The purpose of this report is to detail the findings of the study ‘Knowledge, Attitudes, Behaviors, And Beliefs about Chronic Kidney Disease in Indiana Minority Communities,’ undertaken as a collaboration between Indiana Minority Health Coalition, Inc. (IMHC) and the Butler University College of Pharmacy and Health Sciences (BUCOPHS). The purpose of the study was to understand knowledge of and beliefs about Chronic Kidney Disease (CKD) among racial/ethnic minorities in Indiana, to learn how these populations would like to receive information about CKD, to understand the factors associated with higher levels of CKD awareness, to estimate the proportion of people with risk factors who have been screened for CKD, and to determine the characteristics associated with people who have been screened.
CKD, the ninth leading cause of death in the United States, is a major public health issue in Indiana. Just over 1 in 5 deaths in Indiana are due to kidney disease, a figure higher than the 14% national average. CKD is especially problematic for racial/ethnic minorities, who are more likely to get the disease, and at earlier ages. They also progress more quickly to End Stage Renal Disease (ESRD), the final stage of CKD, treatable only by lifelong dialysis or kidney transplant. Treatment comes with high costs in terms of public and private money as well as patients’ suffering. Nearly one quarter of the US Medicare budget ($24 billion) is spent caring for people with ESRD. Early detection and treatment of CKD are essential to stopping disease progression, which is irreversible. Most people with CKD are undiagnosed and undertreated, leading to complications and progression of the disease. Diabetes, hypertension, and family history of kidney disease are the most significant CKD risk factors, and it is recommended that adults with any of these should be screened.
Very little is known about knowledge, attitudes, behaviors and beliefs regarding CKD in Indiana’s racial/ethnic minority communities. Because of this, a collaborative, community-based survey project was undertaken by IMHC and the BUCOPHS. Information on socio-demographics (including self-identified race/ethnicity); health status; healthcare access and utilization; CKD screening, knowledge and attitudes toward health,CKD and screening; and preferences for receiving health information were included. The survey was translated in several languages (Spanish, Burmese, Hakka Chin, and Falam Chin) and the translations were verified by native-speaking community members. IMHC engaged 15 community partners in 22 Indiana counties to administer the surveys. Community partners were oriented to the project and trained in survey administration, and surveys were conducted between November 2012 and February 2013.
Surveys from 1,465 eligible respondents were received and scanned into a data base. Survey results were analyzed collaboratively by BUCOPHS and IMHC. Respondents represented four major racial/ethnic groups: African Americans (59%), Hispanic/Latinos (22%), American Indians/Alaskan Natives (11%), and Asian/Pacific Islanders (8%). Forty-four percent were male, and ages ranged from 18 to 92 years (average= 40 years), 20% were born outside of the United States, and 85% spoke English as their primary language. Most (84%) were in good, very good, or excellent health, and the most commonly reported health conditions were high blood pressure (36%), diabetes or arthritis (both 16%), and asthma or obesity (both 14%). Most (70%) had health insurance and a regular healthcare provider (61%), but 25% reported that they were not able to see a provider in the prior year because of cost. Being older, having higher self-rated health, being employed, higher educational attainment, having health insurance, being Hispanic/Latino, and reporting high blood pressure, diabetes, or kidney disease were all associated with more knowledge and awareness of CKD, while being Burmese and not being able to see a provider because of cost were related to less knowledge and awareness. Just over one quarter (29%) of those reporting at least one risk factor had been screened. Increased knowledge and attitude toward kidney disease, having high blood pressure or kidney disease, and having a regular healthcare provider were associated with having been screened among those with risk factors. Respondents preferred to get information in the form of brochures (66%), the internet (57%) or on television (37%); from a doctor (87%), nurse (40%), or family member (37%); at a doctor’s office or clinic (76%), or hospital or health fair (both 58%).
This study’s most critical finding is that only a small minority (28.7%) of those requiring screening actually report that they had been screened for kidney disease. The findings, however, indicate many opportunities to improve knowledge and behaviors among the state’s extremely vulnerable racial/ethnic populations; indeed, they demonstrate that increasing knowledge is an important factor in encouraging at-risk people to undergo screening. It is apparent that all minority populations need, and wish to receive, information on CKD, and that access to screening should be increased. Adoption of provisions of the Affordable Care Act in the next few years, with its emphasis on prevention and establishment of medical homes, may help in promoting screening.
It is apparent that communities need to provide education on the causes and consequences of kidney disease, as well as the importance of prevention and screening for those at risk for CKD. Communities should encourage people to establish and maintain medical homes, relationships with primary care providers who can manage their health conditions and help patients navigate through the healthcare system. Communities need to engage healthcare providers in CKD education. Community-appropriate educational materials, especially brochures and possibly DVDs, need to be developed. It is critical that information be easily understood by those with low education, as they are particularly vulnerable to CKD risk. Education about kidney function and disease is required for adults of all ages.
Although respondents may not be representative of all racial/ethnic minority residents of Indiana and information was obtained directly from respondents rather than medical records (and thus subject to memory lapses and misunderstanding), this study lays the foundations to improve kidney health in Indiana’s health-vulnerable racial/ethnic minority communities
