Mass screening for chronic kidney disease in rural and remote Canadian first nations people: methodology and demographic characteristics

First Nations people living in many rural and remote communities suffer from a disproportionate risk of Chronic Kidney Disease and Kidney Failure associated with Type 2 Diabetes. Some of this is likely is likely attributable to poor access to routine primary and specialty preventative care.

A mobile point of care mass screening and risk based counselling program for Chronic Kidney Disease is feasible in rural and remote First Nations communities. Meaningful partnerships between First Nations communities, government, experts in indigenous health and nephrology specialist teams ensure the success of delivering these types of innovative initiatives.

Patients with Chronic Kidney Disease (CKD) and its end stage of Kidney Failure (KF) have poor health outcomes and utilize a disproportionate amount of health care resources [1-3]. Patients with CKD are at high risk of early death and disability and rural KF patients may often require relocation to receive facility based hemodialysis [4-6]. Despite the high costs of providing this therapy, health outcomes and quality of life are frequently very poor, with over half of KF patients dying in the first five years of treatment. Routine, mass screening of the general population is not desirable or recommended, but targeted screening and treatment of patients at risk with hypertension or diabetes has been found to be cost effective in a variety of settings [7,8].

The province of Manitoba has amongst the highest incidence and prevalence of KF in Canada, driven by a disproportionate burden of diabetes and CKD in First Nations communities [9,10]. Preventative health care delivery and screening for modifiable disease presents a unique challenge in that many First Nations people often reside in remote communities. Despite persistent health disparities and the challenges of living in poverty, First Nation communities continue to receive poor primary and specialty care services [11,12]. Other features such as a younger population (50% < 19 years of age) and inequities in the social determinants of health present additional challenges [13]. Compounding these risks, First Nations individuals have reduced rates of kidney transplantation and living kidney donation, in part due to a strong family history of diabetes and overall reduced access to health care [14].

First Nations children have a 2-6-fold higher risk of CKD than non-First Nations children in Canada [15,16]. Manitoba also has the highest rates of youth onset type 2 diabetes in Canada (12 fold higher than any other province) [17]. This is especially concerning, as youth onset diabetes has been shown to be associated with rapid progression of CKD leading to KF in early adulthood [18]. First Nation children also often have an earlier onset of risk factors for CKD including high rates of obesity, hypertension, and metabolic syndrome [18]. They often live in poverty and are faced with food insecurity, inter-generational trauma, poor housing, have high levels of stress and emotional distress [19,20] and have low educational attainment [21,22].

It is clear that a new paradigm is urgently needed to address the growing number of First Nations people afflicted with complications of Type 2 Diabetes such as CKD and KF. The First Nations Community Based Screening to Improve Kidney Health and Prevent Dialysis (FINISHED) project intends to test the hypothesis that a mobile, mass screening initiative available to all First Nations people 10 years of age and older residing in rural and/or remote communities, is feasible. The research questions of this project will include reports on the epidemiology of CKD in adult and pediatric populations screened, the modelled cost effectiveness of this initiative and the long term outcomes of individuals screened. The primary objective of this manuscript is to describe in detail the key elements in the design, implementation of such a program and provide preliminary data on the baseline characteristics of our screened cohort.

We have thus far achieved screening rates ranging from 3.15 – 46.6% (of eligible members aged 10–80) as of August 31^st, 2014. Screening efforts will continue until December 2014. The mean screening rate in fly-in remote communities was 12% (SD 9.44) while more accessible communities with road access achieved screening rates of 25.7% (SD 13.7). We have achieved 100% data capture as we have utilized point of care testing equipment and electronic data capture in real time. Table 1 describes baseline characteristics of each community screened in terms of age, accessibility, time spent screening and percent screened. To date, all patients deemed intermediate or high risk of kidney failure in both pediatric and adult populations received nephrology referrals and have been seen by a nephrologist in Winnipeg (our tertiary referral centre) within one month of screening. This initiative had no adverse effects on lengthening wait times for pediatric or adult nephrology clinics referred to as there was no wait list to see nephrologists prior to and during the screening initiative at referral centres. No major adverse events have been reported as a result of the screening initiative.

A mass screening initiative for Chronic Kidney Disease in rural and remote First Nations communities using state of the art point of care testing, electronic data capture, on site risk prediction and risk based counselling is feasible and acceptable to communities. This approach represents one potential option to improve chronic disease detection and treatment in at risk populations with poor access to primary care and social determinants of health compounding risks of poor outcomes associated with CKD.

We are aware of a number of CKD screening initiatives that have been conducted in a variety of jurisdictions worldwide. The National Kidney Foundation Kidney Early Evaluation Program (KEEP) has screened over 185,000 individuals in the United States targeting people over the age of 18 with hypertension, diabetes or a family history of CKD [30] yielding a wealth of novel epidemiologic data on early detection and surveillance of CKD [30,31]. These same screening efforts have been replicated in Japan, Mexico and elsewhere. The Korean National Health Screening performed a cross sectional mass screening study of the general population using eGFR and dipstick proteinuria on over 10 million participants in that country finding relatively low prevalence of CKD (6.15%) [32]. The Thai led screening and early evaluation of Kidney Disease (SEEK) study used stratified cluster sampling to mass screen 3459 subjects finding an overall CKD prevalence of 17.5%. In Canada, the Screening for Limb, I-Eye, Cardiovascular and Kidney Complications (SLICK) Program was implemented in 1999 to improve diabetes care for First Nations in Alberta. Nine hundred and eighty First Nation individuals living with diabetes in 44 communities underwent extensive monitoring and targeted treatment for diabetes complications demonstrating improvements in many clinical parameters including BMI, blood pressure, cholesterol and HbA1C [33,34].

In contemplating this initiative, our group performed a systematic review of the cost effectiveness studies for CKD screening [7]. These studies have used heterogeneous approaches to screening, mainly utilizing proteinuria or eGFR alone as a screening test. Not surprisingly, we found that screening those at risk of CKD as a result of documented hypertension or diabetes likely represented good value for money, whereas mass screening of the general population did not. Little cost effectiveness data exists for specific populations at risk such as First Nations people, or those with poor access to primary care services due to location of residence. We know that these populations under threat suffer from a disproportionate burden of kidney failure and other complications of type 2 diabetes and that this risk seems to be increasing over time [34,35]. The intent of this project is to report on the true epidemiology of CKD in rural, remote First Nations people and to ensure that those detected receive timely and seamless care within a health care system often not optimally suited to break down cross-jurisdictional barriers between federal and provincial providers.

There are several plausible explanations for the health disparities observed in Canadian First Nations communities. Structural racism continues to diminish and conceal the strengths found within the communities. The Indian Act and the socially constructed interventions like the residential school and sixties scoop contribute to the inter-generational oppression and challenges faced by First Nations who wish to attain equal health outcomes as settler Canada enjoys. Few Canadians realize these represent both historical and current racially constructed interventions aimed to diminish and demean First Nation identity; they continue to have devastating and brutal impacts on the health and healing of these communities [36].

While we have demonstrated that our approach is feasible, many limitations and questions remain. First, screening is very costly in more remote, fly-in communities driven primarily by travel costs, shipping of equipment and accommodations for screening teams. Turnout rates for screening can be low for a variety of unforeseen circumstances (e.g. structural challenges, deaths in community, competing events, local transportation logistics, mistrust of providers external to the communities and floods). Comprehensive multimedia communication with community members, flexible screening teams in terms of time and approach and engaging specific community members such as Aboriginal Diabetes Initiative workers are key to overcoming some of these challenges). However, in these cases, the cost per screened patient can increase tremendously. Work is currently underway to perform formal cost effectiveness analyses on the data derived from this project. Second, the project has been diligent in ensuring all intermediate and high risk referrals are seen in the tertiary care referral site (Winnipeg) within one month of screening. These consultations might be better accommodated with outreach clinics, or by telehealth that might improve patient satisfaction and comfort in future initiatives. It is possible that our risk prediction filters in adult and pediatric populations are imperfect, however the KFRE was derived and validated in Canadian populations including Aboriginals and race was not a factor in improving the equation’s performance. The equation has subsequently been validated in 23 additional cohorts on five continents worldwide including over 700,000 individuals including Pima Indian populations [37]. Pediatric algorithms were derived by pediatric nephrologists and endocrinologists according to review of the literature and best current practice. Third, while we have assumed that early detection of existing disease and appropriate referral of at risk patients to primary care or nephrologists commensurate with risk within communities represents the best value for money in attenuating downstream consequences of CKD. We have not, however, provided a comparator group here where an equal amount of resources were spent on building capacity within communities to employ a semi-structured, multi-faceted approach to combating diabetes and detecting complications. We are keenly aware of this limitation and are planning to test these two options using a cluster randomized controlled trial design examining short and long term surrogate outcomes for CKD.

A community based mass screening initiative for CKD in rural and remote First Nations communities using point of care testing, electronic data capture, and real time risk prediction and patient counselling is feasible and acceptable to patients and communities. This screening initiative offers some insight into the prevalence of CKD and can be replicated to address different chronic diseases in rural, remote and urban communities. It remains unknown if this type of approach represents good value for money compared with other established community capacity building programs for diabetes prevention with demonstrated success in other jurisdictions. Further study on this question is required in the form cost effectiveness analyses which are underway, and community level cluster randomized controlled trials.