CKD Conservative care and preparation for dialysis Dr Anirudh Rao Registrar, UK Renal Registry. UK Renal Registry 2013 Annual Audit Meeting

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CKD Conservative care and preparation for dialysis Dr Anirudh Rao Registrar, UK Renal Registry UK Renal Registry 2013 Annual Audit Meeting

Scope of the talk Background CK MAPPS EQUAL My Research Future

Background-Aging Population

Background-UKRR data

Background-UKRR data Survival Age group 18-34 1 year 2 year 3 year 4 year 5 year 97.79 94.90 92.21 91.31 89.27 94.67 90.95 88.26 84.38 82.88 91.82 86.24 80.39 75.99 71.21 86.67 78.69 72.72 66.04 61.67 82.25 70.40 60.46 48.38 40.72 73.90 62.94 53.95 43.26 34.55 69.18 54.18 41.81 33.77 27.36 67.47 50.93 37.98 27.80 19.52 53.37 40.03 26.69 21.24 14.71 35-44 45-54 55-64 65-69 70-74 75-79 80-84 85+

Literature survey: Summary graph of survival of elderly patients with ESRD in previous studies. Carson R C et al. CJASN 2009;4:1611-1619 2009 by American Society of Nephrology

UK evidence

Summary of published literature Limited data in UK comparing CKM vs RRT Relatively small (no with CKM 29-77) > single centres Retrospective-- issues of start time, inclusion (variable age, +/- late referred), limited outcomes (>survival), selection bias, handling late referrers Key Survival depend on when you start clock, survival diferences depend on what you adjust for Limited evidence of any dialysis beneft once adjust for function/comorbidity, no data on costs but some evidence less hospitalisation/travel, limited data on EoL care some evidence more home or hospice death

Why is conservative care data different?

Conservative care data-challenges We need data on CKD stage 5 patients Un-referred chronic kidney disease. Spectrum of conservative care management. Who and where is care provided? Variation Across UK

CKMAPPS Professor Paul Roderick, Dr Hugh Rayner, et al To describe the variation in conservative kidney management, its scale compared to dialysis, service developments and future plans. To explore how and when decisions are made about treatment options for older patients (75+) with CKD5 and factors that influence decisions to opt for CKM. To describe the interface between renal units and primary care in managing CKD5 patients. To explore feasibility of RCT or observational study of CKM vs dialysis

Study components Phase 1 Qualitative study of clinicians and patients in 9 units Phase 2 National survey of practice paterns in all renal units Sub components GP Referral paterns in 9 units, exploration for non referral in 4 units (4x25 pts) Health economics address optimum methods to collate data on resource use/costs

The EQUAL Study Dr Fergus Caskey, national lead investigator Dr A Rao, clinical research fellow Mrs Helen McNally, lead research nurse North Bristol NHS Trust

Survival (%) Background: the timely start idea 100 80 60 40 20 0 HR = 1.66 (0.95-2.89) Timely n = 159 P = 0.07 Timely 7.1 ml/min/1.73m2, Kt/Vurea >= 2.0 or npna >= 0.8 g/kg/d Late n = 94 Late 4.9 ml/min/1.73m2, Kt/Vurea < 2.0 and npna >= 0.8 g/kg/d 0 6 12 18 Time (months) 24 Incident dialysis patients who received predialysis care and had a measure of renal function and nutrition 0-4 weeks prior to start.

Background: The IDEAL Study

Background: The IDEAL Study 2982 new predialysis patients Randomization Early start Planned start at egfrcg 10-14 ml/min (or earlier because of symptoms) Realized start at egfrcg 12 ml/min (MDRD 9.0 ml/min) Mortality: 10.2 / 100 py CVD events: 10.9 Late start Planned start at egfrcg 5-7 ml/min (or earlier because of symptoms) Realized start at egfrcg 9.8 ml/min (MDRD 7.8 ml/min) RR 1.04 (95% CI 0.83-1.30) RR 1.23 (95% CI 0.97-1.46) Early start not better survival More CVD events??? Mortality: 9.8 / 100 py CVD events: 8.8

Research objectives The primary objective is: To determine the level of kidney function (blood results, physical signs or symptoms) at which overall quantity and quality of life is optimised by starting RRT in patients aged 65+.

Research objectives The secondary objectives are to determine: a. How uraemic signs and symptoms develop during the progression of advanced CKD b. The optimal laboratory measure of kidney function in advanced CKD at which to start RRT (in terms of optimising quantity and quality of life) c. The factors that influence nephrologists, patients and carers when deciding whether/ when to start RRT d. Whether patients are satisfed with decision making in relation to whether/ when to start RRT

Study design Prospective, observational cohort study Six countries Germany, Italy, The Netherlands, Poland, Sweden, The UK UK- 9 centres Individuals aged 65+ with incident egfr 20 Case note review, physical assessment, patient questionnaires Routine blood/ urine samples Additional blood/ urine at baseline and start of dialysis/ egfr 10 Target recruitment (over 2yr): 3,000 total (700 in UK)

Inclusion Criteria 1. Aged 65+ 2. Atending nephrology clinic with a frst egfr of 20 ml/min/1.73m2 (or less if presenting late) within the last 6 months, regardless of subsequent egfrs

Exclusion Criteria 1. A history of dialysis or kidney transplantation 2. The current decrease in egfr is thought to be due to an acute event with egfrs prior to this event not having been 30 for at least 3months 3. Unable to give informed consent or communication problems (including limited English language)

My Research Recruitment into studies EQUAL PILOT Generalizability

My Research The methodology will be embedded within EQUAL. Qualitative Arm Quantitative Arm

Registry perspective & Future CKD data CKMAPPS & EQUAL will inform how registry will collect conservative care data Research/PhD