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Table 2 Caregiver demographics

From: Assessing the impact on caregivers caring for patients with rare pediatric lysosomal storage diseases: development of the Caregiver Impact Questionnaire

Characteristic MLD (CE, CD) N = 16 MPS II (CE) N = 14 MPS II (CD) N = 8 MPS IIIA (CD) N = 8
Age (mean), years 43.3 (SD 9.5) 37.9 (SD 6.3) 41.3 (SD 6.9) 38.1 (range 30–48)
Sex, n (%)
 Male 1 (6.2) 2 (14.3) 0 1 (12.5)
 Female 15 (93.8) 12 (85.7) 8 (100.0) 7 (87.5)
Ethnic background, n (%)
 Hispanic or Latino 1 (6.2) NR NR NR
 Non-Hispanic and non-Latino 15 (93.8) 9 (64.3) 4 (50.0) NR
 Not asked/reported 0 5 (35.7)a 4 (50.0)a 8 (100.0)
Racial background, n (%)
 Black 0 1 (7.1) 0 0
 White 15 (93.8) 8 (57.1) 3 (37.5) 8 (100.0)
 Asian 1 (6.2) NR 0 0
 Mixed African/White 0 NR 1 (12.5) 0
 Not asked/reported 0 5 (35.7)a 4 (50.0)a 0
Country of residence, n (%)
 USA 13 (81.3) 7 (50.0) 2 (25.0) 8 (100.0)
 Canada 2 (12.5) 0 0 0
 UK 1 (6.2) 2 (14.3) 2 (25.0) 0
 Mexico 0 3 (21.4) 2 (25.0) 0
 Spain 0 2 (14.3) 2 (25.0) 0
Relationship to child, n (%)
 Mother 15 (93.8) 12 (85.7) 8 (100.0) NR
 Father 1 (6.2) 2 (14.3) 0 NR
Living status (for MPS II), n (%)
 Married (living with partner, family or friends) 14 (87.5) 12 (85.7) 8 (100.0) NR
 Single (living alone) 2 (12.5) 1 (7.1) 0 NR
 Other living arrangement, e.g. widowed 0 1 (7.1) 0 NR
Employment status, n (%)
 Employed full/part time 8 (50.0) 9 (64.3) 4 (50.0) 5 (62.5)
 Homemaker 7 (43.8) 5 (35.7) 4 (50.0) NR
 Unemployed/retired 1 (6.2) 0 0 3 (37.5)
Highest education level, n (%)
 Elementary/primary school 0 2 (14.3) 0 0
 High/secondary school 2 (12.5) 3 (21.4) 1 (12.5) 0
 Associates degree, vocational, technical or trade school 0 1 (7.1) 3 (37.5) 0
 Some college 3 (18.8) 1 (7.1) 3 (37.5) 3 (37.5)
 College/university degree 9 (56.3) 5 (35.7) 0 2 (25.0)
 Postgraduate/advanced/professional degree 2 (12.5) 2 (14.3) 1 (12.5) 3 (37.5)
  1. CD cognitive debriefing, CE concept elicitation, MLD metachromatic leukodystrophy, MPS II mucopolysaccharidosis type II, MPS IIIA mucopolysaccharidosis type IIIA, NR not reported, SD standard deviation
  2. aNot asked for caregivers in Mexico and Spain
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