Table 1 Survey respondent (phase 1) and discussion group participant (phase 2) sociodemographic, PKD and reproductive characteristics
Characteristic | Survey respondents N = 16 n (%)a | Discussion group participants N = 3 b n (%) |
|---|---|---|
Age (mean, range) | 33.3 (21–41) | 35 (32–37) |
Aboriginal or Torres Strait Islander | 5 (31.3) | 0 (0) |
Born in Australia | 12 (75.0) | 3 (100) |
Has a post-secondary school qualification | 15 (93.8) | 3 (100) |
Partnered | 16 (100) | 3 (100) |
Has a healthcare concession card | 8 (50.0) | Not assessed |
Has private health insurance | 11 (68.8) | Not assessed |
Age when diagnosed with PKD (mean, range) | 26.0 (12–35) | 24.3 (21–27) |
Type of PKD | ||
Autosomal dominant PKD | 14 (87.5) | 3 (100) |
Autosomal recessive PKD | 2 (12.5) | 0 (0) |
Currently on dialysis | 7 (43.8) | 0 (0) |
Had a kidney transplant | 2 (14.3) | 0 (0) |
Tried to get pregnant | 15 (93.8) | 3 (100) |
Number of children (mean, range) | 0.9 (0–2) | 1.7 (1–2) |
Desired number of children (median, range) | 2 (0–4) | 2 (2) |
Expected number of children (median, range) | 2 (0–3) | 2 (2) |
Taken longer than 12 months to get pregnant | 4 (25.0) | 0 (100) |