Table 3.
Results of the five outcomes.
| Outcome measure and groupa | T0b, mean (SD) | T1c, mean (SD) | T2d, mean (SD) | ||
| Child’s quality of life (CVSe, range scale 0-24) | |||||
| Group 1 | 7.4 (4.1) | 6.8 (4.4) | 5.8 (3.7) | ||
| Group 2 | 7.5 (4.1) | 7.1 (4.5) | 6.8 (4.8) | ||
| Parental stress (PIPf, range scale 42-210) | |||||
| Frequency | |||||
| Group 1 | 99.0 (22.5) | 95.7 (24.1) | 89.3 (16.6) | ||
| Group 2 | 99.7 (26.3) | 97.9 (26.5) | 98.0 (21.6) | ||
| Difficulty | |||||
| Group 1 | 87.9 (27.2) | 85.3 (31.0) | 74.6 (21.6) | ||
| Group 2 | 80.8 (25.0) | 79.0 (24.6) | 78.5 (18.0) | ||
| Parental fatigue (MFIg, range domain scale 4-20) | |||||
| General fatigue | |||||
| Group 1 | 11.7 (3.4) | 11.5 (3.8) | 10.4 (3.1) | ||
| Group 2 | 12.0 (3.8) | 11.4 (3.9) | 10.8 (4.6) | ||
| Physical fatigue | |||||
| Group 1 | 9.7 (2.9) | 10.1 (3.4) | 9.1 (2.7) | ||
| Group 2 | 9.8 (3.5) | 9.7 (3.5) | 9.7 (3.8) | ||
| Mental fatigue | |||||
| Group 1 | 9.6 (3.0) | 9.8 (3.4) | 9.0 (3.0) | ||
| Group 2 | 9.9 (3.7) | 10.1 (3.8) | 9.1 (3.9) | ||
| Reduction in motivation | |||||
| Group 1 | 9.5 (2.7) | 9.3 (2.8) | 8.5 (2.4) | ||
| Group 2 | 9.3 (3.0) | 8.9 (2.8) | 9.2 (2.9) | ||
| Reduction in activity | |||||
| Group 1 | 9.4 (2.7) | 9.5 (3.4) | 8.7 (2.9) | ||
| Group 2 | 9.0 (3.3) | 9.2 (3.4) | 8.4 (3.5) | ||
| Self-efficacy in communication with health care professionals (PEPPI-5h, range scale 5-25) | |||||
| Group 1 | 21.3 (2.7) | 21.1 (2.2) | 21.7 (2.5) | ||
| Group 2 | 21.7 (2.6) | 21.8 (2.8) | 20.5 (2.9) | ||
| Family management (FaMMi) | |||||
| Child’s daily life (range 5-25) | |||||
| Group 1 | 17.2 (4.1) | 17.4 (4.2) | 17.3 (4.2) | ||
| Group 2 | 17.5 (4.4) | 18.1 (3.8) | 17.7 (4.4) | ||
| Condition management ability (range 12-60) | |||||
| Group 1 | 42.6 (4.3) | 42.2 (3.7) | 44.0 (3.0) | ||
| Group 2 | 42.6 (4.5) | 43.2 (4.4) | 41.7 (5.0) | ||
| Condition management effort (range 4-20) | |||||
| Group 1 | 13.2 (3.0) | 12.2 (3.0) | 12.3 (3.1) | ||
| Group 2 | 12.6 (3.7) | 11.7 (3.9) | 11.9 (3.4) | ||
| Family life difficulty (range 14-70) | |||||
| Group 1 | 35.2 (9.1) | 35.3 (9.1) | 32.4 (8.1) | ||
| Group 2 | 34.3 (10.1) | 33.5 (10.5) | 33.5 (2.1) | ||
| Parental mutuality (range 8-40) | |||||
| Group 1 | 32.2 (4.4) | 31.9 (4.0) | 31.7 (4.1) | ||
| Group 2 | 32.8 (4.0) | 32.0 (4.2) | 34.5 (4.8) | ||
| View on condition impact (range 10-50) | |||||
| Group 1 | 28.4 (4.1) | 28.0 (4.5) | 27.4 (4.1) | ||
| Group 2 | 27.0 (5.9) | 25.9 (5.7) | 27.1 (4.2) | ||
aGroup 1: access to e-Powered Parents after T0; Group 2: access to e-Powered Parents after T1.
bGroup 1: n=68; Group 2: n=65.
cGroup 1: n=35; Group 2: n=51.
dGroup 1: n=31; Group 2: n=20.
eCVS: Child Vulnerability Scale.
fPIP: Pediatric Inventory for Parents.
gMFI: Multidimensional Fatigue Inventory.
hPEPPI-5: Perceived Efficacy in Patient-Physician Interactions.
iFaMM: Family Management Measure.