“Bayis Ilh Tus – a strong breath” a community-based research project to estimate the prevalence of chronic obstructive pulmonary disease in remote and rural first nations communities in Canada: research protocol

For the First Nations people in Canada, many determinants of disease, including chronic lung disease, are fundamentally related to the ongoing impacts of colonialism and, more specifically, government practices including forced attendance at residential schools and removal of children from their families for placement in to non-Indigenous adoptive homes [1]. With respect to chronic obstructive pulmonary disease (COPD), although the First Nations people have a wealth of knowledge related to health and wellness [2], the impacts of colonization and subsequent past and current harmful government policies introduced several individual- and population-level factors which negatively influence lung health and increase the risk for COPD.

Cigarette smoking (also termed non-traditional tobacco smoking in First Nations settings) is the most common individual lifestyle factor known to cause COPD [3] and was introduced to many communities post-colonization. Across Canada, more First Nations people smoke cigarettes compared to the general population (39% versus 20.5%) [4]. Moreover, the rate of cigarette smoking among First Nations has not substantially declined from 1997 to 2018 [5], while the smoking prevalence among all Canadians has decreased significantly across the same time period [4]. In the Canadian province of British Columbia, the current prevalence of cigarette smoking in Indigenous populations is approximately twice that of non-Indigenous populations (39–40% versus 18–23%, respectively) [4] with a similar trend seen for marijuana smoking [6], further increasing their risk.

Several population-level factors also negatively impact First Nations people’s lung health. Children who attended residential schools were exposed to poor air quality in unheated, poorly-ventilated buildings, had minimal access to appropriate nutrition or health care, and subsequently had high rates of childhood respiratory tract infections [2], a known risk factor for COPD [3]. As the last residential school closed in 1996, many of those children are adults today. The creation of the reserve system (where First Nations people lost their traditional territory and were forced to live in small communities) also changed seasonal patterns of hunting and harvesting and caused a reliance on western-based sources of food. This resulted in a more sedentary lifestyle, another risk factor for poor health [7].

Disparities in access to primary health care services may also influence the development of COPD in First Nations people. Limited access may be due to lack of services, especially in remote and rural communities, but are also due to decades of systemic discrimination against First Nations people [8]. Lack of appropriate primary health care can result in high emergency and acute care utilization, and indeed, the hospitalization rate for respiratory infections and asthma is at least three times higher for rural and urban First Nations than non-First Nations populations in Canada based on the 2006 Canadian Census [9], even after correcting for income level. Similarly, respiratory-related emergency use for asthma and COPD for First Nations is more than double compared to the non-First Nations population [10]. Housing problems also remain a factor, as many houses on First Nations reserves are currently in need of major repair [6], especially repair related to ventilation problems. This results in chronic exposure to mould and other pollutants which may exacerbate lung disease. Studies of indoor air quality in First Nations homes have shown high values of self-reported [11] and measured [12‐14] inhaled air pollutants. Other cultural and environmental conditions exist, such as the fact that many First Nations communities are in areas where there is extensive exposure to environmental pollutants. Northern British Columbia burns more wood per household than anywhere else in the province [14] and has a high prevalence of forest fires [15] both of which contribute to many days per year with high levels of fine particulate matter (PM). Increased exposure to wood smoke and PM is associated with increased respiratory symptoms, use of medications, and health care resources [16]. Additionally, some cultural practices, such as smoking fish and meat, or indoor fires during cultural ceremonies, may increase exposure, albeit for short periods, to inhaled particles.

Despite the presence of multiple individual and community risk factors, there is little information on the prevalence and characteristics of COPD in BC First Nations. The current estimates of COPD prevalence in First Nations communities are based on physician billing records or self-reports of a physician diagnosis. A recent Alberta study found that prevalence estimates of COPD based on billing data were two times higher in First Nations people compared to non-First Nations people [17]. The 2012 First Nations Regional Health Survey stated that ~ 7% of respondents reported they had physician-diagnosed chronic bronchitis [6]. However, the “chronic bronchitis” diagnosis is not a proxy for COPD, as it is a symptom-based diagnosis without measurement of lung function. It is well known that physician billing data or self-reports are not accurate estimates of prevalence -- in the non-Indigenous population, the true prevalence of COPD is approximately three times higher than estimates based on self-report or health administrative databases [18‐20]. The Canadian Health Measures Survey found that ~ 70% of individuals with mild to moderate COPD in the overall population have not been diagnosed despite many of those individuals being symptomatic [21].

The higher smoking prevalence in First Nations communities, combined with the cumulative impacts of colonization suggest that the prevalence of COPD in these communities is at least as high as that seen in non-Indigenous communities (which is estimated at 12% of adults 30+ years old) [19]. Without an estimate of the prevalence of COPD in the population, First Nations health services are currently limited in their ability to provide appropriate COPD primary care and chronic disease management services to their members. It would also be useful to understand the current exposure to respiratory risk factors in order to develop strategies to reduce the risks of exposure. Therefore, the purpose of this project is to estimate the prevalence of COPD and characterize current risk factors in several First Nations communities in the province of British Columbia, Canada.

The research team is a longstanding partnership between researchers at the University of British Columbia (UBC), the participating First Nations, and Carrier Sekani Family Services (CSFS) – the latter being an organization that provides direct health and social services to First Nations communities in North-Central BC. Community involvement was achieved as the study concept and design was reviewed, revised, and approved by the CSFS Community Advisory Board which is made up of a representative member of the public from each participating First Nation. Research projects undertaken with CSFS require this approval from and engagement with the CSFS Community Advisory Board, which ensures study processes are supported by CSFS, data is owned by the community, and all research provides tangible benefits to the First Nations communities. This decolonizing methodology [22] is mandated in Chapter 9 of the Tri-Council Policy Statement, titled “Research Involving the First Nations, Inuit and Métis Peoples of Canada” [23], and forms part of our approved ethics review for this study.

This study will recruit adults 30 years and older from 11 First Nations communities in remote and rural locations in northern British Columbia. The study will consist of detailed questionnaires, lung function measurement, air quality sampling, building assessments, and community-engagement activities. Each eligible adult within a randomly-selected household will be invited to participate and provide informed consent. Data collection will occur between September to April in the 2017–2023 study period in order to obtain air quality measures during high occupancy periods and when indoor heating is likely to occur.

This paper describes the methods for an epidemiological research study, made possible via a partnership between UBC, CSFS, and the participating member Nations, and conducted in a culturally safe way. Indigenous research principles, as determined by CSFS and their member Nations, state that all research must address the goals and needs of the communities, and provide tangible benefits to the communities and to CSFS. We have ensured that this project meets those expectations by first raising awareness of the issues via lung health events, obtaining permission and guidance through community advisory boards, ensuring the ethical conduct of the study based on both Indigenous and western-based ethical guidelines, having all research team members participate in CSFS cultural safety training, and keeping our obligations to the community in terms of ensuring benefit through spirometry directly within remote communities that do not have access to such a service without significant travel. We also reinforce that although this research is focused on identifying the burden of COPD within the community, we work to avoid a ‘deficit’ lens – i.e. the misguided viewpoint that the First Nations communities have low agency and are in need of ‘fixing’ by external sources. This study is viewed by the communities and the research team as an opportunity to gain knowledge to improve lung health, in order to support future planning for health care management, as determined by the community and CSFS.

There are many strengths to this project. First, to our knowledge this is the first project in Canada to estimate the prevalence of COPD in First Nations communities using a random-sampling approach to recruitment. Although more labour- and time-intensive, it is the optimal method to ensure the most accurate estimates. Second, we ensure quality control for the spirometry measurements by having: 1) pre- and post-bronchodilator measurements to reduce the risk of errors in categorization; 2) a board-certified respirologist interpreting the results; and 3) frequent quality control assessments throughout the study period. Another strength of this project is that although we collect detailed information on smoking history, we also characterize past and current risk factors beyond cigarette smoking, including childhood exposures, occupational factors, household and outdoor exposures, and the impact of discrimination and access to health services. Finally, our study ensures that the benefits to the community are realized during the study period – we offer lung testing to all adults who are interested; the test results become part of the health record; all lung function abnormalities (COPD and otherwise) are followed up by the primary care team; and spirometers and training are provided to each community for their ongoing use.

In conclusion, this study will provide an estimate of the burden of COPD, including prevalence, and under-diagnosis. We will also characterize risk factors, and respiratory morbidity in First Nations communities in Northern British Columbia. The results from this study will increase the awareness of COPD, and will support health service delivery planning and prevention efforts in the communities. Other First Nations communities in Canada may also find the protocol and subsequent results helpful as they develop chronic disease management strategies for COPD in their communities.