Table 1 Demographic profile of focus groups (n = 41)
Healthcare providers | Caregivers and relatives of MPS patients | Adults with MPS | Adolescents with MPS | Children with MPS | |
|---|---|---|---|---|---|
Number of participants | 14 | 10 | 6 | 3 | 8 |
State of origin | 10 RS, 4 RJ | 6 RS, 4 RJ | 3 RS, 3 RJ | 2 RS, 1 RJ | 6 RS, 2 RJ |
MPS type | I = 1 II = 5 III = 2 IVa = 1 VI = 1 | I = 2 II = 3 VI = 1 | IV = 2 VI = 1 | II = 2 IVa = 2 VI = 4 | |
Mean age | 41 | 42.2 | 24 | 16 | 11 |
Range | (24–58) | (21–62) | (18–33) | (15–17) | (9–13) |
Sex (%) | |||||
Male/female | 2 (14.3)/12 (85.7) | 3 (30)/7 (70) | 3 (50)/3 (50) | 2 (66.6)/1 (33.3) | 6 (75)/2 (25) |
Employed/student (%) | |||||
Yes | 12 (100) | 7 (70) | 2 (33.3) | 3 (100) | 8 (100) |
Duration of FG | 3 h 20 min | 2 h 40 min | 2 h 15 min | 1 h 10 min | 1 h 15 min |