Table 1 Demographic and clinical characteristics of caregivers and patients at the time of the study
Caregivers | Patients | |||||||||
|---|---|---|---|---|---|---|---|---|---|---|
Caregiver Number | Relationship | Working (Y/N) | Sex | Age at diagnosis (years) | Current age (years) | CKD stage | Kidney transplant | Cysteamine treatment | Extrarenal manifestations | Concomitant pathologies |
1 | Mother | no | Girl | 1 | 19 | 3 | no | IR cysteamine | no | no |
2 | Mother | no | Boy | 2 | 17 | 1 | yes | IR cysteamine | no | no |
3 | Mother | yes | Girl | 1 | 16 | 3 | no | IR cysteamine | Endocranial hypertension, shunt, severe impaired vision | no |
4 | Mother | yes | Boy | 1 | 13 | 2 | no | IR cysteamine | no | no |
5 | Mother | no | Boy | 1 | 12 | 1 | no | ER cysteamine | no | no |
6 | Mother | no | Girl | 0.8 | 6 | 1 | no | IR cysteamine | no | gastrostomy |
7 | Mother | no | Boy | 1 | 12 | 3 | yes | IR cysteamine | Endocranial hypertension, shunt | no |
8 | Mother | yes | Boy | 1 | 13 | 3 | yes | IR cysteamine | Hypothyroidism | no |
9 | Mother | yes | Boy | 1.2 | 6 | 1 | no | IR cysteamine | no | no |