Developing Resource Interventions for Healthcare Professionals and Patients to Improve Knowledge About Fertility in Primary Ciliary Dyskinesia

Fertility, Health Information Exchange, Pregnancy, Primary Ciliary Dyskinesia (PCD)

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.

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: The study investigators will co-develop an online educational toolkit for medical professionals about fertility and pregnancy in patients with PCD. The study investigators will utilise the same group of approximately ten people including PPI representatives, representatives from PCD Support UK and medical professionals specialising in PCD as above. The study investigators will follow the above stages 1-4 for development of the toolkit. In stage 5, the study investigators will test the intervention in a sample of non-PCD specialists (n=10). During this stage an online quiz will be conducted to measure pre- and post- toolkit 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.

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