REproductive Health in PRimary Ciliary Dyskinesia: Developing User-informed Clinical and Educational Resources (REPRoDUCE)
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 入组人数
- 30
- 主要终点
- A resource for patients and a toolkit for medical professionals
研究概览
简要总结
This project will involve working with people with PCD and medical professionals to develop resources that will help patients and the people providing their care to better understand fertility and pregnancy safety in people with this condition.
详细描述
The study investigators will co-develop an online educational animation and text resource for patients and the public about PCD and fertility and pregnancy.
Development of patient resource:
The study investigators will conduct workshops with a group of approximately ten people including additional PPI representatives (adults with lived experience of PCD), representatives from PCD Support UK and medical professionals specialising in PCD. In stage 1 of the resource development, the study investigators will conduct an online workshop to identify priorities for information for inclusion in the resource. In stage 2 the study investigators will create a resource prototype based on the information gained in stage 1. In stage 3 the study investigators will conduct and record 1:1 online think aloud interviews to capture real-time reactions and gain evaluation of the resource prototype to identify areas for improvement. In stage 4, the study investigators will make further resource modifications. In stage 5 the intervention will be tested in a sample of men and women with PCD (n=10). The study investigators will then conduct an online quiz to measure pre- and post- resource use knowledge about PCD, fertility and pregnancy, and collect suggestions for improvement via a survey form. Feedback from stage 5 will be incorporated into the final resource prior to dissemination.
The resource will be translated into non-English languages spoken in the UK to aid inclusion of a wider audience.
Co-development of toolkit for medical professionals:
研究设计
- 研究类型
- Interventional
- 分配方式
- Non Randomized
- 干预模型
- Parallel
- 主要目的
- Other
- 盲法
- None
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Aged 18 years or older
- •'Highly likely' or confirmed diagnosis of Primary Ciliary dyskinesia, or being a healthcare professional, or representative from a stakeholder group e.g. patient led charity
- •Able to understand and willing to sign the informed participant consent prior to participation
排除标准
- •Unwilling to participate in the study
- •Not meeting inclusion criteria
- •Unable to understand or unwilling to sign the informed participant consent prior to participation
研究组 & 干预措施
Use of educational resource for patients
Online resource use by adults with PCD
干预措施: Online educational resource (Other)
Use of educational resource for healthcare professionals
Use of online toolkit by healthcare professionals
干预措施: Toolkit for healthcare professionals (Other)
结局指标
主要结局
A resource for patients and a toolkit for medical professionals
时间窗: Duration of study (up to 3 years)
1. Development of a resource for patients and toolkit for healthcare professionals 2. Qualitative and quantitive participant data on the acceptability and usefulness of above resources.
次要结局
未报告次要终点