Table 2.
Quantitative data from the in-house self-questionnaire (results are expressed as mean score ± standard deviation).
| All parents | Total n = 18 | Non-hesitant n = 11 | Hesitant n = 7 | p-value | GT-treated n = 6 | Other therapy n = 12 | p-value |
|---|---|---|---|---|---|---|---|
| Involvement in medical and therapeutic decision process | 0.412 | 0.146 | |||||
| No | 1 (5.6%) | 1 (9.1%) | - | 1 (16.7%) | - | ||
| Yes | 17 (94.4%) | 10 (90.9%) | 7 (100%) | 5 (83.3%) | 12 (100%) | ||
| Satisfaction with the way their views were taken into account | 80.6 (±16.6) | 77.7 (±9.8) | 84.7 (±23.7) | 0.137 | 77.6 (±22.8) | 81.8 (±14.4) | 1.000 |
| Satisfaction about their overall health | 67.3 (±20.8) | 63.1 (±14.6) | 74.0 (±28.0) | 0.291 | 62.0 (±20.5) | 70.0 (±21.3) | 0.458 |
| Parents whose physical health is affected by the SMA | 0.060 | 0.289 | |||||
| No | 2 (11.1%) | - | 2 (28.6%) | - | 2 (16.7%) | ||
| Yes | 16 (88.9%) | 11 (100%) | 5 (71.4%) | 6 (100%) | 10 (83.3%) | ||
| Parents whose psychological health is affected by the SMA | 0.087 | 0.289 | |||||
| No | 6 (33.3%) | 2 (18.2%) | 4 (57.1%) | 1 (16.7%) | 5 (41.7%) | ||
| Yes | 12 (66.7%) | 9 (81.8%) | 3 (42.9%) | 5 (83.3%) | 7 (58.3%) | ||
| Parents who declared their child was treated | n = 16 | n = 9 | n = 7 | n = 4 | n = 12 | ||
| Observed change related to treatment: Yes | 16 (100%) | 9 (100%) | 7 (100%) | 4 (100%) | 12 (100%) | ||
| Type of motor changes observed | 0.771 | 0.182 | |||||
| Motor function improvments | 16 (100%) | 9 (100%) | 7 (100%) | 4 (100%) | 12 (100%) | ||
| And/or New motor function acquisition | 12 (75.0%) | 7 (77.8%) | 5 (71.4%) | 4 (100%) | 8 (66.7%) | ||
| Changes in level of concern about their child's health | 0.881 | 0.641 | |||||
| Increased | 2 (12.5%) | 1 (11.1%) | 1 (14.3%) | - | 2 (16.7%) | ||
| Same | 8 (50.0%) | 5 (55.6%) | 3 (42.9%) | 2 (50.0%) | 6 (50.0%) | ||
| Decreased | 6 (37.5%) | 3 (33.3%) | 3 (42.9%) | 2 (50.0%) | 4 (33.3%) | ||
| Changes in level of concern about their child's futur | 0.866 | 0.915 | |||||
| Increased | 5 (31.3%) | 3 (33.3%) | 2 (28.6%) | 1 (25.0%) | 4 (33.3%) | ||
| Same | 8 (50.0%) | 4 (44.4%) | 4 (57.1%) | 2 (50.0%) | 6 (50.0%) | ||
| Decreased | 3 (18.8%) | 2 (22.2%) | 1 (14.3%) | 1 (25.0%) | 2 (16.7%) | ||
| Satisfaction with the changes observed following treatment | 71.7 (±17.7) | 70.3 (±14.8) | 73.4 (22.1) | 0.741 | 74.3 (±18.3) | 70.8 (±18.3) | 0.751 |
| Changes in burden due to the SMA and its management | 0.660 | 0.537 | |||||
| Increased | 3 (18.8%) | 2 (22.2%) | 1 (14.3%) | 1 (25.0%) | 2 (16.7%) | ||
| Same | 10 (62.5%) | 6 (66.7%) | 4 (57.1%) | 3 (75.0%) | 7 (58.3%) | ||
| Decreased | 3 (18.8%) | 1 (11.1%) | 2 (28.6%) | - | 3 (25.0%) |