http://www.kidney-international.

org meeting report

& 2013 International Society of Nephrology

An education and counseling program for chronic

kidney disease: strategies to improve patient
knowledge
Romina A. Danguilan1, Concesa B. Cabanayan-Casasola1, Nemma N. Evangelista1,
Ma Lourdes F. Pelobello1, Clarissa D. Equipado1, Ma Lorelei Lucio-Tong1 and Enrique T. Ona2
1
Department of Adult Nephrology, National Kidney and Transplant Institute, Quezon City, Philippines and 2Department of Organ
Transplantation, National Kidney and Transplant Institute, Quezon City, Philippines

Pre-dialysis education programs assist patients in INTRODUCTION

understanding their disease and treatment that may improve End-stage renal disease (ESRD) globally represents a signi-
outcomes. We review the efficacy of our education and ficant public health burden with annual dialysis growth rates
counseling program in improving chronic kidney disease of B6–8% per annum.1 However, there is limited infor-
(CKD) knowledge. Incident CKD patients not yet on renal mation on the incidence, prevalence, and costs of chronic
replacement therapy (RRT) from June 2009 to February 2010 kidney disease (CKD) in the Philippines. The National
answered questionnaires developed to determine health- Nutrition and Health Survey covering the years 2003–2004
seeking behavior, perceived, and actual CKD knowledge. reported that among 4753 adults, the prevalence of CKD
An evaluation tool was administered before and after the Stages 3–5 was 2.6% based on the modification of diet in
education modules to determine its efficacy in improving renal disease formula.2 The population of Filipinos aged X20
CKD knowledge. Among 299 CKD patients, 60% were males, years in 2005 was 46,627,172. Hence, about 1.2 million adult
mean age was 49 years, and 37% were high-school Filipinos have CKD based on the results of this survey.
graduates. Primary renal disease was chronic The clinically valid approaches for detecting, preventing,
glomerulonephritis in 30%, 60% belonged to CKD stage 5, and slowing the progression to ESRD, consisting of early
32.8% had no knowledge about CKD, and 43% were unaware referral and patient education, are widely available but
of its severity and RRT options. CKD stage was not sparsely used in practice.3,4 Several studies showed that
significantly associated with patients’ perceived CKD patient education can retard the progression of renal disease
knowledge and RRT options. Only 28% completed the and improve survival on dialysis therapy,5 enhance illness-
modules within the 6-month follow-up period. There was related knowledge,6 and promote quality of life.7
a significant increase in mean scores from 7.0±5.11 to Health-care-seeking behavior refers to the active seeking
23.0±4.5 points (Po0.00001). Patients o50 years old had of ways to alter personal health habits and/or the environ-
significantly higher scores (P ¼ 0.007). In a financially ment in order to move toward a higher level of health.8,9 It is
disadvantaged CKD population, the majority present already apparent that people differ in their willingness to seek help
in CKD Stage 5. Our CKD education and counseling program from health-care services. This aspect of patient behavior can
was effective in improving patients’ knowledge of their affect the health outcome, and at present, the health-care-
disease. Reasons for the non-completion of the CKD seeking behavior of Filipino patients with CKD has not been
education modules sessions need to be addressed to allow well characterized.
more patients to benefit from the information provided. In countries with minimal national health insurance such
Kidney International Supplements (2013) 3, 215–218; doi:10.1038/kisup.2013.17 as the Philippines, CKD education should be an integral part
KEYWORDS: education modules; financially disadvantaged; health-seeking of patient management and may delay disease progression by
behavior; pre-dialysis education program making patients more compliant with their therapy. Our
hospital started a pre-dialysis education (PDE) program in 2006
directed at financially disadvantaged CKD patients with the
goals of improving CKD knowledge and preparing patients for
dialysis and kidney transplantation. We describe the patients’
health-care-seeking behavior before consultation at our hospital,
determine the patients’ perceived knowledge of CKD and renal
Correspondence: Romina A. Danguilan, Department of Adult Nephrology,
replacement therapy (RRT), and compare this with their actual
National Kidney and Transplant Institute, East Avenue, Quezon City 1100, knowledge. We review the efficacy of our education and
Phillipines. E-mail: [email protected] counseling program in improving CKD knowledge.

Kidney International Supplements (2013) 3, 215–218 215

meeting report RA Danguilan et al.: Education and counseling program for CKD

MATERIALS AND METHODS modules discussed. Wrong answers to the post-test were corrected
Structured education modules and explained during the discussion. The over-all post-test was
All new patients belonging to the financially subsidized population administered after the patient completed all the modules.
(partially subsidized up to 80% of the total cost of treatment) seen at
the Out-Patient Department (OPD) of the National Kidney and Measuring the efficacy of the education program
Transplant Institute (NKTI), a tertiary semi-government renal Scores on the overall pre- and post-test evaluation tools were
referral center, and diagnosed with CKD were referred to the CKD analyzed. The target was for patients to obtain at least 75% correct
Clinic for education and counseling. In this Clinic, the trained CKD answers per tool in order to conclude that the educational modules
educators, a nurse and a psychologist, explained the background and were effective. The overall pre- and post-test scores were compared
goals of the PDE, and patients’ consent to participate was obtained. to determine if there was improvement in the patient’s CKD
The CKD educators conducted the following structured educa- knowledge.
tional modules according to the patient’s CKD stage: Factors such as age, sex, educational attainment, and CKD stage
For CKD stages 1–3: were correlated with baseline knowledge and the knowledge
K Visit 1—modules 1–5 on renal anatomy and function, types of acquired after the modules.
kidney failure, CKD etiology, and stages, signs and symptoms,
nutrition, and medications prescribed to CKD patients. Statistical analysis
K Visit 2—modules 6–8 on laboratory tests in CKD, metabolic Frequency and percent distributions were presented for
effects of CKD such as anemia, bone disease, and other categorical variables, while summary statistics such as mean,
complications, preservation of kidney function. standard deviation, and range were computed for continuous
K Visit 3—modules 9–13 on RRT options and treatment cost.
variables. Chi-square was used to determine the association
of perceived knowledge and demographic variables. Paired
For CKD stages 4 and 5:
t-test was used to compare mean pre- and post-test scores on
K Visit 1—modules 1–5 and 9–13. These were discussed simulta-
the 30-item questionnaire and chi-square for factors
neously to give the patients time to make an informed decision
about the treatment options for their illness, since at this late associated with these scores.
stage the requirement for RRT was imminent.
K Visit 2—modules 6–8. RESULTS
Among 299 CKD patients enrolled in the study, 60% were
After each module patients were instructed to return after every males with a mean age of 49 years. The majority (70%) had a
out-patient follow-up for completion of the education modules and high-school education, 23% had attended college, and 2%
further counseling. Patients were given take-home educational had been to graduate school. 59% were married, and 38%
materials after each visit and were instructed about the recom- had an average monthly income of oUS$114. The primary
mended completion times for the modules: within 3–4 months for renal disease was chronic glomerulonephritis in 30%,
CKD stages 1–3, within 1–2 months for CKD stage 4, and within
diabetic nephropathy in 29%, and hypertension in 24%.
1 month for CKD stage 5, in order to improve the retention of the
On initial presentation, most of the CKD patients seen in our
information provided for this group.
Institute were already in the late stages of CKD: 60% CKD
Stage 5 and 19% Stage 4. Only a few were from earlier stages:
Evaluation tools
Evaluation tools consisted of four self-administered questionnaires:
10% Stage 3, 1% Stage 2, and 2% Stage 1.
a 30-item tool: 22 items on general CKD knowledge and 8 items on
RRT; three 10-item tools covering lessons learned from each of the Health-care-seeking behavior
three CKD Clinic visits; an 8-item tool on patients’ health-care- The majority (91%) had previously consulted a physician.
seeking behavior prior to consultation at our hospital; and a 4-item In 97%, physicians informed them about their kidney disease,
questionnaire on perceived CKD knowledge. but only 44% knew its cause. Kidney disease was thought to
Perceived knowledge, defined as how the patient rates himself on be due to eating salty foods (35%), diabetes (19.8%), and
his knowledge about kidney disease and its treatment, was tested hypertension (13%). Family, friends, and relatives were
using a questionnaire modified from that of Finkelstein et al.12 sources of information about their disease in 39.8%,
The 30-item tool evaluated patients’ baseline or actual followed by television in 14.4%. When asked about the
knowledge (overall pre-test) and again after the patient seriousness of their disease, 43.1% did not know, 27.8% said
completed all the education modules (overall post-test). The
moderately serious, 17.7% not serious, and 9% extremely
10-item tools were administered after each visit to reinforce the
lessons learned.
serious.

Perceived CKD knowledge

Education and counseling program
The overall pre-test, health-care-seeking behavior, and perceived
The majority (34%) had no knowledge about CKD, 30% had
knowledge tools were administered at the NKTI-OPD before the little, 28% some, and 8% claimed a great deal of knowledge.
patients were referred to the CKD Clinic. Most were unaware of RRT options; 70%, 64.2%, and 54.2%
At the CKD clinic, the education modules were initiated through had no knowledge of peritoneal dialysis, hemodialysis, and
structured individualized lectures and discussions. A 10-item post- transplantation, respectively. There was no significant asso-
test was administered to determine the patients’ understanding of the ciation between CKD stage and knowledge of RRT.

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RA Danguilan et al.: Education and counseling program for CKD meeting report

Actual CKD knowledge majority of the patients had been able to attain a high-school
Ninety percent scored o60% on general knowledge of CKD, education. Hence, the challenge for nephrologists is to better
while the same number scored o50% on the actual know- understand the factors that limit patient communication, so
ledge of ESRD treatment options. Among patients who that patients’ knowledge and understanding of their kidney
claimed that they had extensive CKD knowledge, all scored disease may be improved.
o60% in the actual knowledge questionnaire. The majority were not aware of the seriousness of their
disease despite most of them requiring RRT. Adequate CKD
Efficacy of the education modules education should be an integral part of patient management.
Only 83 out of 299 patients (28%) completed the modules Boulware et al11 found that many high-risk patients have a
within the 6-month follow-up period. Completion of low perceived risk to CKD. Thus, interventions targeting
modules was delayed for X30 days in all patients. patient perceptions of CKD risk and other attitudes
Of the 215 patients (72%) who did not complete the pro- associated with these perceptions could have an impact on
gram, 83% no longer presented for follow-up after 3 months, adherence to therapies and health outcomes.
either in the OPD or in the CKD Clinic. Poor compliance Among the options for RRT, a significant percentage of
with follow-up was due to either financial constraints, or patients had a deficient understanding of PD, a finding
(a) patients coming to the Institute only for a definitive renal similar to that of Finkelstein et al, who reported that PD is
disease diagnosis; (b) patients were so ill that they could not either not presented or presented to patients in a manner that
return for follow-up; (c) lack of understanding of the effects was not easily understood by them.
of kidney disease; or (d) low priority given to maintaining Most of the CKD patients seen in our Institute were
good health. already in the late stages of CKD. Thus, there had been
There was a significant increase in mean overall pre-test delayed referral to the nephrologist and delayed initiation of
scores of CKD knowledge from 7.0±5.11 (maximum score treatment to retard the progression of renal disease and to
30) to 23.0±4.5 (maximum score 30) points in the overall prepare patients for RRT. In a meta-analysis of CKD patients
post-test, with 69% (57 out of 83 patients) scoring X75% referred late (o3 months before initiation of RRT) to
(Po0.00001). nephrologists, there was a significantly increased overall
There was an increase in the number of patients (58%) mortality and duration of hospital stay by an average of
who gained knowledge on the different aspects of CKD after 12 days in the late referral group.12
completing the educational modules except for the topic on The topics included in the education and counseling pro-
signs and symptoms of CKD. gram had the purpose of increasing patient awareness about
Patients aged o50 years had significantly higher pre- and their condition and its outcome so that lifestyle modification
post-test results compared to older age groups (P ¼ 0.007). could be initiated that might delay the progression of renal
Pre-test scores were significantly higher among at least high- disease. It could at the same time prepare the patient for RRT
school graduates (Po0.03). Sex and CKD stage were not or pre-emptive renal transplantation in the future.
associated with better test scores. An early diagnosis of CKD would aid in the appropriate
management of its complications and move patients
DISCUSSION gradually into RRT. In our study though, 63% of the patients
In this study, the majority of the patients consulted a phy- were already in CKD stage 5, and needed to start dialysis
sician prior to their consult at our hospital. Despite consul- immediately. The morbidity and higher cost associated with
tations with physicians, patients still had a very poor grasp of delayed initiation of dialysis or the need for emergency
their illness and treatment options. This negative finding dialysis may have been avoided with the educational
emphasizes the essential role of physicians in communicating opportunities a longer pre-dialysis period might have
health risks to patients. Physicians’ lack of awareness and afforded. A study among ESRD patients in Spain noted that
knowledge regarding CKD may contribute to patients’ inaccu- the difference in cost between unplanned and planned
rate perceptions or their failure to comprehend the infor- dialysis amounted to US$ 675,978.13
mation. The number of physician visits did not significantly Patients had a mean score of only 7.0±5.11 (maximum
correlate with patient’s perceived CKD knowledge. score 30) points in their baseline CKD knowledge (overall
When patients were asked to rate their level of perceived pre-test) that improved to 23.0±4.5 points after completing
knowledge, the majority reported little or no knowledge of the CKD modules. This shows the efficacy of the education
their kidney disease. Factors that can contribute to deficient program in improving patient knowledge.
perceived knowledge may include difficulties in commu- Patients however scored low in identifying signs and
nicating or educating patients given the few follow-up visits symptoms of CKD, perhaps because many are nonspecific
and complexity of CKD patient care. In addition, educational and easily disregarded by patients. Informing them about the
level may also influence patients’ perceived knowledge, as common signs and symptoms of renal disease is thus
shown by Finkelstein et al,10 where those who had some essential as it can modify the health-care-seeking behavior
college education reported having higher levels of knowledge of people in general, and can avoid delayed referrals to
than those with lower levels of education. In our study, the health-care professionals.

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meeting report RA Danguilan et al.: Education and counseling program for CKD

One study noted that the insidious evolution of CKD led DISCLOSURE
most patients to seek medical assistance only when they RAD received consulting fees from Pfizer, lecture fees from Pfizer,
experienced overt uremic symptoms and complications, thus Pascual, Roche, and Janssen, and grant support from Genzyme,
Janssen, Novartis, and Degas. CBCC received lecture fees from
delaying initiation of RRT and increasing patient morbidity.13 Sanofi and Novartis. The remaining authors declared no competing
Factors significantly associated with higher baseline scores interests.
were younger age and at least a high-school degree. Thus,
special attention should be given to elderly, less educated ACKNOWLEDGMENTS
patients, as they have poorer comprehension of their disease. Publication of this article was supported in part by the National
This may be due to a difficulty in understanding physicians’ Health and Medical Research Council of Australia through an
explanations of their disease, a low priority on health causing Australia Fellowship Award (#511081: theme Chronic Disease in High
Risk Populations) to Dr Wendy Hoy, School of Medicine, the
a delayed consult with a physician until severe symptoms set University of Queensland, and the National Institutes of Health—
in, or the cost involved in seeking medical attention. Age was NIDDK DK079709, NCRR RR026138, and NIMHD MD000182.
the only significant factor associated with better scores after
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