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Original Investigation

Development and Results of a Kidney Disease Knowledge
Survey Given to Patients With CKD
Julie A. Wright, MD, MPH,1 Kenneth A. Wallston, PhD,2 Tom A. Elasy, MD, MPH,3
T. Alp Ikizler, MD,1 and Kerri L. Cavanaugh, MD, MHS1,3
Background: Little is known about disease-specific knowledge in patients with chronic kidney disease
(CKD). We developed and examined the results of a survey to characterize kidney disease knowledge.
Design: Survey about kidney disease knowledge, with questions developed by experts.
Setting & Participants: 401 adult patients with CKD (stages 1-5) attending a nephrology clinic from
April-October 2009.
Outcomes & Measurements: We calculated survey reliability using the Kuder-Richardson-20 coefficient
and established construct validity by testing a priori hypotheses of associations between survey results and
patient characteristics. We descriptively analyzed survey responses and applied linear regression analyses to
evaluate associations with patient characteristics. Health literacy was measured using the Rapid Estimate of
Adult Literacy in Medicine.
Results: Participants’ median age was 58 (25th-75th percentile, 46-68) years, 83% were white, 18% had
limited literacy, and 77% had CKD stages 3-5. The 28-question knowledge survey had good reliability
(Kuder-Richardson-20 coefficient ⫽ 0.72), and mean knowledge score was 66% ⫾ 15% (SD). In support of the
construct validity of our knowledge survey, bivariate analysis shows that scores were associated with age (␤ ⫽
⫺0.01/10 years; 95% CI, ⫺0.02 to ⫺0.005; P ⫽ 0.003), formal education (␤ ⫽ 0.09; 95% CI, 0.03-0.15; P ⫽
0.004), health literacy (␤ ⫽ 0.06; 95% CI, 0.03-0.10; P ⫽ 0.001), kidney education class participation
(␤ ⫽ 0.05; 95% CI, 0.01-0.09; P ⫽ 0.009), knowing someone else with CKD (␤ ⫽ 0.05; 95% CI, 0.02-0.08; P ⫽
0.001), and awareness of one’s own CKD diagnosis (␤ ⫽ 0.07; 95% CI, 0.04-0.10; P ⬍ 0.001). Findings were
similar in adjusted analyses.
Limitations: Recruitment from 1 clinic limits generalizability of findings.
Conclusions: For patients with CKD, this Kidney Knowledge Survey (KiKS) is reliable and valid and
identifies areas of and risk factors for poor kidney knowledge. Further study is needed to determine the impact
of CKD knowledge on self-care behaviors and clinical outcomes.
Am J Kidney Dis. 57(3):387-395. © 2011 by the National Kidney Foundation, Inc.
INDEX WORDS: Chronic kidney disease; health literacy; patient knowledge; questionnaire; survey.

Editorial, p. 375

C

hronic kidney disease (CKD) affects millions of
people in the United States and is estimated to
increase in the future.1 CKD can lead to kidney failure
requiring renal replacement therapy and is associated
with morbidity and mortality at all stages.2 The health
and economic implications of this are enormous.3
Fortunately, there are therapies that decrease the complications of disease4-6 and may delay or even halt
progression to advanced stages.7,8
However, nearly all therapies aimed at preventing
kidney disease progression and decreasing associated
complications rely heavily on patient self-care, including recommendations for adherence to medication
regimens,9-11 avoidance of further nephrotoxic insults,12 and, in advanced stages, maintenance of strict
diet control.13 Research indicates that more patient
knowledge is associated with improved patient selfmanagement behaviors in patients receiving hemodialysis,14 improved glycemic control in patients with
diabetes,15,16 and increased medication adherence in
Am J Kidney Dis. 2011;57(3):387-395

patients with human immunodeficiency virus (HIV)
infection.17 Higher kidney disease–specific knowledge is associated with lower rates of peritonitis in
patients receiving peritoneal dialysis18 and less use of
catheters for vascular access in those receiving hemodialysis.19
In the general population, most people are unaware
that they have kidney disease,20 and perceived kidney
disease knowledge is low even in patients with CKD
under the care of a nephrologist.21 In a study of 676
From the 1Division of Nephrology and Hypertension, Department of Medicine; 2School of Nursing; and 3Vanderbilt Eskind
Diabetes Center, Diabetes Research and Training Center, Vanderbilt University Medical Center, Nashville, TN.
Received May 18, 2010. Accepted in revised form September 13,
2010. Originally published online December 20, 2010.
Address correspondence to Kerri L. Cavanaugh, MD, MHS,
Vanderbilt University Medical Center, Division of Nephrology,
Department of Medicine, 1161 21st Ave S, Medical Center
North S-3223, Nashville, TN 37232. E-mail: kerri.cavanaugh@
vanderbilt.edu
© 2011 by the National Kidney Foundation, Inc.
0272-6386/$36.00
doi:10.1053/j.ajkd.2010.09.018
387

we established evidence of construct validity by defining an a priori model of patient characteristics that we hypothesized to be associated with kidney disease knowledge (Fig 1). Survey Psychometric Analyses We performed factor analysis to determine whether there were underlying subscales within our survey and assist in decreasing the number of questions. In the survey item with 2 correct responses (asking the participant to identify 2 potential treatments for kidney failure). also were removed. items were reviewed for face and content validity and redundancy and ultimately decreased to 34 kidney knowledge questions. and psychometric analysis.19.43.22-25. research personnel (n ⫽ 6).21.38-42 and convened experts in various areas of kidney disease care.30. There is no universal gold standard for measuring patient kidney knowledge to compare correlations with our new survey. We conducted a content review of kidney knowledge questionnaires. we solicited method input from experts (n ⫽ 3) in health literacy. A priori. Am J Kidney Dis.22-26 and lack of effective provider communication is seen as a barrier to receiving and understanding this information. HIV infection17 and diabetes. medications of potential benefit or harm to the kidney.45 Study Design The study design was cross sectional. treatment options for 388 Figure 1.32-37 reviewed patient perspectives of diseasespecific information needs. this would support the construct validity of our new instrument. scale validation.14.Wright et al patients with CKD stages 3-5. kidney failure. Next. When able. and health outcomes.19. In addition. the item was considered correct only if both treatments were checked. We eliminated any item that received ⱖ95% correct responses. implying they were not associated in the same direction with other survey questions or the underlying construct of patient knowledge. and a kidney disease educator (n ⫽ 1).44 If our knowledge scores were associated similarly with patient characteristics. Assessment of patient disease-specific knowledge is clinically relevant in that it may reveal topics difficult for patients to understand and aid in the development of educational interventions that specifically target areas of low knowledge. system/provider factors. Approximately 100 questions were generated first to maximize content relevant to kidney knowledge. not all have been validated in populations that include patients with CKD stages 1-5. and other topics important to preserving kidney function. The first ⬃20 study participants were asked to comment on clarity and content.31 However. a measure of internal reliability for surveys with dichotomous responses. These items with low difficulty would not contribute to discrimination between different levels of patient knowledge. nurses (n ⫽ 3). and they do not focus on areas specific to optimizing self-care in early CKD to prevent disease progression.43 Items with negative item-rest correlations. we were informed by associations observed in knowledge scales in other chronic diseases. with administration of the survey to patients after they were seen in Nephrology clinic.14. In METHODS Survey Validation Process Survey Development We developed a survey to assess kidney disease knowledge in a stepwise fashion. Therefore.32-36 However. Survey score was defined as the sum of correct responses to each survey question divided by total number of questions. descriptive research repeatedly shows that patients want and need more disease-specific knowledge to support self-care behaviors. we developed survey questions to represent knowledge about topics important to kidney disease management.21 This is striking considering that patients in this cohort on average had been seeing a nephrologist for more than 4 years. The aim of this study was to develop a valid and reliable survey to measure kidney disease–specific knowledge in patients with CKD not yet requiring renal replacement therapy and use it to describe areas of and patient characteristics associated with low knowledge. the Kuder-Richardson-20 coefficient was used to determine internal consistency.15. including nephrologists (n ⫽ 3).27 Although educational interventions have delayed the initiation of dialysis therapy and decreased the risk of death.57(3):387-395 .29 Conceptual models have been developed to describe the relationship between individual capacity. for example. These content areas included functions of the kidney. and nearly half reported they had no knowledge about treatment options if their kidneys failed.43 All survey items except one had only 1 correct response. We hypothesized that disease-specific knowledge in patients with established CKD would be limited.28 it is notable that a recent review of randomized trials of educational interventions in patients with kidney disease showed that no studies were performed in patients with early CKD. a total of 35% of patients reported knowing little or nothing about their own CKD diagnosis. signs and symptoms of disease progression. These were field tested in a small group of clinical and nonclinical personnel for clarity. Model of hypothesized associations with knowledge about chronic kidney disease (CKD). and patient knowledge often is noted as an important and necessary component of these relationships. dieticians (n ⫽ 2). and there were no additional suggestions. blood pressure targets. Questionnaires have been developed to measure some aspects of knowledge in patients with or at risk of CKD. Using an iterative process.18. In addition. 2011. little is known about actual knowledge in patients with all stages of CKD on topics relevant to optimizing and preserving kidney function.

46-68) years. For all statistical analyses. 58% had seen a nephrologist at least 3 times in the past year.” when asked “Do you have chronic kidney disease?”. disease diagnosis and number of visits in the past year). and awareness of kidney disease. Patients with a pre-existing cognitive or vision impairment (prohibiting the ability to see the materials) also were excluded. “Do you have chronic kidney disease?” Statistical Analysis Descriptive statistics were calculated as median and 25th-75th percentile for continuous variables or frequency and percentage for categorical variables. visit information (eg. participants had a median age of 58 (25th75th percentile. 2011. CKD stage was determined using laboratory serum creatinine and urinary protein values abstracted from the medical record. The 28-question Kidney Knowledge Survey (KiKS. and overall. not wanting to finish (n ⫽ 1). we asked patients if they had a “kidney problem” and also asked. Topics for which ⬍50% of the cohort answered correctly included the relationship of proteinuria to poor kidney function (19%). giving us a sample size enrollment goal of 340 participants. and attendance in a kidney education session. factor analysis showed no clear knowledge subscales. Patients were offered monetary compensation for participation. and the Kuder-Richardson-20 reliability coefficient was 0. Most had an education level of high school graduate or higher (94%). are listed in Table 1. If participants scored less than a sixth-grade reading level using the REALM. Overall.4). item-rest correlations. Knowledge Survey Results Factor analysis was performed. com). these loadings were modest. Two additional questions targeted awareness of CKD diagnosis.Kidney Disease Knowledge Survey calculating an adequate sample size for survey validation.05 are considered statistically significant. and had CKD as defined by the National Kidney Foundation’s Kidney Disease Outcomes Quality Initiative (KDOQI) guidelines. The KiKS had a mean score of 0. Forty-eight percent reported a household income greater than $55. a validated measure of pronunciation ability that correlates well with reading comprehension. Descriptively.66 ⫾ 0. The study population was composed of eligible patients enrolled during a visit to the nephrology clinic.000 per year. 0.15 (range. yet 18% had limited health literacy (⬍9th grade reading level). the knowledge survey was administered orally so that low reading comprehension would not be a barrier to its completion. There were 5 items that ⱖ95% of participants answered correctly. were English speaking. Although there seemed to be similar loadings for items onto one factor related to kidney function and symptoms (factor loadings ⱖ0. The survey took an average of 25 minutes to complete. Additional variables collected included self-reported race. highest level of educational attainment. and 83% were white (Table 1). Am J Kidney Dis. We report ␤ coefficients for both unadjusted and adjusted analyses. and laboratory values from the medical record.96). and diagnostic testing was performed to evaluate model assumptions. and 17% reported attending a kidney education session. as appropriate. and these were removed. 5-10 participants generally are recommended for each question. Eligible patients were at least 18 years of age. available as online supplementary material) was analyzed for internal consistency. Seventy-seven percent had CKD stages 3-5. We performed all statistical analyses using STATA. The most common reason for not participating was insufficient time. The 4-variable Modification of Diet in Renal Disease (MDRD) Study equation was applied to calculate estimated glomerular filtration rate (GFR). we looked at each survey question to determine topic areas for which patient knowledge may be low (Table 2).46 All had seen a nephrologist in the Vanderbilt Nephrology Clinic at least once before enrollment. Five participants withdrew because of illness (n ⫽ 2). stratified into 3 categories by CKD stage. One remaining item had negative correlations with the rest and also was removed. findings with P ⱕ 0. we used Kruskal-Wallis test and Pearson ␹2 or Fisher exact test for continuous or categorical variables by CKD stage.” Participant characteristics. Bivariate associations with overall knowledge scores were calculated using simple linear regression for patient characteristics. Literacy was assessed using the Rapid Estimate of Adult Literacy in Medicine (REALM). Although 94% of participants were aware they had a “kidney problem. sex. The Institutional Review Board from Vanderbilt University Medical Center approved the study.57(3):387-395 RESULTS Participant Characteristics Four hundred six consecutive consenting patients were recruited from a nephrology specialty clinic (67% response rate). more frequent visits to a nephrologist. Adult patients with CKD (stages 1-5) were enrolled from April 2009 to October 2009. role of the 389 . as defined in our a priori model.0 (Stata Corp. www. hypertension. proportion of correct responses. More advanced kidney disease was associated significantly with older age. and race. leaving 401 participants.46 To examine differences in participant baseline characteristics. The final sample size was inflated for a dropout rate of 10%-15% to account for potential study withdrawals. only 69% responded “yes. and written consent was obtained from all participants.43 We estimated 10 participants for 34 knowledge questions. 53% were men.47 The survey was written at a sixth grade reading level. The adjusted model used ordinary least-squares regression and retained variables with significant associations in bivariate analyses. We excluded patients who had a kidney transplant or currently were receiving dialysis because it was believed that their diseasespecific knowledge may include topics outside the scope of general CKD knowledge. and time (n ⫽ 2).48 and patients were assigned a CKD stage according to KDOQI guidelines. diabetes. income. participation in a kidney education class.11-0. We abstracted patient age. and the results in Table 2 show the initial 34 knowledge item topics. We do not have information about nonparticipants. version 10.stata. and additional exploratory analyses were performed for age. and factor loading onto the first factor. Item S1.72.

P ⫽ 0. participation in a kidney education class. and awareness of CKD diagnosis.04. 68) 213 (53) 40 (30.001.04-0.08.01/10 years.001 0. 0.05.001). we have created an instrument that is valid and reliable in measuring disease-specific knowledge in patients with CKD. knowing someone with CKD (␤ ⫽ 0.06. administration. 0. The reliability calculated for our knowledge survey is similar to other knowledge scales in similar populations (hemodialysis)14.04).005.03-0. P ⫽ 0. 95% CI.009 0.09.10. health literacy (␤ ⫽ 0.05. development. previous 390 attendance in a kidney education class (␤ ⫽ 0.01). 81% of patients did not fully understand that urinary protein is not only a Am J Kidney Dis. A subgroup analysis for participants with estimated GFR ⬍60 mL/min/1. higher health literacy (␤ ⫽ 0. blood pressure. understanding that there are stages of CKD (93%). 0.3 0. P ⫽ 0. 95% CI.8 0.05. P ⫽ 0. 95% CI. knowing someone else with CKD (␤ ⫽ 0. 55) 46 (50) 62 (52. DISCUSSION Using a systematic method of survey design.001) remained independently associated with higher KiKS score. although decreasing proteinuria is one of our mainstays of therapy.01-0.002. and analysis. 0. P ⫽ 0.02 to ⫺0.09.003).09.000 ⬎$55.001 0. 95% CI.01-0. 95% CI. specifically.09. 0. P ⫽ 0.02-0. In bivariate analyses. CKD stage. education (␤ ⫽ 0. ⫺0. and knowledge about some of the symptoms of progressing kidney disease.001 ⬍0.01/10 years. Table 3).07.44 KiKS performed as expected with our a priori model and showed bivariate associations similar to those found in knowledge scales for other diseases. In addition.001 0. 28% of patients did not identify this as a medication to avoid.03-0.1 0.44 We identified many topic areas important to patient self-care that are not well understood by patients with kidney disease.57(3):387-395 . 0.07.04).2 ⬍0. 75th percentile) or number (percentage). 95% CI. health literacy level. a lack of understanding that there may not be symptoms (22%). 69) 105 (54) 62 (54. however. Abbreviations: BP.02 to ⫺0. Knowledge scores were not associated with race or sex in this cohort.000 $25.001 0. CKD. chronic kidney disease.15. 95% CI. Multivariable analysis included age.19 and patients with other chronic diseases.002-0. KiKS score was associated with age (␤ ⫽ ⫺0.009-0. younger age (␤ ⫽ ⫺0. kidney education class participation (␤ ⫽ 0.73 m2 (n ⫽ 309) showed similar results.05.Wright et al Table 1.04. 0.000 375 (94) 330 (82) 89 (97) 82 (89) 182 (93) 157 (81) 104 (91) 91 (80) 71 (19) 128 (34) 181 (48) 16 (18) 28 (31) 46 (51) 27 (15) 68 (37) 88 (48) 28 (26) 32 (30) 47 (44) Self-reported kidney education class ⱖ3 Nephologist visits in past year Know someone with CKD Aware of “kidney problem” Aware of CKD diagnosis Self-reported diabetes (n ⫽ 380) Self-reported high BP (n ⫽ 394) 67 (17) 232 (58) 198 (50) 375 (94) 278 (69) 145 (38) 338 (86) 0 (0) 41 (45) 41 (45) 83 (90) 50 (54) 18 (21) 71 (78) 19 (10) 103 (53) 94 (49) 181 (93) 130 (67) 76 (42) 162 (85) 48 (42) 88 (77) 63 (56) 111 (97) 98 (86) 51 (46) 105 (93) Participant Characteristic 4-5 (n ⴝ 114) P ⬍0. ⫺0.15. and awareness of CKD diagnosis (␤ ⫽ 0.3 0. Similar to bivariate analyses. We often counsel patients to avoid nonsteroidal anti-inflammatory medications because use may promote kidney dysfunction49-51. P ⬍ 0.009). 95% CI. P ⫽ 0. providing evidence supporting its validity. P ⫽ 0. 0. 95% confidence interval [CI].02-0.10.01 Note: Values are expressed as median (25th.09. P ⫽ 0. Topics for which ⬎90% of the cohort answered correctly included knowledge of blood pressure goal (91%). P ⫽ 0. and awareness of their own CKD diagnosis (␤ ⫽ 0. 0. 95% CI. knowing someone with CKD. kidney in glucose control (40%).08 ⬍0.02). 2011. education.001). and recognizing fatigue as a sign of advanced kidney disease (93%). 95% CI.14. Participant Characteristics Stratified by CKD Stage CKD Stage All Participants (N ⴝ 401) 1-2 (n ⴝ 92) 3 (n ⴝ 195) Age (y) Men Race White Nonwhite 58 (46.004). 71) 62 (54) 333 (83) 68 (17) 69 (75) 23 (25) 173 (89) 22 (11) 91 (80) 23 (20) Formal educational attainment ⱖhigh school graduate Health literacy level ⱖ9th grade reading level Annual household income ⱕ$25.001-$55.

Am J Kidney Dis.38 22 41 48 53 57 59 59 62 63 69 93 0.23 0.21 0.07 0.44 ⫺0.26 0. but uncontrolled.22.22 0.20 and we found that even in a nephrology specialty clinic.34 0.09 0.08 96 ⫺0.35 0.42 0.64 Awareness of CKD diagnosis is low in the general population.13 40 49 68 68 71 78 78 0.05 66 0. we found there appears to be limited knowledge regarding basic information about the kidney.11 99 0.37 0.44 83 88 0.46 0.54 It is used by many health care centers55-57 and is recommended for use by providers when explaining kidney test results to patients.49 0. glomerular filtration rate. KiKS Individual Question Topics and Psychometric Testing Results Topic General knowledge: Reasons that protein in urine is a problem Understanding increased risk of heart disease Definition of GFR Medications a person with CKD should avoid Treatment options for kidney failure Understanding increased risk of mortality Medications important to kidney health Blood pressure goal Knowing there are stages of CKD Understanding CKD is a condition that does not go away How kidney function is checked Understanding that high BP can hurt the kidneys Understanding that diabetes can hurt the kidneys No. and only 22% of participants correctly responded that as CKD progresses. Patient knowledge of symptoms also was limited.43 0.17 0. including information about appropriate use of medications. It is possible that if participants selected any of the symptoms in our survey.57(3):387-395 marker of damage.06 0. as with other chronic diseases.04 0. KiKS scores were lower than expected given that patients were established within the nephrology clinic and most had moderate to severe CKD.42 0.53 In addition.03 ⫺0. patients understanding that they have “chronic kidney disease” cannot be assumed.19 0. there may not be symptoms. may contribute to further disease progression.38 0.43 68 72 0.20 0.50 0.13 0.46 0.29 0. more 391 . CKD may be progressing to advanced stages of disease.30 0.25 0.50 ⫺0. People at risk of CKD believe that knowledge about symptoms is one of the most important concepts for patients to understand. An estimate of GFR is one of the recommended methods for CKD testing and is considered one of the best overall measures of kidney function.25 0. blood pressure.08 0. 2011.17 78 0. chronic kidney disease.05 0.12 98 0. including anatomy. patients did not seem to understand some of the kidney’s actions because more than one third of our participants did not know that the kidney makes urine.13 0.01 0.15 91 93 0.35 84 0.33 ⫺0. ⬎30% of our study population did not understand the term GFR. However. KiKS. GFR.19 95 0.27 Further emphasis that symptoms may not manifest until disease is well advanced may provide additional information that our patients need to motivate regular follow-up and testing.02 0. of kidneys a person normally has Knowledge of kidney functions: Role in glucose control Role in bone health Role in BP control Urine production Role in anemia Role in hair loss Role in phosphorus control Role in potassium control Role in waste clearance (“cleaning blood”) Knowledge of symptoms of progression or failure: No symptoms Unusual itching Confusion Metallic/bad taste Shortness of breath Difficulty sleeping Blindness Nausea/vomiting Weight loss Hair loss Increased fatigue Item Difficulty (% correct) Item-Rest Correlation Factor Loading 19 0.13 0.11 0.37 ⫺0. and guidance in understanding the meaning and interpretation of tests used to monitor potential disease progression.34 0. For example.43 ⫺0.01 0.49 0.52 Studies suggest that patients want to know more about what can be done to protect existing kidney function. lack of understanding of common vocabulary may contribute to patient confusion and frustration.11 0.09 0.Kidney Disease Knowledge Survey Table 2.39 In addition.22 0.17 74 0. Lack of understanding regarding fundamentals of major organs.18 0.37 0. rather than reliance on “how one feels” when seeking kidney care.37 0.34 Abbreviations: BP.25 0.61-63 and addressing low literacy using clear communication principles may be beneficial.10 97 0. Low knowledge and health literacy were associated significantly. kidney knowledge survey. this also highlights a potential gap in patient understanding: even without symptoms. CKD.17 0.58 Although patients59 and providers60 express the desire for additional resources to support patient education in kidney disease. has been noted previously in patients with chronic disease.32 0. they may have believed the response “no symptoms” was incorrect. When asked “Do you have chronic kidney disease?”.41 0.

Associations Between Kidney Knowledge Score and Patient Characteristics Patient Characteristic Unadjusted Model ␤ Coefficient (95% CI) P Age (/10 y) Sex (male vs female) Race (nonwhite vs white) Annual household income $25. when educational interventions are provided to patients near renal replacement therapy. In one qualitative study exploring selfmanagement experiences of people with CKD (stages 1-3).05 to 0. and awareness of CKD diagnosis.68 and adherence to optimal CKD treatment guidelines69 and recognition of CKD diagnosis70.13.02) 0. It also is possible that providers may choose not to disclose some information to patients or that patients are in denial regarding their diagnosis.004 0.03 to 0.002) ⫺0.07 to 0.03 (⫺0.04 (⫺0. confidence interval. established.06 to 0.57(3):387-395 .05 (0.71 are lower than for those seen by kidney specialists.001-$55. Thus. and treated under the care of a nephrologist.25 These perspectives highlight the complexity that providers face in assessing and determining a patient’s readiness to accept and process information about his or her diagnosis. CKD stage.04) 0. or mistrust in information from their provider.05) 0.09) 0. and 392 resources limited our ability to approach all potentially eligible patients.19 There are important implications of our research.11) 0. However. patient diseaseAm J Kidney Dis. of visits in past year (ⱖ3 vs ⱕ2) Know someone with CKD (yes vs no) Aware of CKD diagnosis (vs not aware ) Adjusted Modela ␤ Coefficient (95% CI) ⫺0.002 to 0.01 (⫺0.04 to 0. we do not have measures in our nonparticipants for comparison.09) 0. R2 for the adjusted model ⫽ 0.” using instead terms like “life-long” and “forever.02 to 0. chronic kidney disease.04 to 0. Second. CKD.05 (0. kidney education class.001 0.01 (⫺0.000 vs ⱕ$25. high school. participants admitted that they knew they had a “kidney problem.06) 0.02 (⫺0.01 0.06 (0.001 Formal education (HS graduate vs non HS graduate) Health literacy level (ⱖ9th grade vs ⬍9th grade) Kidney education class (attended vs not attended) No.2 CKD stage 3 vs 1-2 4-5 vs 1-2 ⫺0.02 to ⫺0.01 to 0.04 to 0.004 (⫺0.02 0.01 (⫺0.15) 0. other patients felt uninformed that their condition was “chronic” and considered this inappropriate “withholding” of information on the part of the provider.07) 0. We have yet to fully determine the clinical significance of observed differences in KiKS scores and the potential impact on outcomes in patients with kidney disease. However.02) ⫺0.04 (0. health literacy level. 2011.4 0.01 to 0.003 (⫺0.2 0. attributed in part to increased patient knowledge. this is a cross-sectional study and causality thus cannot be inferred.04 (0.07) 0.Wright et al Table 3.10) 0.000 vs ⱕ$25.9 0. Our survey measured knowledge in participants with a CKD diagnosis that was recognized.005) ⫺0.”25 However.02 (⫺0.001 Abbreviations: CI.67 and even modest differences observed with a dialysis knowledge survey (3% difference) were associated with an important clinical outcome. did not “really even want to know.”25 Patients discussed a struggle with uncertainty about the permanence of kidney disease and exhibited avoidance of the term “chronic.08) 0.001 ⬍0. Although many mechanisms underlying poor awareness of CKD are unknown.04 0.04) P 0.04 0.” suggesting lack of understanding of how to interpret their own kidney testing evaluation or the information discussed by their provider.02 to 0.07 (0.05 (0.09 (0. but were not able to capture a measure of duration in this sample.02 to ⫺0. We suspect that duration of kidney specialist care may be an important factor in these potential associations. this population was a convenience sample enrolled from a single nephrology clinic.000 ⬎$55.009 to 0.2 0. improving awareness of kidney disease is a newly identified priority of Healthy People 2020.004) 0. KiKS score was not associated consistently with CKD stage or number of visits to the provider in the past year.01 (⫺0.09) 0.9 0. we see a benefit of increases in time to dialysis therapy initiation.5 0.03 to 0.009 0.08 to ⫺0. studies indicate that most patients with early stages of CKD are seen by primary care providers. HS.65 uncertainty or fear of treatments.4 ⫺0. a Adjusted linear regression analysis includes age. Patients more comfortable with their level of knowledge and educational background in general may have been more willing to take our knowledge survey.009 to 0.01 to 0.05 (0.” but did not know “how big (of) a problem. knowing someone with CKD.05 (⫺0.10) 0.02 to 0.09) 0. First. our results are not generalizable to the entire CKD population. Thus. Third.003 0.03 (⫺0.01 to 0.03 0.” and in some cases.1 0.66 There are several limitations to this study. however. than one third of participants answered “no. formal education. This may be related to low perceived susceptibility to kidney disease.000 ⫺0.03) 0.

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