Table 1.

Demographic profile of patients and caregivers

Patient profile	Patients with severe cognitive impairment (n = 8)		Patients with low or no cognitive impairment (n = 17)
	MPS I (np = 3)	MPS VI (np = 5)	MPS I (np = 8)	MPS II (np = 4)	MPS VI (np = 5)
Gender
Men	2	5	2	4	4
Women	1	0	6	0	1
Age
17–20 years	1	2	2	0	1
21–34 years	1	2	2	3	2
29–50 years	1	1	4	1	2
Education
Preschool	2	3	0	0	0
Primary school	1	2	0	0	0
High school	0	0	1	0	0
Vocational certificate	0	0	2	0	2
Higher education	0	0	5	3	3
Disability-friendly class	0	0	0	2	0
Access to specialised classes	2	1	0	0	0
Current living location
Complete dependency on external institutes*	3	4	0	0	0
Complete dependency on parenteral home	0	1	3	2	2
Living alone	0	0	4	1	3
Living in a shared home	0	0	1	1	0
Age of patient at diagnosis (years)
< 1 year	1	0	4	0	0
1–10	2	5	4	9	3
> 10	0	0	3	0	2
Other family members diagnosed with MPS	0	0	1	1	2

Caregiver profile	Patients with severe cognitive impairment (nc = 8)		Patients with low or no cognitive impairment forms (nc = 17)
Relationship with patient
Father	1		1
Mother	7		9
Spouse	0		1
Age of the parent interviewed (years)c
< 50	2		6
50–60	4		1
61–70	0		2
≥ 71	0		2
ND	2		0
Professional activity
Yes (Part time/Full time)	7		5
No (Retired)	1		4
ND	0		2
Marital status
Married	3		6
Separated/widower	5		3
ND	0		2
Number of children
1	3		3
2	4		6
3	1		2

MPS Mucopolysaccharidoses, n_c Number of caregivers, n_p Number of patients, ND Not disclosed

^*External institutes refer to medical foster care, sheltered workshops, day care centres, disability clinics, and medical professional institutes