Table 1.
Sociodemographic characteristics and participation rates of Dutch end-users.
| HDGECs (n = 12) | Partners (n = 12) | HCPs (n = 12) | |
|---|---|---|---|
| Age (mean; range) | 53; 31–68 | 46; 25–71 | 46; 28–68 |
| Gender [n (%)] | |||
| Male | 6 (50) | 8 (67) | 8 (67) |
| Female | 6 (50) | 4 (33) | 4 (33) |
| HD stage affected individual [n (%)] | |||
| Premanifest | 6 (50) | 6 (50) | - |
| Manifest | 6 (50) | 6 (50) | - |
| HD disease stage (UHDRS-TFC score) (mean; range) | |||
| Premanifest HDGECs | 13; 11–13 | - | - |
| Manifest HDGECs | 11; 9–13 | - | - |
| Living situation [n (%)] | |||
| Together with partner | 9 (75) | 12 (100) | - |
| Alone | 3 (25) | - | - |
| Time since genetic test in years (mean; range) | 8; 1–18 | - | - |
| Profession [n (%)] | |||
| Neurologist | - | - | 1 (8) |
| Social worker | - | - | 2 (17) |
| Dietician | - | - | 1 (8) |
| Physiotherapist | - | - | 1 (8) |
| Psychologist | - | - | 2 (17) |
| Speech therapist | - | - | 1 (8) |
| Occupational therapist | - | - | 1 (8) |
| Elderly care physician | - | - | 1 (8) |
| Elderly care physician and psychiatrist | - | - | 1 (8) |
| General practitioner | - | - | 1 (8) |
| Participation in co-creation session [n (%)] | 9 (75) | 10 (83) | - |
| Participation in prototype session [n (%)] | |||
| Prototype 1 | 9 (75) | 7 (58) | - |
| Prototype 2 | 7 (58) | 8 (67) | - |
HDGECs, Huntington’s disease gene expansion carriers; HCPs, Health care providers; n, Number of participants; HD, Huntington’s disease. UHDRS-TFC score: Unified Huntington’s Disease Rating Scale – Total Functioning Capacity score, ranging from 0 to 13 with lower scores indicating more decline in functioning (44). Numbers and percentages are rounded to the nearest whole number.