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Table 2 Sociodemographic and clinical characteristics of the patient sample

From: Coping with Wolf-Hirschhorn syndrome: quality of life and psychosocial features of family carers

 

M (SD)/n (%)

aRange

Patients

 Gender

  Female

11 (55%)

 

  Male

9 (45%)

 

Age (months)

81.85 (56.70)

 

 Birth order

  Only child

10 (50%)

 

  Firstborn

4 (20%)

 

  Second child

4 (20%)

 

  Third or Subsequent child

2 (10%)

 

 Deletion size

  Small(< 3 Mb)

4 (30.8%)

 

  Medium (3-9 Mb)

6 (46.2%)

 

  Large(> 9 Mb)

3 (23.1%)

 

 bCommunication skill

  1

9/17 (52.9%)

1.33–18.42

  2

3/17 (17.6%)

1.83–10.25

  3

3/17 (17.6%)

3.75–13.33

  4

2/17 (11.8%).

11.08–11.15

cWalking with no help

9/13 (69.2%)

3.75–18.42

cBowel and bladder control

4/12 (33.3%)

10.25–18.42

cFeeding autonomy

 With no help

2/20 (16.6%)

4.08–4.42

 With help

8/20 (40%)

1.5–18.42

  1. SD standard deviation; aMinimum and maximum age range of patients who have reached this milestone; bCommunication skill: 1 (does not use words to communicate and/or uses pictograms to do so), 2 (uses gestures and/or one-word utterances, e.g., when asking for water, points to water or says “water”), 3 (uses 2 or 3-word utterances, e.g., “I want water”), 4 (sentences or speech). c2 years old or younger was not considered for some items, as they had not reached the developmental age to such skills
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Orphanet Journal of Rare Diseases

ISSN: 1750-1172