Study Exploring Views on Reproductive Counseling Among Adults With Genodermatoses and Their Healthcare Providers

What this Trial Is About

This observational study focuses on patients with genodermatoses and their partners who wish to have children, exploring their decision-making process and views on reproductive options. It also aims to understand how well healthcare professionals such as clinical geneticists and dermatologists are informed about these reproductive choices and how they counsel patients. The study covers various genodermatoses groups including keratinisation disorders, skin fragility diseases, ectodermal dysplasias, dermato-oncogenetic syndromes, and others. Participants will take part in individual semi-structured qualitative interviews to share their perspectives on reproductive decision-making and counselling. The study includes affected patients and partners, as well as healthcare professionals involved in the care of genodermatosis patients. These interviews aim to gather detailed insights from each group regarding their knowledge and views on reproductive options. During the study, researchers will assess the perspectives of patients, partners, and healthcare providers concerning reproductive decisions. This assessment will take place over one day per participant. The study is led by Maastricht University Medical Center and involves no treatment interventions, focusing solely on interviews to collect qualitative data. Participation involves sharing personal views and experiences related to reproductive counselling.

Qualitative Study in Patients With Genodermatoses and Healthcare Professionals on Reproductive Counselling