Background: Chronic Kidney disease (CKD) is prevalent in the population, but also disproportionately affects African Americans. Disparities in care of chronic kidney disease and transplant for African Americans have also been reported. The purpose of this study is to determine the knowledge and reactions of chronic kidney disease patients regarding their disease, as perceived by nephrologists and clinic nurses in South Carolina.
Methods: Using a qualitative approach, key informant interviews were conducted with nephrologists, and three focus groups were held with nurses who specialize in chronic kidney disease. The results were recorded, transcribed, and analyzed using Qualrus software and the Grounded Theory Method.
Results: Dominant themes in the interviews and focus groups include: reaction to chronic kidney disease, differences in race, patient thoughts on dialysis, patient knowledge of types of treatment available, information availability, compliance to treatment, information source, and thoughts on kidney transplantation. The study found that the majority of clinicians agreed that there is typically a wide range of reactions in patients with chronic kidney disease.
Conclusions: The majority of chronic kidney disease patients remain in denial of their diagnosis and do not want to agree to the necessary treatment to improve their condition. In addition, the clinicians reported that the incidence of chronic kidney disease is highest in the African American population and this population of patients typically gets their information on the disease from peers, others they have known that have had renal failure. We find clinicians report that patients typically do not remain compliant to recommended treatment regimens due to lack of knowledge and feelings of denial and fear, and frequently use religiosity as a coping mechanism. Silent progression and complexity of chronic kidney disease frequently result in many patients lacking essential knowledge and developing poor coping mechanisms to seek appropriate follow-up care and prevent progression and optimize outcome. Health care providers are aware of the barriers but may lack the tools and resources to overcome them.