Table 3 Influence of severity of symptoms in PedsQL™ Family Impact Module
Sample | Total Impact Score | Parent HRQOL | Family Functioning |
|---|---|---|---|
Gross motor | |||
GMFC-MLD ≤ 4 (n = 10/10/10) | 61.7 (18.6) | 63.3 (19.6) | 59.3 (19.6) |
GMFC-MLD > 4 (n = 32/32/31) | 56.5 (17.4) | 60.6 (18.2) | 47.3 (22.7) |
Complete immobility | |||
GMFC-MLD < 6 (n = 30/30/30) | 61.8 (17.8) | 64.2 (18.9) | 56.0 (22.0) |
GMFC-MLD = 6 (n = 12/12/11) | 48.6* (13.5) | 54.6 (15.8) | 37.2* (18.3) |
Speech | |||
VSS < 4 (n = 10/10/10) | 62.5 (16.8) | 65.0 (18.0) | 60.5 (17.8) |
VSS = 4 (n = 32/32/31) | 56.6 (17.9) | 60.3 (18.6) | 47.9 (23.2) |
Complete loss of communication | |||
VSS ≤ 4 (at least ability to express emotions) (n = 34/34/34) | 61.5 (16.4) | 65.1 (17.1) | 54.3 (21.8) |
No ability to express emotions (n = 8/8/7) | 43.1** (15.3) | 45.8** (15.9) | 34.5 (19.3) |
Visual stimulation | |||
Visual stimuli perceptible (n = 32/32/32) | 62.2 (16.7) | 65.8 (17.2) | 54.1 (21.5) |
Visual stimuli not perceptible (n = 10/10/9) | 44.8** (13.9) | 47.4** (15.0) | 39.6 (23.4) |
Independent eating | |||
Independent eating possible (n = 8/8/8) | 66.3 (17.8) | 67.7 (18.9) | 64.5 (15.9) |
No independent eating possible (n = 34/34/33) | 56.1 (17.3) | 60.0 (18.2) | 47.7* (22.8) |
PEG tube | |||
No PEG tube present (n = 23/23/23) | 62.7 (15.7) | 64.8 (17.9) | 56.4 (18.6) |
PEG tube present (n = 19/19/18) | 52.3* (18.5) | 57.3 (18.6) | 44.0 (24.5) |
Final stage of disease | |||
Child alive (n = 32/32/31) | 61.7 (17.5) | 64.7 (18.2) | 55.4 (21.9) |
Child deceased (n = 11/11/11) | 44.5** (9.8) | 49.3* (14.0) | 34.2** (14.8) |