Lack of access to care, funding limitations, cultural, and social barriers are challenges specific to tribal communities that have led to adverse cancer outcomes among American Indians/Alaska Natives (AI/AN). While the cancer navigator model has been shown to be effective in other underserved communities, it has not been widely implemented in Indian Country. We conducted in-depth interviews with 40 AI/AN patients at tribal clinics in Idaho and Oregon. We developed the survey instrument in partnership with community members to ensure a culturally appropriate semi-structured questionnaire. Questions explored barriers to accessing care, perceptions of the navigator program, satisfaction, and recommendations. AI/AN cancer patients reported physical, emotional, financial, and transportation barriers to care, but most did not feel there were any cultural barriers to receiving care. Navigator services most commonly used included decision making, referrals, transportation, scheduling appointments, and communication. Satisfaction with the program was high. Our study provides a template to develop a culturally appropriate survey instrument for use with an AI/AN population, which could be adapted for use with other indigenous patient populations. Although our sample was small, our qualitative analysis facilitated a deeper understanding of the barriers faced by this population and how a navigator program may best address them. The results reveal the strengths and weakness of this program, and provide baseline patient satisfaction numbers which will allow future patient navigator programs to better create evaluation benchmarks.
Correction of race in hospital discharge datasets through linkage with a reference file of known AI/AN individuals is an important first step before analytic research on AI/AN health care in the Pacific Northwest can be accomplished with administrative datasets.
Data linkage with a registry of known AI/ANs allowed us to generate accurate life tables that had not previously been available for this population and revealed disparities in both life expectancy at birth and survival across the life span. These results represent an important tool to help AI/AN communities as they monitor their health and promote efforts to eliminate health disparities.
Background
The objectives of this study were to evaluate racial misclassification in a statewide trauma registry and to describe the epidemiology of trauma among the Washington American Indian and Alaska Native (AI/AN) population.
Methods
We performed probabilistic record linkage between the Washington Trauma Registry (2005–2009) and Northwest Tribal Registry, a dataset of known AI/AN. AI/AN patients were compared with caucasians on demographic, injury and clinical outcome factors. A multivariable model estimated odds of mortality.
Results
Record linkage increased ascertainment of AI/AN cases in the trauma registry 71%, from 1777 to 3039 cases. Compared with caucasians, AI/AN trauma patients were younger (mean age=36 vs 47 years, p<0.001) and more commonly male (66.5% vs 61.2%, p<0.001). AI/AN experienced more intentional injuries (suicide or homicide: 20.1% vs 6.7%, p<0.001), a higher proportion of severe traumatic brain injury (20.7% vs 16.8%, p=0.004) and were less likely than caucasians to use safety equipment such as seat belts/airbags (53.9% vs 76.7%, p<0.001). ISSs were similar (ISS >15: 21.4% vs 20.5%, p=0.63), and no difference was observed in mortality after adjustment for covariates (p=0.58).
Conclusions
Linkage to a state trauma registry improved data quality by correcting racial misclassification, allowing for a comprehensive description of injury patterns for the AI/AN population. AI/AN sustained more severe injuries with similar postinjury outcomes to caucasians. Future efforts should focus on primary prevention for this population, including increased use of seat belts and child safety seats and reduction of interpersonal violence and suicide.
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