The utility assessment of Chinese pregnant women towards the birth of a baby with Down syndrome compared to a procedure-related miscarriage.

OBJECTIVE

This study was performed to investigate the preferences of Chinese pregnant women for Down syndrome-affected birth compared to invasive test-related miscarriage, using the standard gamble approach, and to investigate whether there is a difference in Utility Score between general obstetric patients and those who request prenatal screening.

METHODS

An interviewer-administered survey was conducted on 67 women who presented to the General Obstetric Clinic for booking visits and 69 women who presented to the first-trimester Combined Screening Clinic for fetal Down syndrome in a University Obstetric Unit. Preferences for Down syndrome-affected birth compared to invasive test-related miscarriage were assessed using the standard gamble approach. The differences in Utility Scores for the two outcomes and difference in scores between the two study groups were compared.

RESULTS

There was no significant difference in any of the Utility Scores studied between the two study groups. Therefore the summary statistics were performed using the whole study population. The median Utility Score for a Down syndrome-birth was 0.20 (IQR: 0.10-0.40), which was significantly lower than that of 0.55 (IQR: 0.40-0.80) for a procedure-related miscarriage (p < 0.001). Also, the Utility Scores were neither found to be associated with any particular patient demographic characteristics nor their perception of the functional disability of individuals with Down syndrome.

CONCLUSION

The Chinese pregnant women in Hong Kong consider a Down syndrome-affected birth as a much worse health state and life event than a miscarriage. Whether or not to have a screening test appeared to be a result of accessibility and affordability rather than fundamental differences in attitude towards Down syndrome. The findings of the study provide important information on how prenatal screening and diagnosis of fetal chromosomal abnormalities should be offered.