Fertility Attitudes of Adolescents and Young Adults With Turner Syndrome and Their Parents/Guardians (The Fertility ConcepTS Study)
Condition: Fertility Perservation; Fertility
MeSH terms: Turner Syndrome; Gonadal Dysgenesis
Study type: Observational

Summary: 
      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....
    

Detailed description: 
      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
    

Observational model: Cohort
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        For the three focus groups, participants will consist of adolescents and young adults with
        Turner Syndrome and their parents/guardians recruited from members of the Turner Syndrome
        Global Alliance (TSGA) by their leadership. An IRB-approved flyer will be sent to the TSGA
        for distribution to their members. The Fertility Attitudes survey will be disseminated by
        various TS support groups through a link for the survey webpage and an IRB-approved flyer
        with a QR code and link to an online survey webpage via the Clinical Trials Survey System
        (CTSS) provided to their members via their email as well as through their social media site
        (Facebook page).
      
Keywords: Phenotyping; attitudes of individuals with TS; survey of adolescents and young adults; Natural History