Fertility Attitudes of Adolescents and Young Adults With Turner Syndrome and Their Parents/Guardians (The Fertility ConcepTS Study)
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 20
- 试验地点
- 1
- 主要终点
- SURVEY CONTENT
研究概览
简要总结
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....
详细描述
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:
- 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.
- 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.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 12 Years 至 25 Years（Child, Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- 未提供
排除标准
- 未提供
结局指标
主要结局
SURVEY CONTENT
时间窗: Baseline
Differences in attitudes between AYA with TS and their parents regarding survey content area (i) medical/surgical fertility preservation procedures with unknown outcomes
次要结局
- RESPONSE SCORES(Baseline)