An Interactive Education Program for Advanced CKD: The ABCs of Kidney Disease Program

An estimated 23% of patients with chronic kidney disease (CKD) have limited health literacy,1Fraser S.D. Roderick P.J. Casey M. Taal M.W. Yuen H.M. Nutbeam D. Prevalence and associations of limited health literacy in chronic kidney disease: a systematic review.Nephrol Dial Transplant. 2013; 28: 129-137Crossref PubMed Scopus (116) Google Scholar defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”2Mitchell A.E. Colvin H.M. Palmer Beasley R. Institute of Medicine recommendations for the prevention and control of hepatitis B and C.Hepatology. 2010; 51: 729-733Crossref PubMed Scopus (152) Google Scholar Limited health literacy in patients with CKD is associated with cardiovascular disease, fewer transplant referrals, and increased mortality.1Fraser S.D. Roderick P.J. Casey M. Taal M.W. Yuen H.M. Nutbeam D. Prevalence and associations of limited health literacy in chronic kidney disease: a systematic review.Nephrol Dial Transplant. 2013; 28: 129-137Crossref PubMed Scopus (116) Google Scholar,3Ricardo A.C. Yang W. Lora C.M. et al.Limited health literacy is associated with low glomerular filtration in the Chronic Renal Insufficiency Cohort (CRIC) study.Clin Nephrol. 2014; 81: 30-37Crossref PubMed Scopus (40) Google Scholar, 4Grubbs V. Gregorich S.E. Perez-Stable E.J. Hsu C.Y. Health literacy and access to kidney transplantation.Clin J Am Soc Nephrol. 2009; 4: 195-200Crossref PubMed Scopus (118) Google Scholar, 5Cavanaugh K.L. Wingard R.L. Hakim R.M. et al.Low health literacy associates with increased mortality in ESRD.J Am Soc Nephrol. 2010; 21: 1979-1985Crossref PubMed Scopus (170) Google Scholar CKD-specific patient knowledge is an important patient-centered outcome measure.6Wright J.A. Wallston K.A. Elasy T.A. Ikizler T.A. Cavanaugh K.L. Development and results of a kidney disease knowledge survey given to patients with CKD.Am J Kidney Dis. 2011; 57: 387-395Abstract Full Text Full Text PDF PubMed Scopus (116) Google Scholar Previous trials have demonstrated that improved patient knowledge is associated with positive clinical outcomes such as increased time to initiation of kidney replacement therapies.7Devins G.M. Mendelssohn D.C. Barré P.E. Binik Y.M. Predialysis psychoeducational intervention and coping styles influence time to dialysis in chronic kidney disease.Am J Kidney Dis. 2003; 42: 693-703Abstract Full Text Full Text PDF PubMed Scopus (138) Google Scholar Educational interventions may improve patient knowledge; however, there is sparse guidance for the optimal delivery and format of patient education programs. The Johns Hopkins Nephrology Patient Education Program, “The ABCs of Kidney Disease,” was designed with the aim of educating patients, families, and caregivers interested in CKD care in the Baltimore–Washington area. We hypothesized that participants would improve CKD-specific knowledge. The Johns Hopkins Medicine Institutional Review Board granted this project the exemption status and deemed it a quality improvement activity on February 27, 2017. “The ABCs of Kidney Disease” began in October 2015 as a monthly educational program to serve the patients of the Johns Hopkins Nephrology Clinic and surrounding communities. The topics covered in each session included normal kidney function, diagnosis of kidney disease, causes of CKD, complications of CKD management, and treatment of kidney failure, including conservative care, in-center and home dialysis modalities, and transplantation. Each session included a 1.5-hour lecture, followed by a question-and-answer period led by 2 attending nephrologists. The lectures were interactive and employed educational models and dialysis equipment. More details of the program’s content are presented in Items S1 and S2. Attendance was limited to 20 participants per session. Preceding each session, the participants filled out voluntary registration forms to obtain self-reported participant demographics and a pretest 28-question standardized kidney disease knowledge survey developed by Wright et al6Wright J.A. Wallston K.A. Elasy T.A. Ikizler T.A. Cavanaugh K.L. Development and results of a kidney disease knowledge survey given to patients with CKD.Am J Kidney Dis. 2011; 57: 387-395Abstract Full Text Full Text PDF PubMed Scopus (116) Google Scholar (Item S3). Following each session, the participants were asked to complete the kidney disease knowledge survey. Before 2019, the registration forms did not include information on sex, race or ethnicity, and education level; consequently, we collected this information via a chart review of the participants’ demographics and social history sections using electronic medical records. Demographics and patient scores were collected between October 2015 and February 2020 (Items S4 and S5). The primary outcome was a change in kidney disease knowledge. Kidney disease knowledge scores from the pre- and posttest surveys were compared using paired t tests. The secondary outcomes included assessment of the educational session using various Likert scales (from 1 to 5) (Item S6). The scores for Likert questions were averaged. From October 2015 to February 2020, 307 participants completed the registration forms (Table 1). The mean age of the participants was 63 years, 56% were women, 47% were African American, and 43% were White. Among the registered participants, 223 (73%) completed the pretest kidney disease knowledge survey and 165 (54%) completed the posttest kidney disease knowledge survey, with 144 completing both the pre- and posttest kidney disease knowledge surveys (47%). The average posttest score (76%) was significantly higher than the pretest score (62%) (P < 0.001) (Item S7). The classes were well rated (Table 2); the averaged scores ranged from 4.6 to 4.9 out of a possible maximum of 5.Table 1Participant CharacteristicsParticipants in The ABCs of Kidney DiseaseaParticipants between December 2015 to December 2018 who completed registration forms.N = 307Mean (standard deviation)Age (n = 291)63 (15.3) yMissing from total N: 16 (5.2%)n (%)Sex (n = 266)Female: 149 (56)Male: 117 (44)Missing from total N: 41 (13.4%)Race/ethnicity (n = 260)African American: 123 (47)American Indian or Alaskan Native: 3 (1)Asian or Pacific Islander: 13 (5)White: 112 (43)Hispanic: 4 (2)Other: 5 (2)Missing from total N: 47 (15.3%)Education (n = 91)Less than high school: 3 (3)High school: 19 (21)Some college: 21 (23)College: 27 (30)More than college: 21 (23)Missing from total N: 216 (70.4%)a Participants between December 2015 to December 2018 who completed registration forms. Open table in a new tab Table 2Averaged Ratings from Participant EvaluationsQuestionsRatingOn a scale of 1 (not well at all) to 5 (extremely well), how well was each topic explained?Normal kidney function (n = 254)4.8The causes and stages of chronic kidney disease (n = 257)4.8The effects of kidney disease on the body (n = 256)4.8Treatment options for kidney disease and failure (n = 255)4.8On a scale of 1 (strongly disagree) to 5 (strongly agree), evaluate the faculty and sessions.The session information will help me manage my kidney disease (n = 242)4.6The session met or exceeded my expectation (n = 253)4.7I can use the information I learned right away (n =255)4.6Overall, the speakers for the session were knowledgeable (n = 257)4.9Overall, the speakers for the session were engaging (n = 257)4.9The handouts and materials were useful (n = 254)4.8 Open table in a new tab In this educational intervention aimed at informing individuals with kidney disease and caregivers of key aspects pertaining to CKD management and kidney replacement therapies, we found that the kidney disease knowledge scores improved among the participants. Improving CKD knowledge and awareness has become a prominent issue, especially because previous research has suggested that lack of disease-specific knowledge among patients with CKD is not a reflection solely of late referral but of the delivery of nephrology care.8Finkelstein F.O. Story K. Firanek C. et al.Perceived knowledge among patients cared for by nephrologists about chronic kidney disease and end-stage renal disease therapies.Kidney Int. 2008; 74: 1178-1184Abstract Full Text Full Text PDF PubMed Scopus (158) Google Scholar Deficiencies in pre-end-stage kidney disease education, for example, are associated with underutilization of home dialysis modalities and likely contribute to delays in transplantation.9Mehrotra R. Marsh D. Vonesh E. Peters V. Nissenson A. Patient education and access of ESRD patients to renal replacement therapies beyond in-center hemodialysis.Kidney Int. 2005; 68: 378-390Abstract Full Text Full Text PDF PubMed Scopus (220) Google Scholar Our intervention has several strengths, including its comprehensive approach to teaching CKD care, small class sizes to facilitate interactive participation, and the use of a standard instrument to evaluate kidney disease knowledge. The limitations include missing demographic variables for several participants; however, based on available data, knowledge scores appeared to increase similarly across the subgroups (Item S7). Apart from education level, participant socioeconomic variables were not evaluated. The original kidney disease knowledge survey did not list home dialysis or conservative care as treatment options for end-stage kidney disease. We can modify future knowledge surveys, as others have done,10Tzeggai J. Jones K. Puri T. Saunders M. Improving CKD patient knowledge and patient-physician communication: a pilot study of a CKD report card.Kidney Med. 2020; 2: 369-372Abstract Full Text Full Text PDF PubMed Scopus (1) Google Scholar to include these additional treatment options. For several questions, the participants had a 50% chance of guessing the correct answer. Improvements in immediate CKD knowledge scores may have been affected by patient selection bias. Lastly, w

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