The Canadian Organ Replacement Registry (CORR) is the Canadian version of the United States Renal Data System (USRDS). Every CSN, there is an update on data produced at CORR as well as an update on future projects. CORR was born in the 1960s as a local “Renal Failure Registry” under the direction of the late Dr. Arthur Shimizu from McMaster University (Hamilton, Ontario). It then rapidly expanded to cover the entire nation with funding from both Statistics Canada and the Kidney Foundation of Canada, and with support of the CSN. Unfortunately, the registry was shuttered in 1978 due to budgetary constraints. It was restarted as “CORR” in 1981 under the leadership of the late Dr. Gerry Posen (Ottawa). In 1995, it was transferred to the Canadian Institute of Health Information (CIHI), which maintains various other registries and receives funding from provincial and federal governments. (A detailed history of the registry and its methodology is available here, and CORR reports can be accessed freely on the CIHI website.)
At this #CSN16 session, CORR representatives presented some of the early data on hospitalization in end-stage renal disease (ESRD) patients. The cohort assembled included 38,316 patients. About 60% were men, with 80% of patients on hemodialysis and 20% on peritoneal dialysis. Additional data on these patients include ethnicity (after Caucasian, commonest ethnicities were Asian and Indian, accounting for a combined 12%, followed by Aboriginal at 5%) and income. With increasing time on dialysis, there is a linear decline in the risk of hospitalization, except for an early spike in pediatric patients. With respect to ethnicity, the risk of hospitalization (with Caucasian as referent group) was lower in Asians, Indians, and blacks, but higher in Aboriginals. Surprisingly (or paradoxically), the risk of hospitalization increased with increasing income stratum. Dr. Klarenbach and Micheal Terner from CORR suggested this result could reflect greater access or use of hospitals with increasing income. The other interesting result was an increase in hospitalization risk with every additional day a patient spent in the hospital before actually starting dialysis. Overall, many of these results are likely explained by co-morbidities (which CORR collects at baseline–and may vary with increasing dialysis vintage) and other factors.
The second part of the CORR presentation dealt with an initiative to include patient-reported outcome measures (PROMs). PROMs are instruments completed by patients, which report on aspects of health status and quality of life, such as symptoms, functional status, and physical, mental, and social health. Examples would include symptom measures for itching, lack of sleep, and fatigue. Disease- or symptom-specific scales include the Kidney Disease Qualify of Life Instrument (KDQOL) and the Edmonton Symptom Assessment Scale (ESAS; see the scoring sheet here). These could be used in direct patient care to identify symptom burden, prognosticate, and trigger response pathways (eg, rehabilitation, mental health support). These could also be used by the healthcare system to identify priorities. Presently, this is a demonstration project within CIHI in the two areas of ESRD and joint replacement, and it will be interesting to see the data they generate and how this will actually be utilized. The Q&A session later also suggested a future role for Patient Reported Experience Measures (PREM) for future inclusion.
Post written by Dr. Swapnil Hiremath, AJKD Blog Contributor.
Check out more AJKD blog coverage of the CSN’s 2016 General Meeting!