Table 1.
Clinical characteristics of survey responders
| Variable | Survey Responders, n=625 | |||
|---|---|---|---|---|
| n | Proportion, % | |||
| Men | 625 | 51 | ||
| Age, yr, median (IQR) | 625 | 25 (21–28) | ||
| Age group, yr, 16 to <21/21 to <26/26 to <31 | 625 | 21/30/48 | ||
| Country | 625 | |||
| England | 74 | |||
| Scotland | 6 | |||
| Wales | 10 | |||
| Northern Ireland | 10 | |||
| Ethnicity | 625 | |||
| White | 85 | |||
| Asian | 9 | |||
| Black | 4 | |||
| Other | 3 | |||
| Index of multiple deprivation quintile, 1/2/3/4/5a | 625 | 19/21/17/22/21 | ||
| Managed in adult center and aged <20 yr | 101 | 57 | ||
| Managed in transplant center | 625 | 55 | ||
| Nephrology unit size, small/medium/largeb | 625 | 18/46/35 | ||
| Managed in transition clinic centerc | 625 | 64 | ||
| UK Renal Registry linked | 609 | 97% | ||
| Duration since KRT start, yr, median (IQR)d | 609 | 6 (2–11) | ||
| Started in adult unit | 609 | 59 | ||
| Primary kidney diseasee | 572 | |||
| Glomerular diseases | 27 | |||
| Systemic diseases affecting the kidney | 7 | |||
| Familial/hereditary nephropathies | 11 | |||
| Tubulointerstitial diseases | 31 | |||
| Miscellaneous kidney disorders | 18 | |||
| Time to KRT start from first nephrology review, d, median (IQR) | 431 | 745 (40–1984) | ||
| Time to KRT start for those in pediatric services, d, median (IQR) | 396 | 667 (34–1923) | ||
| Time to KRT start for those in adult services, d, median (IQR) | 35 | 1048 (211–3441) | ||
| Late referral, time to KRT start <90 d/90 to <365 d/≥365 d | 431 | 21/9/41 | ||
| Timeline data complete | n=590 | 97% | ||
| Starting modality | 590 | |||
| Hemodialysis | 37 | |||
| Peritoneal dialysis | 39 | |||
| Transplant | 21 | |||
| Starting transplant type | 125 | |||
| Live donor | 46 | |||
| Deceased donor | 45 | |||
| Unknown | 9 | |||
| Current modality | 590 | |||
| Transplant | 71 | |||
| Hemodialysis | 24 | |||
| Peritoneal dialysis | 6 | |||
| Current transplant type | 417 | |||
| Live donor | 39 | |||
| Deceased donor | 52 | |||
| Unknown | 9 | |||
| Modality changes >90 d, 0/1/≥2 | 590 | 31/38/28 | ||
| Ever had a transplant | 590 | 82 | ||
| Ever had a failed transplant | 502 | 27 | ||
| Number of transplants, mean (SD) | 502 | 1 (1) | ||
| Biochemical variables | Transplant, n=417 | Dialysis, n=173 | ||
| n | Mean (SD) | n | Mean (SD) | |
| eGFR, ml/min per 1.73 m2 | 414 | 59 (23) | — | — |
| CKD stage, 1/2/3a/3b/4/5 (proportion, %) | 414 | 10/36/26/17/7/2 | — | — |
| Hemoglobin, g/L | 414 | 127 (18) | 169 | 107 (17) |
| Ferritin, µg/L, median (IQR) | 350 | 135 (54–308) | 168 | 351 (211–608) |
| Bicarbonate, mmol/L | 383 | 23 (3) | 158 | 24 (4) |
| Calcium, mmol/L | 413 | 2.40 (0.12) | 171 | 2.30 (0.22) |
| Phosphate mmol/L | 415 | 1.00 (0.26) | 171 | 1.82 (0.64) |
| Parathyroid hormone, pmol/L, median (IQR) | 326 | 8.1 (5.0–13.0) | 157 | 38.7 (18.5–86.1) |
| Systolic BP, mm Hg | 320 | 127 (14) | 140 | 138 (25) |
| Diastolic BP, mm Hg | 305 | 77 (11) | 137 | 84 (18) |
| Weight, kg | 303 | 68 (19) | 137 | 71 (24) |
Participant interaction with the online survey that led to the generation of an identifiable survey record was counted as a response. Not all percentages may total 100 because of rounding. Nonparametric data are presented as median and IQR. IQR, interquartile range; KRT, kidney replacement therapy.
We used derived UK-wide indexes of multiple deprivation quintiles (1 indicates least deprived and 5 indicates most deprived) (34) using postcodes.
Defined by tertiles of patients on prevalent KRT in 2015; we defined small units as having <500 adult patients or <50 pediatric patients, medium units as having 500 to <1500 adult patients or 50 to <100 pediatric patients, and large units as having ≥1500 adult patients or ≥100 pediatric patients.
As of September 2015 (35), with additional data obtained directly from kidney units.
If KRT start date was missing, the first timeline entry date was substituted.
According to the 2012 European Renal Association–European Dialysis and Transplant Association coding system (13).