Table 4: Studies reporting level of developmental delay in individuals with Cornelia de Lange syndrome
For forældre, plejere, sundhedsplejersker og lærere opstår der ofte bekymringer og spørgsmål vedrørende pleje og velvære for personer med Cornelia de Lange syndrom.
Table 4. Studies reporting level of developmental delay in individuals with Cornelia de Lange syndrome 1
Study | Participant characteristics | Assessment | Individuals scoring within categories of developmental delay n (%) | ||||||||
N | Age in years Mean (SD) range | % Male | Molecular confirmation | Profound | Severe | Moderate | Mild | Borderline | Normal | ||
Bhuiyan et al. (2006) | 36 | N/A | N/A | Yes | VABS | 19 (53%) | 6 (16.5%) | 6 (16.5%) | 4 (11%) | 1 (3%) | --- |
Marchisio et al. (2008) | 50 | Median: 6.5 1-18 | 46.0 | No | Categorised based on language and cognition | --- | 20 (40%) | 24 (48%) | 6 (12%) | --- | --- |
Moss et al. (2008) | 34 | 12.4 (3.8) 5-18.96 | 47.2 | No | VABS | 9 (26%) | 16 (47%) | 6 (18%) | 3 (9%) | 0 (0%) | --- |
Nakanishi et al. (2013) | 66 | 14.7 4 – 44 | 47.0 | No | VABS | 9 (14%) | 3 (4%) | 9 (14%) | 35 (53%) | 10 (15%) | --- |
Oliver et al. (2009) | 54 | 13.9 (9.0) | 46 | No | VABS | 27 (50%) | 13 (24%) | 8 (15%) | 6 (11%) | --- | --- |
Richards et al. (2009) | 12 | 11.0 (5.2) 5.0-18.0 | 33.3 | No | VABS | --- | 4 (33%) | 5 (42%) | 3 (25%) | --- | --- |
Selicorni et al. (2007) | 62 | 12.0 0.5-48.0 | 61.3 | Yes | Unknown | 16 (26%) | 0 (0%) | 36 (58%) | 5 (8%) | --- | --- |
Wulffaert et al. (2009) | 37 | 18.1 (13.0) 1.4 – 46.2 | 56.8 | Yes | VABS | 19 (51%) | 6 (16%) | 6 (16%) | 5 (14%) | 1 (3%) | --- |
Yan et al. (2006) | 28 | 10.9 3–27 | 53.6 | Yes | Based on criteria from Gillis et al. (2004) | --- | 15 (54%) | 9 (32%) | 4 (14%) | --- | --- |
|
|
|
|
|
|
Mean (SD); range | |||||
Basile et al. (2007) |
56 |
10.6 (8.5) 1-31 |
51.8 |
No |
VABS |
AE (years) = 3.5 (2.9) 1.5–11
| |||||
Crawford et al. (2015) | 15 | 18.4 (9.8) 6.7-33.4 | 53.3 | No | VABS | SS = 60 (25); 21–121 | |||||
Kline et al. (1993) | 36 | 3.2 – 19.0 | N/A | No | VABS | SS = 48; 20–87 | |||||
Moss et al. (2005) | 8 | 9.8 4.3-14.3 | 62.5 | No | VABS | AE (months) = 25; 6–47 | |||||
Oliver et al. (2006) | 16 | 7.6 1.7-16.1 | 56.3 | No | VABS | AE (months) = 11.6 (4.9); 4–23 | |||||
Srivastava et al. (2014) | 41 | 11.4 (3.8) 5–18 | 43.9 | No | VABS | SS = 38.3 (23.1) | |||||
AE = Age Equivalence; SS = Standard Score; VABS= Vineland Adaptive Behavior Scales
- ^ Inclusion criteria for studies varied and may explain in part differences in scoring results
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