Study design
The questionnaire was designed based on domestic national conditions and previous literatures investigating patients’ opinions on ECS12, 19. We used plain language for all languages to avoid jargon. To ensure the questionnaire was accurately understood, a pre-survey was conducted in our center. Then, the final draft of the ECS questionnaire was modified by consensus of our research team, including geneticists, obstetricians, and biologists. This survey took about 10 min to complete by scanning the specific quick response code through the WeChat program on their phones. Considering that many participants may not be familiar with ECS, we provided a short informative video before the start of the questionnaire on (1) hereditary mode of recessive genetic diseases and risk in offspring; (2) what is the ECS and its benefits; and (3) a brief description of spinal muscular atrophy (SMA) as an example of these disorders. The questionnaire containing 31 questions was designed to assess the awareness, recognition and possible misconception regarding ECS, including demographics (9 questions), awareness of ECS (5 questions), perceived benefits of ECS (3 questions), misconception of ECS (5 questions), practical questions about offering ECS (6 questions), most reasons in favor of or against ECS (3 questions).
All questionnaires were filled out independently and our researchers were around to answer questions if they needed. All data were documented using a Web-based system automatically to guarantee the integrity of the data. What’s more, all participants had a unique identity (ID) number to protect their confidentiality and facilitate data collection and statistical analyses.