availability for the duration ofthe study
2. Adolescents and young adults ages 12 to 25 years who self- identify as having Turnersyndrome
3. Individuals who self-identity as parents/guardians of adolescents and young adults ages12 to 25 years with Turner syndrome

EXCLUSION CRITERIA:

Inability to read and comprehend written and Verbal English as the surveys required for the study have not been translated for non-English speaking subjects.