Table 2.
A comparison of SMA families and the general population (views on newborn screening)
| Question | GenPop (n = 232) | UK SMA population (AwS and Families; n = 337) | p‐value |
|---|---|---|---|
| Q1. Identifying SMA at birth would lead to better support for children and families (%) | |||
| Agree | 215 (93) | 282 (84) | .001 |
| Other | 17 (7) | 55 (16) | |
| Q2. Identifying SMA at birth would extend life expectancy of SMA children (%) | |||
| Agree | 118 (51) | 127 (38) | .001 |
| Other | 114 (49) | 210 (62) | |
| Q3. Identifying SMA at birth and not during pregnancy removes parents ability to make informed decisions about bringing SMA children into the world (%) | |||
| Agree | 145 (63) | 192 (57) | .18 |
| Other | 87 (37) | 145 (43) | |
| Q4. Identifying SMA before symptoms emerge will prevent families and children enjoying life while they are symptom‐free (%) | |||
| Agree | 60 (26) | 149 (44) | <.0001 |
| Other | 172 (74) | 188 (56) | |
| Q5. Identifying SMA at birth will help research by enabling more children to be enrolled into clinical trials early on (%) | |||
| Agree | 209 (90) | 251 (74) | <.0001 |
| Other | 23 (10) | 86 (26) | |
| Q6. Identification of SMA at birth would interfere with the early bonding process (%) | |||
| Agree | 30 (13) | 50 (15) | .52 |
| Other | 202 (87) | 287 (85) | |
| Q7. Identification of SMA at birth would make the diagnosis easier for parents to accept (%) | |||
| Agree | 118 (51) | 100 (30) | <.0001 |
| Other | 114 (49) | 237 (70) | |
| Q8. Identifying SMA at birth would spare the difficulties associated with finding a diagnosis for a child later on (%) | |||
| Agree | 185 (80) | 222 (66) | .0003 |
| Other | 47 (20) | 115 (34) | |
| Q9. Identifying SMA at birth is important, even if the Type cannot be determined (%) | |||
| Agree | 191 (82) | 225 (67) | <.0001 |
| Other | 41 (18) | 112 (33) | |
| Q10. Identifying SMA at birth is important because it will enable parents to make informed decisions about future pregnancies (%) | |||
| Agree | 217 (94) | 272 (81) | <.0001 |
| Other | 15 (6) | 65 (19) | |
| Q11. It is unethical to screen newborns for conditions that have no effective treatment (%) | |||
| Agree | 15 (6) | 27 (8) | .48 |
| Other | 217 (94) | 310 (92) | |
| Q12. I would support a Newborn screening program for SMA (%) | |||
| Agree | 196 (84) | 236 (70) | <.0001 |
| Other | 36 (16) | 101 (30) | |