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.