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Awareness of CKD as an outcome of

  1. 1. NKDEP SURVEY OF AFRICAN-AMERICAN ADULTS’ KNOWLEDGE, ATTITUDES AND BEHAVIORS RELATED TO KIDNEY DISEASE REPORT FROM THE BASELINE STUDY SEPTEMBER, 2003 1
  2. 2. TABLE OF CONTENTS Introduction to the Project............................................................ 5 Methodology....................................................................................5 Data Collection....................................................................................5 Sample Characteristics.....................................................................8 Data Analysis and Reporting ............................................................9 Summary of Findings ..................................................................11 Detailed Discussion of Findings..................................................21 1. Awareness of CKD ...........................................................................21 General Health Problems Affecting African Americans ........................21 Awareness of CKD as an outcome of Diabetes and/or Hypertension ................................................................. 24 Diabetes .................................................................................................24 Hypertension ........................................................................................25 Aided Awareness of CKD ..........................................................................26 Perceived Commonness of CKD ..............................................................27 2. Knowledge of CKD ..........................................................................28 Knowledge of the Definition of Kidney Disease .....................................28 Perceptions Regarding Symptoms of Signs of Kidney Disease ..........32 Perceived Existence of Symptoms .....................................................32 Perceived Symptoms of Kidney Disease ...........................................34 Perceived Causes of Kidney Disease ......................................................36 Perceived Causes..................................................................................36 Aided Awareness of Diabetes as a Cause of Kidney Disease ........38 Aided Awareness of Hypertension as a Cause of Kidney Disease 39 Perceived Risk Factors .............................................................................41 Perception of Family Risk ...................................................................43 2
  3. 3. 3. Prevalence of Risk Factors .............................................................46 Prevalence of Diabetes in the Sample .....................................................46 Prevalence of Hypertension in the Sample .............................................47 Family History of Kidney Failure...............................................................48 4. Experience with Diabetes ...............................................................52 Perceived Seriousness of Diabetes .........................................................52 Negatives Effects of Diabetes ..................................................................53 Knowledge of Routine Tests for Diabetes ..............................................55 Steps Taken by Patients to Manage Diabetes ........................................57 Self-Ratings of Compliance ......................................................................59 5. Experience with Hypertension .......................................................60 Perceived Seriousness of Hypertension .................................................60 Negatives Effects of Hypertension ..........................................................61 Knowledge of Routine Tests for Hypertension ......................................63 Steps Taken by Patients to Manage Hypertension ................................65 Self-Ratings of Compliance ......................................................................67 6. Perception of Personal Risk for CKD ............................................68 Self-Risk Rating ........................................................................................68 Reasons for Self-Risk Rating ...................................................................70 Reasons for higher-than-average self-risk rating ............................72 Reasons for lower-than-average self-risk rating .............................74 Reasons for average self-risk rating .................................................77 3
  4. 4. 7. Screening and Prevention of CKD .................................................80 Knowledge of Tests for Detection of CKD ..............................................80 Frequency of Testing for CKD ..................................................................82 Time Since Last Test ............................................................................82 Perception that CKD is Preventable ........................................................84 Perception that CKD is Treatable .............................................................85 Knowledge of Steps for Prevention/Treatment ......................................86 8. Patients with Kidney Disease ....................................................88 Prevalence of Kidney Disease ..................................................................88 How CKD was Detected ............................................................................88 Test Status of Patients .........................................................................88 Time Since Last Test ............................................................................88 Treatment for CKD .....................................................................................89 Compliance with Treatment ......................................................................89 9. Communicating about CKD ............................................................90 Past-Year Discussions of Kidney Disease ..............................................90 People with Whom Respondents Discussed Kidney Disease...............91 Content of Kidney Disease Discussions with Health Care Providers ....................................................................92 Encouraging Others to be Tested ............................................................93 10.Exposure to Information about CKD...............................................95 Past-Year Recall of Kidney-Disease Related Information .....................95 Sources of Kidney Disease Information .................................................97 Proactive Search for Kidney Disease Information.................................99 Awareness of the Message: You Have the Power to Prevent Kidney Disease.....................................................................100 Appendix Questionnaire........................................................................................... 101 4
  5. 5. INTRODUCTION TO THE PROJECT The National Kidney Disease Education Program (NKDEP) is a pioneering program to reduce the economic, social and human burden of chronic kidney disease (CKD) and kidney failure by encouraging prevention, early detection and treatment of CKD among high-risk individuals and early CKD patients. The first phase of the program is targeted at African Americans who are at higher risk for CKD. In this phase, community-based communication programs are being implemented at four pilot sites1 to educate African-American adults (30 and older) to assess their risk status, to persuade those who are at risk to get tested regularly for CKD and take steps to prevent CKD, and to motivate those who have CKD to take steps to slow its progression. The pilot programs are also educating primary care providers in these communities to monitor at-risk patients more effectively, communicate better with patients regarding CKD, and combat early- stage CKD more aggressively through tighter glycemic and blood pressure control and appropriate medication. This research study, the first-ever comprehensive survey of African Americans’ beliefs, attitudes and behaviors related to CKD, was conducted to provide a baseline for measurement of program effects, and to validate the model of program effects that has guided the development of the program. The results of this study and a follow-up survey will also form the basis of the communication strategy for the next phase of the program. METHODOLOGY Data Collection A telephone survey of adult African-American residents aged 30 and older was conducted between February 13 and April 22, 2003. The purpose of the study was to learn about the target population’s knowledge, attitudes and behaviors regarding kidney disease and its two main medical precursors, diabetes and hypertension. In the first field period, a total of 1,616 interviews were collected between February 13 and April 2, 2003 in four U.S. cities—Atlanta, Georgia; Baltimore, Maryland; Cleveland, Ohio; and Jackson, Mississippi.2. Following the initial field period, an additional 401 interviews were collected in three other U.S. cities (New Orleans, Louisiana; St. Louis, Missouri; and Memphis, Tennessee) between April 10 and April 22, 2003 selected to serve as a composite control site. The pilot and control communities were chosen for inclusion in the study based on their high proportions of African-Americans and for similar demographic characteristics. The survey questionnaire (See Appendix A) was formatted and programmed into the Ci3 WinCati Computer Assisted Telephone Interviewing system. The questionnaire was then pretested among a sample of 11 eligible African Americans aged 30 and older. The pretesting procedures helped to inform project staff on key training issues and assisted in rewording of several response formats. 1 Cleveland, OH; Baltimore, MD; Atlanta, GA; and Jackson, MS. 2 Data collection was performed by the Survey Research Center (SRC) at the University of Georgia. 5
  6. 6. The design of the study called for conducting a total of 400 telephone interviews with African- American residents from a random-digit dial probability sample drawn in each of the four pilot cities and the composite control site. To increase the likelihood of encountering an African- American household, a race-targeting procedure was used: census tracts with 30% or more density of African-American residents were selected to draw the RDD sample in each city. No respondent selection method was used to select the individual interviewed within the household; rather, any African-American age 30 or older was eligible to complete the interview. Interviewing occurred during both day and nighttime hours, and each record in the sample was attempted a minimum of 10 times before a telephone number was retired. Supervisors were assigned to monitor interviewers in progress using both audio and visual monitoring techniques. Assuming the sampling procedure outlined above produced a random sample of the population of interest, the estimated theoretical standard error associated with the sample estimates obtained (n=2017) ranges from .011 (when the population estimate is 50%) to about .005 (when the estimate is 95% or 5%). The corresponding sampling margin of error of the population estimates at the 95% confidence level is 2.2% when the estimate is close to 50% and then declines at the upper and lower ends of the scale.3 The maximum sampling margin of error is about 2.4% for the pilot sites (n=1616), and about 4.9% within each individual city, and across all three cities comprising the composite control site (n = 400). In addition to sample size, the quality of a sample is determined by cooperation rate; that is, the proportion of members of the original sample who provide an interview. The overall cooperation rate for this study was 42.4%, i.e. 42.4% of the eligible respondents contacted for the survey completed the interview.4 Table 1 details results of the telephone procedures for both the pilot site sample and for the control sample. The cooperation rate was slightly higher in the pilot sites than in the control sites. 3 The standard error is used to estimate the sampling margin of error of the estimates (i.e., the probable difference in results between interviewing the entire population of African-Americans 30 and older in the target cities versus taking a scientific sample of the population) that extend 1.96 standard error units around that value (i.e. the 95% confidence level). The standard error is calculated according to the following formula: P +/- 1.96 * (standard error) 4 Cooperation rate was computed using the American Association for Public Opinion Research (AAPOR) guidelines for reporting results of survey. The rate computed here is AAPOR Cooperation Rate 3 (COOP3). COOP3 = Interviews/(Interviews +Partials + Refusals). 6
  7. 7. Table 1: Final Disposition of Telephone Procedures PILOT SITE SAMPLE CONTROL SAMPLE N % Category N % Category Interview Complete 1616 97.2 401 99.8 Partial 47 2.8 1 1.2 Total 1663 100.0 402 100.0 Eligible, Non-Interview Final Refusal 1819 53.5 877 40.4 Resp. Never Available 25 0.7 22 1.0 Ans. Machine 681 20.0 920 42.4 Other Dead 0 0.0 1 0.1 Phys./Mentally Unable 62 1.8 54 2.5 Language Unable 70 2.1 44 2.0 Misc. Unable 2 0.1 5 0.2 Callback, Resp. Not 682 20.1 223 10.3 Selected Callback, Resp. Selected 59 1.7 25 1.1 Total 3400 100.0 2171 100.0 Unknown Eligibility: Non- Interview Unknown if Household Busy 169 13.8 292 15.9 No Answer 913 74.7 1492 81.3 Technical Phone Problems 120 9.8 43 2.3 Unknown: Other 19 1.6 7 0.4 Total 1221 99.9 1834 99.9 Not Eligible Out of sample 2 0.1 0 Fax/Data Line 626 7.6 568 8.2 Non-working number 175 2.1 69 1.0 Disconnected number 1720 21.0 2195 31.6 Technological circumstances Number changed 59 0.7 55 0.7 Cell phone 34 0.4 12 0.2 Call forwarding 163 2.0 112 1.6 Not a household Business/government/other 915 11.2 942 13.5 Institution 9 0.1 1 0.1 Group quarters 0 0.0 0 0.0 No eligible respondent 4493 54.8 3001 43.1 Total 8196 100.0 6955 100.0 Cooperation Rate 46.4 31.4 7
  8. 8. Sample Characteristics Gender There were approximately 2.5 times more women than men represented in the sample population (72% and 28%, respectively). Age The sample was fairly evenly distributed among different age categories with the majority of individuals falling between the ages of 35 and 54. Individuals aged 30 to 34 comprised 15% of the sample population, 28% were aged 35 to 44, 31% were aged 45 to 54, and 11% were aged 65 or older. Income One-quarter of the sample population (413 respondents) did not report their income level. As such, all the income-related descriptive figures are computed based on the 1604 respondents who did report their income level. Of these respondents, one-quarter reported having an income of less than $20K. A larger percentage of respondents in the control sites (31%) reported having an income of less than $20K than did those in the pilot sites (23%). About half of the sample for which incomes were reported (52%) was in the low- to middle- income range, reporting annual household incomes between $20K and $60K per year, 30% of which earned between $20K and $39K. While slightly more than one-quarter of the respondents in the pilot sites (28%) reported having an income of $20K to $39K, a larger percentage of individuals in the control sites (38%) claimed the same level of earnings. About one-quarter of the total sample population (23%) had an income of $40K to $59K. Close to one-tenth (11%) of those who reported their income had an income of $60K to $79K. More than twice as many respondents in the pilot sites (12%) reported having this income than did those in the control sites (5%). Six percent of the valid sample had an income of $80K to $99K, and another 6% earned $100K or more. The percentages for these high-income groups were consistent between the pilot and control site respondents. Education Close to two-thirds of the sample population did not graduate from college and one-third had no more than a high school education. Of the total sample population, 8% had less than a high school education and 23% were high school graduates. Nearly one-third (31%) said they had some college education. A larger percentage of respondents in the control sites (38%) reported having some college education than did respondents in the pilot sites (30%). Less than one-tenth (8%) of the total sample population had graduated from community college (AA degree), while 17% were college graduates, 4% had some graduate school education and 9% held a graduate degree. 8
  9. 9. The table below depicts the breakdown of the total sample by demographic sub-groups and compares each factor to the relevant US population estimates for African Americans.5 Table 2: Comparison of the Sample Demographics to the National Estimates for the African-American US Population Sample (Percent) Population (Percent) Gender Male 28 Male 46 Female 72 Female6 54 Age 30-34 15 30-34 15 35-44 28 35-44 31 45-54 31 45-54 25 55-64 15 55-64 14 65 or older 11 65 or older7 15 Income Less than $20K 25 Less than $20K 25 $20K - $39.9K 30 $20K - $24.9K 8 $40K - $59.9K 23 $25K - $34.9K 14 $60K - $79.9K 11 $35K - $49.9K 15 $80K - $99.9K 6 $50K - $74.9K 15 $100K or more 6 $75K or more8 12 Education Less than High School 8 Less than High School 21 High School Graduate 23 High School Graduate 34 Some College 31 Some College 28 AA Degree 8 College Graduate 17 College Graduate 12 Some Graduate School 4 Graduate Degree 9 Graduate Degree9 5 Data Analysis and Reporting This report presents the overall sample descriptive statistics and variation by specific demographic and medical sub-groups. The information has been grouped into 10 topic areas, and 5 US Census Bureau: The Black Population in the United States; March 2002 (ppl-164). Accessed on July 15th 2003 at: http://www.census.gov/population/www/socdemo/race/ppl-164.html. 6 US Census Bureau: The Black Population in the United States (Table 1); March 2002 (pp1-164). Accessed on October 24, 2003 at http://www.census.gov/population/socdemo/race/black/ppl-164/tab01.xls. 7 US Census Bureau: The Black Population in the United States (Table 1); March 2002 (pp1-164). Accessed on October 24, 2003 at http://www.census.gov/population/socdemo/race/black/ppl-164/tab01.xls. 8 US Census Bureau: The Black Population in the United States (Table 14); March 2002 (pp1-164). Accessed on October 24, 2003 at http://www.census.gov/population/socdemo/race/black/ppl-164/tab14.xls. 9 US Census Bureau: The Black Population in the United States (Table 7); March 2002 (pp1-164). Accessed on October 24, 2003 at http://www.census.gov/population/socdemo/race/black/ppl-164/tab07.xls. 9
  10. 10. the sequence of reporting does not follow the sequence of questions on the survey instrument. The survey instrument is attached for your reference (Appendix 1) and the questions being analyzed are noted at the beginning of each section. As the table in the previous section shows, the sample for this study does not demographically match national statistics for the African-American adult population. Please note that this report reflects marginals based on unweighted data.10 Variation in response across demographic sub- groups is reported when it was statistically reliable or when certain trends or patterns were visible in the data. Respondents were also categorized into several relevant medical classifications. The variable Risk Status identifies those respondents who indicated they had at least one of the three key risk factors: hypertension/high blood pressure, diabetes, or a family history (of a close blood relative) of kidney failure. Patients with Diabetes were identified based on Q6 of the survey where patients were asked if they had ever been diagnosed with diabetes. A similar question (Q10) was used to identify Patients with Hypertension. The variable Family History for Kidney Failure identifies those respondents who reported that a close blood relative (parent, child, sibling or grandparent) had kidney failure. This categorization was based on responses to Questions 24, 24a and 24b. Test Status separated respondents based on whether or not they had ever been tested for the disease (Q7 of the survey). Knowledge of Kidney Disease Definition was derived from the question where respondents were asked what kidney disease is. Respondents who described the disease as a stoppage or reduction of function (response options 5, 6, or 7 to Q12) were categorized as “Understands CKD” and those who did not were identified as “Does not understand CKD.” The sample breakdown with respect to these computed variables is shown below. Total Sample (Percent) Patients with Family History of CKD Diabetes Yes 13 Yes 11 No 86 No 88 Patients with Knowledge of Kidney Hypertension Disease Definition Yes 34 Does not understand 51 No 65 Understands CKD 49 Testing for Kidney At Risk for Kidney Disease Disease Tested 35 At risk 45 Never tested 65 Not at risk 55 10 Once the client has selected an appropriate weighting scheme, results will be updated to reflect the changes. 10
  11. 11. 11
  12. 12. SUMMARY OF FINDINGS 1. Awareness of Kidney Disease • When asked to name the top three health concerns facing African Americans, respondents named Hypertension (61%), Diabetes (55%) and Heart Disease (45%) most frequently (Question 2). Cancer and HIV/AIDS were also mentioned by substantial proportions of respondents. Only 3% mentioned kidney disease or kidney failure. □ Younger respondents were more likely to mention cancer, HIV/AIDS, and, to a lesser extent, diabetes. Mention of hypertension was highest among the middle age groups while mention of heart disease increased among older respondents. □ People with lower incomes were more likely to list cancer and those with higher incomes named hypertension more often. Similarly, those with higher education listed diabetes and hypertension more often, while those with less education mentioned cancer more. □ Those who had diabetes or hypertension, those who had been tested for kidney disease and those who knew what kidney disease is also listed diabetes and hypertension as top health concerns more frequently. • Awareness of kidney disease was also assessed in the context of negative health effects of diabetes and hypertension. When asked to list the negative health consequences of untreated diabetes, only 17% mentioned kidney disease (Question 4). Even fewer (8%) mentioned kidney disease as a negative health outcome of hypertension (Question 8). While respondents who had diabetes and hypertension were more likely to mention kidney disease as an outcome of these illnesses, these proportions were also relatively small; only 29% of patients with diabetes mentioned kidney disease as an outcome of diabetes and 11% of patients with hypertension mentioned it as a consequence of leaving hypertension untreated. • When specifically asked whether they are aware of an illness called kidney disease, virtually all (90%) respondents said yes (Question 11). □ Those with diabetes were more likely to say they are aware of this illness, but awareness was not higher for those with hypertension or a family history of kidney failure. • Most respondents thought kidney disease is somewhat (51%) or very (43%) common (Question 25). This number was fairly consistent across all sub-groups with minor variations in the proportion of people who regarded kidney disease as very common. 2. Knowledge of CKD • When asked to define what kidney disease is, about half (49%) correctly identified it as a stoppage or reduction in kidney function (Question 12). Another 30% gave vague or incorrect responses, including: general disease or ailment of the kidneys (25%), an infection of the kidneys (6%), kidney stones (1%) or a type of cancer (1%). About a fifth (21%) said they did not know or did not remember what kidney disease is. □ Women seemed more knowledgeable than men. Younger respondents and those with more education and income gave both correct and vague/incorrect responses more often, and were less likely to say they do not know what kidney disease is. 12
  13. 13. □ Those who had diabetes and/or hypertension were slightly more likely to be able to define kidney disease correctly but this difference was not large; however, diabetes and patients with hypertension did give vague or incorrect responses. • When asked whether there is anything that would let a person know that they had kidney disease, about two-thirds of respondents (64%) incorrectly indicated that the disease does have symptoms (Question 15a). Only 13% definitively indicated that the disease has no symptoms and 22% said they were not sure. □ Somewhat surprisingly, those in the lowest education and income categories were less likely than more-educated and higher-income respondents to believe that a person would know if they had kidney disease. Also surprising is the fact those who were tested for kidney disease, aware of a family history of kidney failure or able to give an accurate definition of the disease were more likely to say that there are ways to know if one has kidney disease. • When asked to say what would let a person know they had kidney disease, the most common responses were symptoms such as difficulty urinating (38%), general pain (33%) and frequent urination (27%). A few respondents also mentioned more accurate ways of detecting kidney disease—getting tested (6%) or learning this from the doctor (3%). Although people who had diabetes and/or hypertension were less likely to mention some of these symptoms, they were more likely to mention two others—frequent urination and protein in urine (Question 15b). • Nearly half of the sample (48%) was unable to name any causes of kidney disease when this question was asked in an open-ended way (Question 16). Only 16% named diabetes, 14% named hypertension and 3% mentioned genetics or family risk. Other common responses were poor diet (9%) and consumption of soda or pop (8%). While there was some subgroup variation in these responses, the overall awareness of the causes of kidney disease was low in all segments of the sample. □ Patients with diabetes and/or hypertension were somewhat more likely to associate kidney disease with these two conditions and were less likely to give incorrect or inaccurate response. However, only a little over one-third of patients with diabetes (36%) named diabetes and 13% of patients with hypertension identified hypertension as a cause of kidney disease. Those who had been tested and those who understood what kidney disease is were also somewhat more likely to mention diabetes and hypertension as causes of kidney disease. • Respondents were also specifically asked whether they are aware that diabetes and hypertension are leading causes of kidney disease (Question 16a & 16b, respectively). About half (52%) of respondents said that they are aware that diabetes causes kidney disease and about one-third (36%) said the same for hypertension. □ Awareness of diabetes as a cause of kidney disease was impacted by age of respondent as well as risk status, test status and knowledge of kidney disease. Awareness increased with age and exposure to risks or tests, as well as with education level. • Respondents were also asked to say who they believed to be at higher risk for kidney disease (Question 15). About a fifth (18%) mentioned that African Americans are at higher risk; 14% 13
  14. 14. mentioned patients with diabetes; and 12% mentioned patients with hypertension. About one in six respondents (16%) gave responses related to consumption of certain foods and beverages (16%), 8% said that either men or women are at higher risk, 6% said older people are at higher risk and 12% mentioned some other (unlisted) factor. Close to one-third (29%) said they did not know who is at higher risk for kidney disease. □ Women were more likely than men to identify diabetes as a risk factor, while men were more likely to mention risks associated with eating or drinking certain foods or beverages. Identification of diabetes and hypertension of risk factors was also related to income level. □ Those who had diabetes, hypertension or a family history of kidney failure, those who knew what kidney disease is, and those who had been tested for kidney disease were more likely to mention diabetes and hypertension as risk factors. □ Those who had a family history of kidney failure were also more likely to mention African-American race as a factor. They also mentioned genetic risks twice as often as others but the overall frequency of this response was still small (4% vs. 2%). • As mentioned above, the free recall of family history of kidney failure as a risk factor was quite low. When asked specifically how much having a relative with kidney failure increases a person’s risk for kidney disease, 29% said “a great deal”, 42% said “somewhat”, 17% said “a little” and 13% said “not at all” (Question 24c). The remaining 12% said they did not know the answer. □ Women, those who were at risk for kidney disease, those who had been tested for kidney disease, and those who could correctly define kidney disease were more likely to say that a family history of kidney failure affects a person’s risk for kidney disease a great deal. Those with more education were less likely to say that this factor does not affect one’s risk at all. 3. Prevalence of Risk Factors • The prevalence of diabetes in the sample was 13% and that of hypertension was 34% (Question 6 & 10, respectively). These self-reported statistics from seven pilot and control communities match national prevalence estimates of these illnesses for African Americans (13% for diabetes and 35% for hypertension). □ The prevalence of diabetes was 1.5 times higher among women than among men. It was 2.5 times higher among those in the lowest income bracket of less than $20K compared with those who had greater incomes. Similarly, those with the least education reported the highest prevalence of diabetes. □ The prevalence of hypertension was also related to income and education, and, to a lesser degree, to gender of respondents. □ There was significant overlap in these two conditions. Two-thirds of adults with diabetes also had hypertension and about a quarter of adults with hypertension had diabetes. • Family history of kidney failure was ascertained through a series of questions asking respondents if they knew anyone with kidney failure, whether this person was a friend/co- worker or relative, and (if they mentioned a relative) what relationship they had with the person who had kidney failure (Questions 24, 24a & 24b, respectively). Two-thirds of the 14
  15. 15. sample said they knew someone with kidney failure. About half of these said this person was a relative, and about a quarter of that population mentioned a close relative (a parent, sibling, grandparent or child). Overall, 11% of the sample was identified as having a close blood relative with kidney failure. 4. Experience with Diabetes • Virtually all respondents said it is very (85%) or somewhat (6%) likely that someone who did not take care of their diabetes would suffer serious negative effects on their health (Question 3). The proportion of people who said this is very likely was slightly greater among those with more income and education. • When asked to name negative health consequences of uncontrolled diabetes, respondents mentioned amputation (40%) and blindness (36%) most often (Question 4). Only 17% named kidney disease. About 18% said they did not know of any negative health consequences. □ Women named blindness and kidney disease more frequently than men. Men were also more likely to say they did not know any negative consequences of uncontrolled diabetes (24% of men and 18% of women gave this response). □ Respondents with higher income and those with more education, and those with risk factors, named more negative consequences. They also tended to name kidney disease more often. □ Older respondents were more likely to mention heart attacks. • When asked what kinds of tests persons with diabetes should have regularly, 76% mentioned blood tests of some kind (with 60% specifically mentioning a daily blood glucose test and 3% specifying the HbA1c test), 6% mentioned a urine test (with only a handful of respondents identifying any specific urine tests or indices), 2% said eye exams and 1% mentioned foot exams (Question 5). □ Women, older people, those with more income, those with more education, those with diabetes and those who knew what kidney disease is, were more likely to mention a general blood test and/or specify daily blood glucose monitoring. There was some variation in mention of urine tests and/or Hemoglobin A1c tests but the differences were sporadic and no clear pattern emerged. • Respondents who had diabetes (n=269) were asked what steps they have taken to manage their diabetes. In response, 74% mentioned lifestyle changes including diet changes (70%), exercise (36%) and weight loss (7%). About the same number (73%) mentioned medication, including prescription medication (55%) or insulin (23%). Only 3% said they were doing nothing at all to manage their diabetes (Question 6a). □ In general, younger respondents were more likely than older respondents to mention lifestyle changes and older respondents were more likely to mention medication. Those with higher incomes, those with more education, and those who had been tested for kidney disease were more likely to mention both medication and lifestyle changes. 15
  16. 16. • When asked to rate their compliance with their health care provider’s recommendations for managing diabetes on a 10-point scale, the patients with diabetes in this sample gave themselves a mean rating of 7.5 (Question 6b). □ Older people and those who had been tested gave themselves slightly better compliance ratings than younger people and those who had not been tested. 5. Experience with Hypertension • Nearly all respondents indicated that it was very (87%) or somewhat likely (7%) that a person would suffer negative health effects if their hypertension were uncontrolled (Question 7). The subgroup variation on this item was quite small, although there were some statistically reliable differences. • The most frequently mentioned negative consequences of uncontrolled hypertension were stroke (64%) and heart attack (47%). Premature death (18%), kidney disease (8%) and amputation/limb loss (2%) were also mentioned (Question 8). About one in 10 respondents (11%) could not identify any negative consequences of uncontrolled hypertension. □ Women, older people, those with more income, those with more education, and adults with diabetes and/or hypertension identified more negative consequences or were less likely to say they did not know any negative consequences of uncontrolled hypertension. □ Respondents who had hypertension were also more likely to mention kidney disease, but this proportion was still small (10% vs. 6% for those who did not have hypertension). □ Those who had been tested for kidney disease were also more likely to mention kidney disease (11%) than those not tested (6%). • When asked what tests a person with hypertension should have regularly, three-quarters mentioned blood pressure testing, and about 12% mentioned a general blood test (Question 9). Only 2% mentioned urine tests with very few respondents mentioning any specific tests for kidney disease. Nearly a fifth (18%) said they did not know of any tests. □ Following the general pattern seen before, women, those with more income and those with more education were more likely to mention regular blood pressure tests and less likely to say they did not know of any tests that patients with hypertension should have regularly. Knowledge of tests was also related to having hypertension and/or diabetes, and knowing the definition of kidney disease. Across all groups, however, the mention of tests other than blood pressure monitoring was quite low. • The respondents who had hypertension (n=690) were asked what steps they have taken to manage this condition (Question 10a). More than three-quarters (78%) mentioned medication (76%) and/or regular monitoring (5%) and about half (54%) mentioned lifestyle changes including dietary changes (48%), exercise (26%) and weight loss (3%). Almost one in 10 (8%) said that they were doing nothing to control their hypertension. □ As among those who had diabetes, older patients with hypertension were more likely to mention medication while younger respondents were more likely to mention lifestyle changes. Lifestyle changes were also more commonly reported among those with higher income and those with higher education. 16
  17. 17. □ Patients with hypertension who also had diabetes were less likely to report that they exercise regularly to control their hypertension. • The patients with hypertension who responded to this survey rated their compliance with their health care provider’s recommendations for managing their hypertension at 8.2 on a 10- point scale (Question 10b). Older respondents gave themselves a higher rating as did those who had been tested for kidney disease. 6. Perception of Personal Risk for Kidney Disease • When asked to rate their own risk for kidney disease, 15% of respondents rated their risk as higher than average, 32% said it was lower than average, and 46% thought it was average (Question 17). About 8% said they did not know their risk level. □ Older people were more likely to regard themselves at higher risk. People in the lower income and education categories also leaned towards high- or average-risk ratings and tended to give themselves low-risk ratings less often. □ Respondents’ self-ratings were related to their actual risk status. About a quarter of those who had any of the risk factors for CKD (26%) rated themselves at high risk, compared to 8% of those who were not at risk. On the other hand, an almost equal proportion of high-risk respondents (22%) rated their risk as lower-than-average, with the rest (about half) saying their risk is about average. □ Among high-risk people, those with diabetes were most likely to place themselves in the high-risk category. About two-fifths of them (42%) identified themselves as having higher-than-average risk compared to a quarter of patients with hypertension and 19% of those with a family history of kidney failure. • Respondents were asked to give reasons for their personal risk ratings (Question 18). The three most common categories of responses were those related to general lifestyle or weight- management issues (24%), those related to the respondent’s disease status and/or disease management (20%), and those related to their family’s health (general health or presence or absence of specific conditions). A tenth of respondents gave reasons related to consumption of water or soda/pop; 6% mentioned presence or absence of symptoms; and 3% mentioned taking their medications. About a fifth (20%) gave some other (unlisted) reason and 16% said they did not know why they had assigned themselves to a particular risk category. □ Older respondents were more likely to give responses related to their disease status and less likely to base their risk rating on their family’s health. □ Those with diabetes and hypertension were several times more likely than those who did not have these illnesses to mention disease-related factors as well as family health-related factors. Those with a family history of kidney failure were more likely to mention that factor, but no more likely than others to mention disease-related factors. Those with any of the risk factors were less likely to estimate their risk based on general lifestyle and weight-related factors. □ Those who understood what kidney disease is and those who had been tested for it were also more likely to estimate risk based on disease status. Those who had not been tested were more likely to cite family health-related factors. 17
  18. 18. • Those who said their risk for kidney disease is higher than average (n=297) most often mentioned the fact that they had hypertension (33%) and/or diabetes (31%). About a fifth (22%) of those who gave themselves a higher-than-average rating mentioned family history of kidney disease as a factor affecting their risk, and 10% mentioned the fact that they are African American. □ In general, younger people tended to mention family history more often while older people tended to mention diabetes or hypertension (probably because of the greater prevalence of these illnesses in the higher age groups). □ Those with risk factors for CKD were more likely to attribute risk to diabetes, hypertension or race than those not at risk, and somewhat less likely to attribute it to their family’s health status. • Those who said their risk for kidney disease is lower than average (n=635) most often mentioned general lifestyle factors such as the fact that they have a healthy diet (34%), exercise regularly (23%) and drink lots of water (15%). About a tenth of this group mentioned the fact that they did not have a family history of kidney disease (12%) or that they have a generally healthy family (10%). Fewer gave disease-related reasons, i.e. that their hypertension or diabetes is controlled (8% and 4% respectively). More than a quarter (27%) gave some other (unlisted) reason, and 9% said they thought they are at low risk because they had no reason to think they are at high risk. □ Younger respondents and those in the higher educational categories were more likely to attribute their low risk to exercise, diet or to the fact that they had no reason to think that they are at high risk. □ Those who had risk factors for CKD were more likely to attribute lower risk to well- controlled hypertension, well-controlled diabetes, or to the fact that they take their medication regularly. • About half the sample (n=930) said their risk is average. More than a quarter (28%) gave reasons related to weight or lifestyle factors, about a fifth (19%) gave some disease-related response, a similar proportion (20%) said they did not know why their risk is average, and 17% mentioned their family’s health (or lack of health) in this regard. □ Respondents at the pilot sites were more likely than those at the control sites to give a disease-related response on this question (21% vs. 13%). □ Those who had risk factors were more likely to give disease-related responses. 7. Screening and Prevention of Kidney Disease • When asked what tests can be used to detect kidney disease, 58% of respondents did not know or did not answer the question (Question 21). Most of those who answered gave relatively vague responses—“blood test” (24%) and “urine test” (23%). □ People who had been diagnosed with diabetes, those who had a family history of kidney failure, those who had been tested for kidney disease, and those who could correctly describe what kidney disease is were more likely to give a more specific response (such as serum creatinine, urine protein, etc.) but these numbers were still low and no more than 7% of any sub-group mentioned a specific test or indicator for kidney disease. 18
  19. 19. • A little more than one-third of respondents (36%) reported that they had been tested for kidney disease (Question 13b). □ Men were more likely than women to be tested (42% vs. 33%), as were older respondents. People at the highest and lowest ends of the education scale were somewhat more likely to have been tested than those in the middle ranges. □ People with diabetes and hypertension were more likely to have been tested. However, those with a family history of kidney failure were no more likely than others to have been tested. • When asked to rate the preventability of kidney disease on a 10-point scale, a little more than one-tenth (12%) of the sample said they did not know (Question 19). For those who responded, the mean scale rating was 6.8. □ People with higher incomes and those with more education gave higher-scale ratings than those with lower incomes and education, indicating a greater belief that kidney disease is preventable. • Similarly, when asked to say how treatable kidney disease is, about a tenth (9%) of the sample said they did not know (Question 20). For those who responded, the mean scale rating on a 10-point scale was 7.5. This rating suggests that people had greater faith in treatment of kidney disease than in its prevention. □ The perception that kidney disease is treatable increased with age of respondent. On the other hand, people with a high school education or less were less likely than others to see kidney disease as a treatable illness. • Despite strong beliefs that kidney disease is both preventable and treatable, relatively few people could name specific ways to prevent the illness or stop its progression (Question 22). One-third of respondents could mention no ways of preventing or treating kidney disease. Only a tenth mentioned controlling diabetes and 12% mentioned controlling hypertension. The most common responses to this question were general healthy practices such as having a healthy diet (34%) and drinking lots of water (27%), followed by exercising regularly (15%). □ Diet and exercise were mentioned most often by the youngest respondents (30-34 years) and their salience declined with age. These two behaviors were also mentioned less often by lower income and education groups. □ At-risk respondents, those who had been tested, and those who could correctly define kidney disease were somewhat more likely to mention specific kidney-disease prevention and treatment behaviors such as controlling diabetes and hypertension, and taking prescription medication, but no more than a fifth of any subgroup mentioned these ways of preventing CKD or slowing its progression. 8. Patients with Kidney Disease • Twenty-two respondents, or 1.1% of the sample population, indicated they had kidney disease (Question 13). The majority of these self-reported CKD patients (19 individuals) said 19
  20. 20. a doctor or a health care provider told them they had kidney disease, and most (18) said they had been tested for kidney disease (Question 13a). • When asked how they are being treated for their kidney disease, eight reported they were using medication, six said hemodialysis/dialysis at a center, three said they had made general dietary changes, 10 said they were treating it using other means, and two individuals said they did not know and/or did not remember how their illness is being treated (Question 13d). • When asked to rate their level of compliance with their health care provider’s recommendations for treating kidney disease, most respondents (18 of 22) said they followed their provider’s recommendations fairly well, giving themselves scale ratings of 8 (4 people), 9 (3 people) or 10 (11 people) on a 10-point scale (Question 13e). Two individuals rated themselves at 3 and two gave themselves a rating of 5. 9. Communicating about Kidney Disease • Relatively few respondents (23%) reported that they had discussed kidney disease with someone in the past year (Question 23). □ Past-year discussions occurred more often among persons with more education, those who had been tested for the disease, those at risk for CKD (particularly, those with diabetes or a family history of kidney failure), and those who understood what kidney disease is. Women were also more likely to say they had discussed kidney disease in the past year than were men. • Among those who reported having a conversation about kidney disease in the past year, the largest proportion (39%) said they had had a conversation with a doctor (Question 23a). This corresponds to 9% of the total sample. In addition, about 7% of the total sample reported having a conversation with a friend or relative, 5% specifically said they had talked with a friend or relative with kidney disease or kidney failure, and about 2% said they talked with a friend or relative who has diabetes or hypertension. • The people who had discussed kidney disease with their doctor were then asked what their doctor had told them during that discussion (Question 23b). The most common advice/information mentioned by this small sample was as follows: to be tested regularly (31 respondents), that they should control diabetes to prevent or control kidney disease (29 respondents), that they should control hypertension to prevent/control kidney disease (27 respondents), that they are at risk (21 respondents), or that they need a change in their medication (12 respondents). Another 83 respondents gave some other (unlisted) response. • Fourteen percent of all respondents reported that they had encouraged someone else to be tested for kidney disease (Question 26).11 Of these, 8% said they had given this advice to a friend and 5% said they had advised a friend or coworker, and 2% mentioned someone else (Question 26a). Of the 162 respondents that mentioned that they had given this advice to a relative, about one-third (31%) said they gave this advice to their child, 28% mentioned a parent and 21% a sibling, with the remainder mentioning a non-blood relative or more distant relative. 11 This figure might over-estimate the true number, as some might be giving the “socially desirable” answer. 20
  21. 21. □ Women were more likely than men to say they had encouraged someone to get tested for kidney disease, as were people 65 and older. □ Persons who had a family history of CKD were twice as likely as those who did not to have encouraged someone to be tested (25% vs. 13%). Those who had been tested for CKD were also much more likely to encourage others (23% vs. 9%). 10. Exposure to Information about Kidney Disease • Less than one-third (29%) of respondents recalled seeing, hearing or reading any information on kidney disease in the past year (Question 27). □ Exposure to information was related to respondents’ age, with a greater proportion of older people reporting exposure to information. Exposure was also modestly related to respondents’ income and education. □ Those who had any or all of the risk factors for kidney disease were more likely to have been exposed to information on kidney disease; 35% of patients with diabetes, 31% of patients with hypertension and 37% of those with a family history of kidney disease reported seeing, hearing or reading information on kidney disease in the past year. Similarly, those who had been tested for kidney disease and those who could correctly define it were more likely to say they had seen, heard or read information on this topic in the past year. • Those who reported exposure to kidney disease-related information were asked to say where their exposure had occurred (Question 27a). Doctor’s office was the most common response to this question, with about two in five (37%) of those who had been exposed to information mentioning this source. About a quarter of those who had been exposed mentioned newspapers or magazines, 16% mentioned brochures, 8% mentioned TV, 6% the Internet, 5% a dialysis clinic and 3% an education class. About a fifth (18%) gave an “other” (unlisted) response to this question. □ More men than women named TV as a source. Those with less income also mentioned TV more frequently. Among those with less than a college education, both TV and brochures were mentioned more frequently than by those with a college education or more. □ Older patients mentioned newspapers and magazines more often than younger patients. Almost one-third of those 55 and older (31%) named this source, almost as many as those that mentioned doctors’ offices. • Less than one-third (29%) of those who reported seeing or hearing something about kidney disease in the past year said they had actively sought out this information (Question 27b). □ Women and college graduates, those with risk factors, those who had been tested for kidney disease, and those who understood what kidney disease is were more likely to say they had actively sought information on kidney disease. • Fourteen percent of respondents indicated that they had heard or read the NKDEP campaign message: You have the power to prevent kidney disease (Question 27c). This erroneous recall was nearly identical in the pilot and control communities. 21
  22. 22. DETAILED DISCUSSION OF FINDINGS 1. Awareness of CKD General Health Problems Affecting African Americans: Top of mind mention of CKD as a health problem Q2: In your opinion, what are the three most serious health problems facing African Americans today? Hypertension or high blood pressure, named by 61% of respondents, was the most frequently mentioned health problem. Diabetes and heart disease rounded out the top three, named by 55% and 45% of respondents, respectively. Just 3% of respondents named kidney disease, ranking eighth among the total sample. It is interesting to note that while there were several differences in frequency and rank of response by demographic and medical sub-groups, mention of kidney disease was relatively flat throughout all sub-samples. Top Health Problems Facing African Americans Today (Percent, Multiple Responses Permitted) Hypertension/high blood pressure 61 Diabetes/sugar/sugar diabetes 55 Heart disease/stroke/heart attack 45 Cancer 35 AIDS/HIV 26 Obesity/overweight 7 Kidney disease/kidney failure/End Stage 3 Renal Disease Lack of insurance 2 Access to healthcare 1 Accidents 1 Poverty 1 Violence 1 Other 19 Don’t know/Don’t remember 9 Sub-group Differences Gender Approximately two-thirds of women said hypertension (64%) or diabetes (59%) is a chief health concern, compared to just one-half of men who gave the same responses (54% and 43%, respectively). 22
  23. 23. Age Younger respondents were more likely than their older counterparts to indicate that AIDS/HIV, cancer or diabetes are top health concerns for African Americans. Thirty-six percent of those less than 35 years of age mentioned AIDS or HIV, compared to just 13% of those over the age of 65. Similarly, 37% of 30 to 34 year-olds believed cancer was a top health problem, and just 28% of seniors concurred. The proportion of 30-34 year-olds who mentioned diabetes was 59% (compared to 51% of the eldest respondent group). Diabetes was the most frequent health problem named by the youngest age group. Fifty-nine percent of respondents under 35 years-old listed diabetes, while 49% of that age group identified hypertension, the most common response for the total sample. More than half of those over 64 years-old (56%) believed heart disease to be a serious health problem for African Americans. In contrast, just one-third of 35 to 44 year-olds (34%) gave the same response. Mention of hypertension was higher among those between the ages of 35 to 54. Approximately two-thirds of those 35 to 54 (66%) claimed hypertension is a top health problem for African Americans, compared to about one-half (49%) for those under 35 years, and 54% for those 65 and older. Income In general, respondents with higher incomes were more likely to list hypertension as a top health concern for African Americans. About half (56%) of respondents in households earning less than $20K annually mentioned hypertension, while two-thirds (69%) of those with annual household incomes of $80K or higher gave that response. The proportion of people that mentioned diabetes also varied by income level, but there was no consistent pattern in this variation. One-half of respondents making less than $20K (51%) and those making $40K to $59K (50%) annually said diabetes is a top health concern. However, about six in 10 (between 59% and 61%) of respondents from all other income brackets made the same claim. The proportion of respondents that mentioned HIV/AIDS as a top health concern was highest (33%) in the middle-income group of $40K to $59K, but fell to about 20% for the highest and lowest income groups. Education Highly educated respondents were more likely to mention hypertension and diabetes as top health concerns than those with less education. About two-thirds of those with some graduate schooling or a graduate degree mentioned hypertension (64%) or diabetes (62%), whereas about one-half of those with a high school diploma or less gave the same responses (56% and 46%, respectively). Those with less education seemed to mention cancer more often. Four in 10 respondents with a high school education or less (40%) mentioned cancer as a primary health concern for African Americans, higher than college graduates (31%) and those with a graduate education (29%). 23
  24. 24. Location There were no significant differences between the pilot and control sites on this item. However, there was some variation among the pilot sites: □ More Atlanta residents (37%) mentioned AIDS/HIV than any other pilot site or the control group. In contrast, just 16% of respondents in Jackson mentioned AIDS/HIV. □ Nearly six in 10 Jackson respondents (59%) said diabetes is a chief health concern compared to about half (52%) of Baltimore and Atlanta residents. □ Jackson residents (51%) mentioned heart disease more often than did respondents from all other cities, especially Cleveland (39%). □ Fewer Baltimore residents (56%) believed hypertension is a top health problem for African Americans compared to the other pilot sites (64%). Risk Status Respondents who were at risk for kidney disease were more likely to list hypertension (64%), diabetes (61%) and/or heart disease (48%) than those not at risk (58%, 49% and 42%, respectively). They were less likely to mention AIDS/HIV and cancer. About a fifth (20%) of at-risk respondents mentioned AIDS/HIV compared with 31% of those not at risk. Similarly, 31% of at- risk respondents said cancer is a top health problem, but nearly four in 10 (39%) of those not at risk cited cancer. Diabetes was the top ranked response for those who had diabetes. Over three-fourths of patients with diabetes (78%) mentioned diabetes as a top health concern, in contrast to just 51% of those not diagnosed with diabetes. Similarly, 67% of patients with hypertension cited this health problem as a top health concern for African Americans, while fewer (57%) of those who do not have hypertension gave that response. Fewer patients with hypertension or diabetes mentioned AIDS/HIV (10% and 17% respectively) than did respondents not diagnosed with either problem (28% and 30% respectively). The same pattern held true for cancer responses among these groups. Respondents with a family history of kidney failure mentioned diabetes more frequently (66%) and hypertension/high blood pressure less frequently (55%) than those with no family history of the illness, of whom 53% named diabetes and 62% listed hypertension. Test Status Those who had been tested for kidney disease were a little less likely to mention cancer and HIV/ AIDS as top health problems, but these differences were not large (32% vs. 37% for cancer and 22% vs. 28% for HIV/AIDS). Knowledge of CKD Definition Respondents who knew that kidney disease is a reduction in kidney function were more likely to mention diabetes (58%) and/or heart disease (50%) as key health problems for African Americans. Those who do not understand kidney disease had lower frequencies of response for both diabetes (51%) and heart disease (40%). 24
  25. 25. Awareness of CKD as an Outcome of Diabetes and/or Hypertension Diabetes Q4: As you may know, many African Americans have diabetes or sugar diabetes. If a person does not take care of their diabetes, do you have any idea of what the negative effects might be? While approximately four in 10 respondents were able to name several consequences from loss of a limb (40%) to blindness (36%), just 17% mentioned kidney disease in this regard. Awareness of kidney disease as a negative health consequence of uncontrolled diabetes varied by age, education, gender, location as well as risk for CKD, experience with diabetes or hypertension, and knowledge of CKD definition. Sub-group Differences Gender About a fifth of the women surveyed (19%) recognized kidney disease as a probable outcome of diabetes, compared to 12% of men. Age Mention of kidney disease tended to increase with age of respondent, although this pattern was not entirely consistent. Fifteen percent of respondents 30 to 34 years old mentioned kidney disease as a consequence of not treating diabetes, while one-fifth of respondents over 64 years of age (21%) gave that response. Education Nearly twice as many respondents with at least some graduate schooling mentioned kidney disease as a consequence of uncontrolled diabetes (23%) than did those with a high school diploma or less (13%). Location The difference between the pilot and control sites on this question was not significant. Among the pilot sites, more respondents in Jackson (23%) and Baltimore (19%) identified kidney disease as a consequence of not treating one’s diabetes than did Atlanta and Cleveland residents (14% and 16% respectively). Risk Status One-quarter of at-risk respondents (24%) identified kidney disease as a possible outcome of diabetes, compared to 12% of those not at risk. About one-quarter of patients with diabetes (29%) and patients with hypertension (22%) mentioned kidney disease as a negative health outcome of uncontrolled diabetes compared with 15% of those not diagnosed with diabetes or hypertension. More respondents with a history of kidney failure in the family identified kidney disease (32%) as a possible outcome compared to 15% of respondents with no such family history. 25
  26. 26. Knowledge of CKD Definition One in five respondents who correctly identified kidney disease as stoppage or reduction in kidney function (21%) recognized CKD as a possible outcome of untreated diabetes, while only 13% of those unclear about CKD also mentioned kidney disease. Hypertension Q8: As you may know, many African Americans also have high blood pressure or hypertension. If a person does not take care of their high blood pressure, do you have any idea of what the negative effects might be? Stroke was the most common response to this question, garnering 64% of responses, followed by heart attack among 47% of the sample. Again, kidney disease was recognized by very few respondents as a potential consequence of leaving hypertension untreated (8% of the total sample). Location, respondents’ test status, and hypertension patient status affected the frequency of mention of kidney disease for this question. Sub-group Differences Location There was no difference on this question between pilot and control sites. Among the pilot sites, respondents residing in Jackson identified kidney disease as an outcome for untreated hypertension more frequently than those in Atlanta and Baltimore (11% vs. 6%). Risk Status Slightly more respondents diagnosed with hypertension (10%) referred to kidney disease as a possible outcome if their condition went untreated than did those who did not have hypertension (6%). Test Status One in 10 respondents tested for kidney disease (11%) mentioned it as a negative effect of leaving hypertension untreated, and only 6% of respondents who had not been tested for CKD gave the same response. 26
  27. 27. Aided Awareness of CKD Q11: Have you ever heard of an illness called kidney disease? Nearly all respondents (90%) were aware of the illness. Gender, age, household income level, diabetes patient status and knowledge of CKD definition impacted levels of awareness. There were no differences on this item between the pilot and control communities. Sub-group Differences Gender More women (92%) were aware of kidney disease than men (85%). Age More respondents between the ages of 45 and 54 were aware of kidney disease (93%) than those aged 35 to 44 (87%). Income Eight in 10 (83%) respondents whose households earn between $60K and $80K were aware of kidney disease, compared to approximately 90% of those in lower income brackets. Risk Status More patients with diabetes (94%) were aware of kidney disease than those who have not been diagnosed with diabetes (89%). Knowledge of CKD Definition Ninety-four percent of those who could correctly define kidney disease claimed to be aware of the illness, compared to 86% of those who did not understand the disease. 27
  28. 28. Perceived Commonness of CKD Q25: How common do you think kidney disease is? Would you say it is very common, somewhat common, not common or very rare? Most people (93%) thought kidney disease was somewhat (51%) or very common (43%). This number was fairly consistent across most demographic categories, with some small variations in the proportion of people who regarded it as very common. Sub-group Differences Gender More women than men regarded kidney disease as very common (46% vs. 33%). Income The proportion of people who regarded kidney disease as very common ranged from 25% in the highest income category ($100K+) to 50% in the $20K to $39.9K category, but no clear pattern emerged. Education The proportion of people who regarded kidney disease as very common was greatest in the lowest education category (less than high school, 57%) and lowest in the highest education category (graduate degree, 33%), with most of the middle categories converging around the overall mean. Location There was a slight difference between the pilot sites and the control sites on this question, with 48% of the people in the control sites reporting that kidney disease is very common compared with 41% of those in the pilot sites. Among the pilot sites, more respondents in Jackson said that kidney disease is very common (51%) than in Atlanta (39%). 28
  29. 29. 2. Knowledge of CKD Knowledge of the Definition of Kidney Disease Q12: Can you tell me what you think kidney disease is? The table below shows all the responses given for this question aggregated into key response categories. It shows that only about half the respondents were correctly able to define what kidney disease is. The others gave vague or incorrect responses to this question or were not able to give a response, indicating that the African-American public’s knowledge of this condition is inaccurate or incomplete. In response to this question, a small proportion mentioned causes or risk factors for kidney disease, or the fact that it leads to dialysis, kidney failure or death. Responses varied by gender, location, age, income and education as well as several medical categories, details of which are described below. To a certain degree, those with experience with diabetes or hypertension seemed to have a heightened understanding of kidney disease, but even these sub-samples did not exhibit a solid grasp of the illness. Descriptions and Definitions of Kidney Disease (Percent, Multiple Responses Allowed) Stoppage/Reduction in Function 49 Stoppage: Kidneys stop working 25 Unspecific reduction: Functioning is reduced/Don’t work as well 21 as they should Specific reduction: Inability to filter blood of waste, water and/or 13 chemicals Vague/Incorrect Definitions 30 General disease or ailment of the kidneys 25 An infection of the kidneys 6 Kidney stones 1 A type of cancer 1 Mention of dialysis/ESRD 8 Ultimately/eventually leads to kidney failure/dialysis/kidney 4 transplant If not treated leads to kidney failure/dialysis/kidney transplant 3 Immediate need for dialysis or a kidney transplant 2 Mention of Causes or Risk Factors 7 Diabetes causes 5 Hypertension/high blood pressure causes 4 Family members of people with kidney failure/kidney disease at 1 risk Other specific race (not African American) at risk/happens to - other race Mention of symptoms of some kind (e.g. urinating too much or too 2 little) Deadly illness/something that kills you 1 Don’t know/Don’t remember 21 29
  30. 30. Sub-group Differences Gender In general women appeared more knowledgeable about kidney disease than men. A little over half of the women in the sample (52%) mentioned stoppage or reduction in kidney function, while 44% of men gave that response. In addition, women identified the potential for kidney transplant and/or dialysis more frequently than men (10% compared to 4%). Lastly, more men were unable to explain kidney disease at all; 26% said they don’t know what it is, compared to 19% of women. Age Younger respondents were more likely to give both correct and incorrect/vague definitions of CKD. More than one-half of this same young age group (55%) indicated kidney disease is the reduction of stoppage of kidney function, compared to around 50% of the middle age groups and 36% of those 65 and over. On the other hand, over one-third of respondents ages 30 and 34 (36%) offered a vague or incorrect description of kidney disease, compared to 27% of those over 54 years of age. People in the 65+ age category were more likely than those in the other groups to say that they did not know or did not remember what kidney disease is (29% vs. 20% for all the other age categories combined). In contrast, older respondents were more cognizant of risk factors associated with kidney disease —especially diabetes— than were younger respondents. Almost one-fifth of respondents over 54 years of age (18%) named relevant causes of kidney disease (and 16% named diabetes). Only two percent of those between the ages of 30 and 34 named any causes for kidney disease (1% said diabetes). This may be due to a higher prevalence of diabetes among the older respondents. Mention of dialysis or kidney transplant peaked at ages 45 to 54, exhibiting a U-shaped trend. Twelve percent of respondents between the ages of 45 and 54 gave comments related to ESRD, and just 7% of those over 54 years and 7% of respondents 35 to 44 years-old described kidney disease in the same manner. Income Higher household income groups gave more descriptions of kidney disease than lower-income household respondents. One-third of those making less than $20K (32%) said they did not know or did not remember what kidney disease is, compared with only 16% of those earning $60K or more annually. Similar to the trend by age, higher income earners offered both correct and incorrect descriptions more often. One-third of respondents earning $60K or more (35%) gave vague or incorrect responses compared to just 20% of those making less than $20K annually. And over half (54%) of the high-wage earners mentioned kidney function stoppage or reduction while about four in 10 of the lowest income group (41%) gave the same description. Education Higher-educated respondents identified kidney disease as a stoppage or reduction in kidney function more often. Six in 10 of respondents with a four-year college degree or more schooling (60%) gave that response, more than those with some college or a two-year degree (50%) and those with a high school diploma or less (37%). 30
  31. 31. Those with a high school education or less were also more likely to say they did not know what kidney disease is. One-third of this group (31%) did not know how to describe kidney disease compared with just 19% of those with some college or an Associate’s degree and 13% of respondents with a four-year college degree or more. Once again, while higher education groups were more likely to give a response, they were also more likely to give vague or incorrect responses. About a fifth (22%) of respondents with a high school diploma or less education gave vague or incorrect definitions of kidney disease compared with one-third (33%) of those in other education categories. Location Respondents in the pilot locations were as likely as those in the control sites to describe kidney disease with some reference to a stoppage or reduction in kidney function. However, more respondents in the control locations were unable to describe kidney disease than those in the pilot site. Twenty-eight percent of control location respondents said they don’t know what the disease is, and just 20% of pilot location respondents gave the same response. There were no significant differences by location in the frequency of mention of the incorrect or vague (infections, stones, cancer or general ailments of the kidney) responses. However, twice as many respondents in the pilot site locations (8%) mentioned primary risk factors for CKD— namely diabetes and hypertension—in response to this question than did the control site respondents (4%). Risk Status Respondents at risk for CKD were somewhat less likely to give vague or incorrect definitions of kidney disease than those not at risk (26% vs. 34%). They were also more likely than those not at risk to mention risk factors for kidney disease, although the overall proportion that mentioned risk factors in response to this question was still low. One in 10 respondents at risk for kidney disease (11%) identified medical risk factors associated with the disease, compared with 4% of those not at risk. Specifically, among those at risk, 7% named diabetes and 6% mentioned hypertension as possible causes for the disease, while just half as many respondents at risk mentioned these causes (3% named diabetes and 2% named hypertension). Patients with Diabetes Not surprisingly, patients with diabetes were more knowledgeable about kidney disease than those not diagnosed. This apparent knowledge was shown in the higher frequency of accurate descriptions and the lower frequency of don’t know or vague responses given by this group as described below. The frequency of patients with diabetes that correctly identified kidney disease as a stoppage/reduction in kidney function was only slightly higher than those who did not have diabetes (54% vs. 49%). Patients with diabetes were also less likely to give vague or incorrect responses; less than a quarter of patients with diabetes (23%) gave such a response compared with about one-third (32%) of those not diagnosed with diabetes. Similarly, one in six respondents with diabetes (16%) said they did not know what kidney disease is, compared to about one in four (22%) respondents not diagnosed with diabetes. Respondents with diabetes identified risk factors for kidney disease more often than those not diagnosed with the disease. Almost three times as many patients with diabetes as non-patients named possible medical causes for kidney disease (15% vs. 6%). Thirteen percent of patients 31
  32. 32. with diabetes identified their illness as a possible risk factor for kidney disease, and just 3% of those not diagnosed with diabetes made the same connection. Likewise, one in 10 patients with diabetes also noted that hypertension could cause kidney disease compared to 3% of respondents who reported they did not have diabetes. Sixteen percent of patients with diabetes identified a connection between kidney disease and ESRD, twice as many as respondents not diagnosed with diabetes (7%). Specifically, 8% of respondents with diabetes (and just 3% respondents who do not have diabetes) mentioned that kidney disease ultimately leads to kidney failure, and/or the need for dialysis or transplant. Patients with Hypertension Like patients with diabetes, those diagnosed with hypertension also appeared to be somewhat more knowledgeable about kidney disease. A quarter of patients with hypertension gave a vague or incorrect response to this question compared to about one-third (34%) of those not diagnosed. Risk factors for kidney disease were mentioned more than three times more often by patients with hypertension (13%) than those who did not have that health problem (4%). Similarly, triple the percentage of respondents diagnosed with hypertension (7%) than those not diagnosed (2%) also indicated hypertension could cause kidney disease. Finally, slightly more respondents with hypertension recognized that dialysis or kidney transplant or failure could result from kidney disease (11% compared to 7% of those not diagnosed with hypertension). Family History of Kidney Failure Nearly six in 10 respondents who have a family history of kidney failure (57%) accurately identified the ailment as a stoppage or reduction of kidney function, compared to less than half (48%) of those who have no family history of the disease. Also, fewer respondents with a family history of kidney failure than those who have no family history of the disease were unable to describe kidney disease (14% vs. 22%). Test Status Respondents who had been tested for kidney disease appeared slightly more knowledgeable about the disease than those who had not been tested. Respondents tested for kidney disease gave an accurate description of the disease and identified risk factors and consequences of the disease with somewhat greater frequency than those not tested. A little over half of those tested (53%) correctly identify the illness as a stoppage or reduction of kidney function, compared to 48% of those not tested. Conversely, nearly three in 10 respondents not tested were unable to describe the disease at all (28%), compared to 23% of respondents tested for kidney disease. The proportion of tested respondents that mentioned a medical risk factor for the disease (10%), was almost double the proportion of those who had not been tested (6%). This ratio was similar for specific mentions of diabetes (7% to 4%) and hypertension (6% to 2%) as risk factors. More than one in 10 respondents tested (11%) also made the connection between kidney disease and ESRD, compared to 7% of respondents not tested. 32
  33. 33. Perceptions Regarding Symptoms or Signs of Kidney Disease Perceived Existence of Symptoms Q15a: Is there anything that would let a person know they had kidney disease? About two-thirds of respondents (64%) incorrectly indicated that the disease does have symptoms. Only 13% definitively said that kidney disease has no symptoms, and nearly double that percentage (22%) were unsure. The proportion of people who believed that kidney disease has some symptoms varied with income, education, family history of kidney failure, test status and knowledge of CKD. Interestingly, respondents with more than $20K annual income or more than a high school education were more likely to think there is something that would let a person know they had CKD. Similarly, more respondents who were tested for kidney disease, aware of a family history of kidney failure or able to give an accurate definition of the disease, said there were ways to know if one has kidney disease. This conflict indicated that although their circumstances may have increased their awareness of the disease, they did not necessarily possess accurate information regarding its (lack of) symptoms. Sub-group Differences Income Fewer respondents earning under $20K annually (58%) than any other income group believed there was a way for a person with kidney disease to know they had the disease (58% vs. about 67% for all other income groups combined). Education Just over one-half of respondents with a high school education or less (53%) believed that there was something that would let a person know they had kidney disease, compared to 69% of respondents with at least a bachelor’s degree, and 70% of those with some college or a two-year degree. Risk Status Three-fourths of respondents with a family history of kidney failure (75%) indicated there was a way for someone to know if he/she had kidney disease, much more than those with no family history (63%). Test Status Seventy percent of respondents who have been tested for kidney disease said there was a way to know if one had the disease, and 61% of those not tested concurred. Knowledge of CKD Definition Seven in 10 respondents who were able to describe kidney disease as a reduction or stoppage of kidney function (70%) said there was a way to know one had the disease. Significantly fewer 33
  34. 34. respondents who did not describe the disease in that manner (64%) believed that kidney disease has symptoms. 34
  35. 35. Perceived Symptoms of Kidney Disease Q15b: How would someone know they had kidney disease? Those who said there are symptoms for kidney disease (n=1294) specifically named difficulty urinating (38%), general pain (33%) and/or frequent urination (27%) as possible indicators. A few respondents gave more accurate ways to know one had kidney disease: getting tested (6%), or their doctor would tell them (3%).12 Only about 3% (65 respondents) gave only these two responses without also naming some other symptoms. While there was some variation of response by age, income and education, no pattern of responses emerged. Subgroup differences were more systematic for gender, location, risk status, disease status, family history, test status and knowledge status. These are described below. Sub-group Differences Gender Women were more likely than men to say difficulty urinating (42% compared to 29%) or swelling/edema (14% for women and 10% for men) would constitute warning signs that one had kidney disease. Twice as many men indicated that medical tests (10% for men, 5% for women) or doctor explanations (5% for men, 2% for women) are ways to know if a person has kidney disease. Location Slightly more pilot location respondents indicated that medical tests are a way to determine if a person had kidney disease. Seven percent of pilot location respondents and 3% of the control site respondents gave this response. Risk Status Those at risk for kidney disease were more likely to mention symptoms related to urine. One- third of at-risk respondents (32%) said frequent urination and 9% said protein in the urine were symptoms of kidney disease. Those not at risk gave those responses less often, 23% for frequent urination and 5% for protein in urine. Patients with diabetes were less likely than others to regard general pain as a symptom but more likely to think that frequent urination would indicate kidney disease. More than one-third of respondents who do not have diabetes (35%) said that general pain would be a signal for kidney disease, compared to 16% of those with diabetes. More than four in 10 respondents who have diabetes (41%) cited frequent urination as a sign of kidney disease, while just one quarter of those not diagnosed with the ailment (25%) gave the same response. Patients with hypertension were more likely than others to mention frequent urination and protein in the urine as symptoms. One-third of respondents with hypertension (32%) identified frequent urination as a symptom of kidney disease, and 10% suggested that protein in the urine would let 12 All reported percentages are computed off the base of people (n=1294) who responded yes when asked whether there is something that would let a person know they had kidney disease. 35
  36. 36. them know they might have kidney disease. In contrast, 25% of those not diagnosed with hypertension listed frequent urination and 6% named protein in the urine. Nearly one-quarter of respondents with a family history of kidney failure (23%) said that swelling or edema were signs of kidney disease, compared to only half that percentage among those with no such family history (12%). Also, one-third of respondents with no history of kidney failure in their family (34%) said general pain was a symptom. Only one-quarter (24%) of respondents with a family history of kidney failure mentioned pain. Test Status Slightly more respondents who had been tested for CKD said that pain would be a sign of kidney disease compared to those who had not been tested (37% vs. 30%). Knowledge of CKD Definition Respondents able to accurately describe kidney disease were a little more likely than those who could not do so to think that this illness has some urine-related symptoms. More than four in 10 of those who defined kidney disease correctly mentioned difficulty urinating (41%) and protein in the urine (9%) as symptoms of the disease. In contrast, 36% of those who did not understand what kidney disease was also identified difficulty urinating and 4% named protein in the urine. 36
  37. 37. Perceived Causes of Kidney Disease Perceived Causes Q16: Do you happen to know what can cause kidney disease? Again, respondents lack some key information about the illness, as nearly one-half of the total sample was unable to name any causes of kidney disease (48%). As shown below, few respondents were able to identify true risk factors for the disease: only 16% named diabetes, 14% said hypertension or high blood pressure, and just 3% cited genetics/family risk as a cause. Although some of these causes of kidney disease were mentioned more frequently among groups with some association to the disease or one of the risk factors, the vast majority of all respondents did not have a solid understanding of the causes of kidney disease. The proportion of people who mentioned genetics or family risks was uniformly low. Perceived Causes of Kidney Disease (Percent) Diabetes/sugar diabetes/sugar 16 Hypertension/high blood pressure 14 Too little water/not drinking enough 14 Poor diet 9 Drinking soda or pop 8 Genetics/family risk/family member with 3 kidney failure Overweight/obesity 2 Too much water/drinking too much 2 Unspecific prescription medication 2 Other over-the-counter medicine 1 Lack of exercise 1 Specific prescription medication * Headache medicines: Tylenol/aspirin, etc. * Poor treatment/doctor’s fault * Other 11 Don’t know/Don’t remember 48 * Less than 0.5% Sub-group Differences Gender Women appeared more knowledgeable about diabetes as a cause of kidney disease; nearly one in five women (19%) identified diabetes as a cause of the disease, and just 10% of men gave the same response. Age Older respondents were more likely to make the connection between diabetes and hypertension than their younger counterparts. One in five respondents 55 years old and older (20%) named 37

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