Dialysis has long been an important public health problem. Useful health outcomes and self-care abilities can be effectively achieved by raising the health literacy of hemodialysis patients.
Health literacy (HL) is essential to access, comprehend, assess and use health data allowing patients to make better decisions regarding their health and quality of life. Limited health literacy can hinder a patient’s ability to interact with health services and social networks in the right way, negatively affecting their health outcomes .
Limited health literacy has been linked to low medication adherence, increased hospitalization, morbidity and mortality .
An appropriate HL enables renal patients to cope with a complex course of treatment with a heavy pill burden and required adherence to strong fluids and dietary restrictions. It can also be assumed that frequent and regular interactions with health systems and caregivers that are inherent in hemodialysis patient’s treatment have the potential to enhance HL .
A validated Multidisciplinary Health Literacy Questionnaire (HLQ) has been used to assess several aspects related to a patient’s interactivity with health systems and care delivery .
Based on our knowledge there is paucity of research about health literacy among hemodialysis Egyptian patients. This work aimed to assess the health literacy levels of hemodialysis Egyptian patients.
From March to September 2020, a cross-sectional study was performed at four Hemodialysis units at 4 different Egyptian districts. Adult patients who were receiving hemodialysis treatment for more than 3 months and who were able to communicate with their interlocutors were included in the study while those with a kidney transplant or were actively working for a living donor transplant, being diagnosed with dementia or mental impairment, had <12 months to live or were submitted to a course of renal palliative care were excluded.
A translated questionnaire (Appendix 1: English and Arabic forms) was adopted and it included questions about demographic characteristics and health literacy assessment:
- The demographic characteristics part included questions about patients’ age, gender, education, income level and level of adherence to treatment.
- Assessment of health literacy: this study used the Nutbeam model and incorporated the three main divisions; critical, inter-active and functional health literacy. The health literacy has seven sub-structures: functional literacy (5 components), communicative literacy (4 components), interactive literacy (3 components), critical literacy (3 items), basic health knowledge (4 components), advanced health knowledge (5 components) and patient safety (2 components). The correct answer took one point while the incorrect answer took zero. The final score ranged from 0 - 26 with at least 80% correct answers were taken as satisfactory HL.
The questionnaire items passed though several steps 1: Arabic translation by two bilingual translators; 2: the translators and two healthcare professionals discuss the inconsistencies in the translations; 3: two new translators translated the Arabic version of the questionnaire back to the original language for validity confirmation; 4: reviewing the final translations followed by developing the pre-final version of the questionnaire; 5: a pilot study on ten patients of various ages and education were applied to assess the degree of response, comprehension and reactivity.
Two days’ workshop training and health education was delivered to a team of primary care physicians, and nurses to improve the accuracy of the results including discussion of the aim of this study, detailed explanations and descriptions of methods, and the overall intended contents. The whole team was tested to avoid inter and intra-observer bias. The surveys were delivered by interviewers on an individual basis to enhance the quality and the consistency of the contents. The interview was performed in the first hour of hemodialysis to avoid any potential fluctuations in cognitive function as a consequence of the hemodialysis process. To avoid patient fatigue, these interviews were performed in an interlocking fashion over successive hemodialysis sessions.
In-depth group educational sessions were conducted on how to deal with the disease, proper medication handling and its potential side effects, with an explanation of appropriate management, and how to manage daily activities after the hemodialysis session. Expansion of these health education sessions in addition to laboratory testing to include many other patients was recommended by all included patients.
3. Sample Size
The number of patients to be selected was estimated using the following equation: n = (z2 × p × q)/D2. Since the actual prevalence of health literacy was unknown, so yes equaled no (p = q = 0.5, D = 0.05). Based on these assumptions, 377 patients were required. Accounting for a dropout of 15%, 445 patients were recruited. Out of 445 questionnaires distributed, 439 patients accepted to participate while 6 patients refused resulting in a response rate of 98.6%.
4. Statistical Analysis
Analysis of data were performed using SPSS version 22.0 (SPSS Inc., Chicago, IL, USA). Data were presented as mean ± SD or number and %. Kruskal-Wallis test was used for comparison of more than 2 groups with non-parametric information while Mann-Whitney test was applied to compare between two groups. Spearman correlation was applied. Logistic regression was applied to detect the predictors of health literacy. Linear regression analysis for using pathway analysis was applied for scores of health literacy and ages and education level of the patients. A p-value was considered significant if <0.05.
Patients’ characteristics were illustrated in Table 1, kidney disease is mainly distributed among males by 57.6%, those > 60 years old by 40.8% and participants of low education by 85.6%. Primary care-giving was mainly by self or spouse (58.5%) followed by child or child spouse (35.1%). Kidney transplant was reported among 10.3% of the studied participants (Table 1).
Health literacy was satisfactory among 35.5% of hemodialysis patients while it was unsatisfactory among 64.5% of them (Figure 1).
Table 1. Patients’ characteristics.
Figure 1. Health literacy among the studied participants.
The average total score of health literacy questionnaire was (15.53 ± 4.32) out of 26 possible criteria and it was distributed as 2.90 ± 1.26 for functional literacy, 3.10 ± 1.26 for basic health knowledge, 1.65 ± 1.21 for communicative literacy, 2.53 ± 0.70 for interactive literacy, 1.75 ± 1.30 for advanced health knowledge, 1.74 ± 0.48 for critical literacy, and 1.83 ± 0.93 for patient safety.
Among of these 7 sub-divisions, participants got high scores in basic functional literacy, health knowledge and interactive literacy but relatively low scores in advanced health knowledge, communicative literacy, critical literacy and patient satisfaction. Health literacy was high among young ages < 50 years old (17.94 ± 3.46 vs. 15.51 ± 3.96 and 13.75 ± 4.32 for >50 - 60 years old and >60 years old respectively), males (16.25 ± 4.30 vs. females 14.54 ± 4.19), moderate to high education (18.58 ± 2.70 vs. 11.97 ± 2.93, when self or spouse was responsible for primary care-giving (16.82 ± 3.74 vs. others 13.71 ± 4.46) and those had kidney transplant (20.37 ± 2.19 vs. no transplant 14.97 ± 4.16) (P < 0.001). Health literacy was high among those with moderate income in comparison to low income ones (20.55 ± 2.07 vs. 13.89 ± 3.53), also adherence to medication versus no adherence (17.72 ± 3.20 vs. 12.91 ± 4.02) (P < 0.001) (Table 2).
A binary logistic regression was processed to highlight the responsible factors like age, gender, education, type of caregiver, and if the patient underwent kidney transplant for the liability that participants may have poor health literacy. For knowledge, the logistic regression sample was statistically significant, χ2 = 311.27, p < 0.001. The model explained 69.8% (NagelkerkeR2) of the variance in poor health literacy and correctly classified 84.3% of cases. It was found that poor health literacy was associated with low income (OR = 2.54, CI 95%: 1.66_3.89, p < 0.001), of increasing age (OR = 0.12 CI 95%: 0.07_0.19, p < 0.001), low education (OR = 1.08, CI 95%: 1.04_1.11, p < 0.001) and the patient did not undergo kidney transplant (OR = 4.19 CI 95%: 1.12_15.62, p = 0.033) (Table 3).
A significantly negative correlation was reported between age and the health literacy items (P < 0.05) while a significantly positive correlation was reported with the educational level (P < 0.05) (Table 4).
Age and education are strong predictors to health literacy items especially advanced health knowledge where age (β = ?0.62, CI 95% (?0.75) - (?0.48) and education (β = 0.80, CI 95% 0.72_0.88) (Figure 2).
Table 2. Demographic characteristics and health literacy of hemodialysis patients (n = 439).
Table 3. Predictors of limited health illiteracy among the studied patients.
*: significant (Reference).
Table 4. Correlation between age and education level the patients and health literacy items.
Kidney disease was mainly reported among males (57.6%), those >60 years old (40.8%) and participants of low education (85.6%). Primary care-giving was mainly by self or spouse (58.5%) followed by a responsible child or child spouse (35.1%). Kidney transplant was reported among 10.3% of the studied participants. These results were supported by Qobadi et al.,  in Iran and Shih et al.,  in Chinese Taipei.
Figure 2. Path analysisof health literacy scores in relation to age and education level (n = 439).
Health literacy of the current hemodialysis patients was satisfactory among 35.5% while unsatisfactory among 64.5% of them. This finding agrees with Qobadi et al.,  in Iran who revealed that 65.2% his participants had considerable difficulty to understand and reading the information. On the contrary Green et al.,  in USA, demonstrated a low HL in 16% of his patients. Murali et al.,  in Australia, reported that limited HL ranges 8.4% - 49.6% in ESKD patients versus 16.3% - 63.3% in non-dialysis CKD patients. In the USA, Green et al.,  found low HL ranging from 7% to 37% at the participating units of dialysis while Cavanaugh et al.,  reported a Low HL up to 50%.
This wide difference in the reported percentage of HL may be due to the different instruments used to measure HL or it may be a result of increased frequency of hospitalizations of dialysis patients, times of exposure to medical preparation per week in addition to their participation in educational programs or receiving health materials and also their repeated contact with the responsible health team in contrast to the normal population or other patients.
The average total score of HL questionnaire was (15.53 ± 4.32). The participants got high scores in basic functional literacy, basic health knowledge and interactive literacy but relatively low scores in the advanced health knowledge, communicative literacy, critical literacy and patient’s satisfaction. HL was high among young ages < 50 years old (17.94 ± 3.46) vs. (15.51 ± 3.96 and 13.75 ± 4.32) for those aged > 50 - 60 years and > 60 years respectively, males (16.25 ± 4.30 vs. females 14.54 ± 4.19), moderate to high education (18.58 ± 2.70 vs. 11.97 ± 2.93), when self or spouse is responsible for primary care-giving (16.82 ± 3.74) vs. others (13.71 ± 4.46) and those have kidney transplant (20.37 ± 2.19) vs. no transplant (14.97 ± 4.16). All of these results agree with Shih et al.,  in Chinese Taipei.
Health literacy was low among those with low income patients. These results agree with Cavanaugh et al.,  in the USA and Grubbs et al.,  in San Francisco who reported that lower income among participants, lower health literacy compared to higher health literacy. Grubbs et al.,  found that HL scores were significantly lower among those > 65 years old and with incomes less than $30,000 annually. Lee et al.,  in the USA found that about 30% of adults were found to have low (inadequate or marginal) health literacy with lower household income. Lastrucci et al.,  in Italy reported similar results (OR 2.03, 95% CI: 1.28 - 3.21). In contrast, Mollakhaili, et al.,  in Iran found that monthly income and education were not meaningfully related.
HL score was (17.72 ± 3.20) for those adherent to medication (54.4%) versus non-adherent (45.6%) (12.91 ± 4.02). This result agrees with Cavanaugh et al., , Noureldin et al.,  and Collins et al.,  in the USA who reported also that prevalence of no adherence to medication in ESRD ranged from 22% to 74%. In Australia, Ghimire et al.,  found non-adherence among over 50% of the dialysis patients. Low HL and hence low adherence is a direct cause of high mortality, increased utilization of health resources and poor quality of life of dialysis patients. Green et al.,  patients with a low HL cannot read medication labels, medication instructions, and health brochures or better communicate and understand the health care staff which leads to taking inappropriate medications, discontinuing the prescribed diet, and selecting inappropriate treatment option.
The present finding revealed that low HL was significantly linked to the low educational level (OR = 1.08, CI 95%: 1.04 - 1.11), increasing age (OR = 0.12 CI 95%: 0.07 - 0.19), and with kidney transplant (OR = 4.19 CI 95%: 1.12 - 15.62). Paasche-Orlow et al.,  in the USA reported high literacy among young ages (OR = 15.9) comparing to low literacy among old ages (OR = 37.9). Murali et al.,  in Australia found that as age increased, there was “less capability to actively manage the health” (OR = 1.43). On the contrary Cavanaugh et al.,  in the USA revealed no significant association between age, gender and race of the participants and HL.
Education is a strong predictor to health literacy items especially advanced health knowledge (β = 0.62, CI 95% 0.72 - 0.88). Paasche-Orlow et al.,  in USA, Lastrucci et al., (14) in Italy and Murali et al.,  in Australia reported that the lower the educational level, the lower the rate of literacy (OR 2.59, 95% CI: 1.66 - 4.02), in contrast Escobedo et al.,  in the USA reported that assessment of educational level alone is not predictive of health literacy; (18%) of participants had a high school or college education yet scored as having a limited health literacy.
Bains et al.,  in the USA and Qobadi et al.,  in Iran reported that low HL is a predictor of kidney knowledge. Lower disease-specific knowledge due to low literacy causes difficulty in understanding or reading disease specific medical information and management and low ability to communicate with medical staff.
Health literacy helps communication between patients, their caregivers, and health care providers to enhance the transmission, better understanding and useful application of information for successful health decision-making. In all patients whatever their conditions, a lower level of HL leads to less knowledge of one’s health status, less participation in self-care especially when cognitive impairment is high in patients on dialysis and hence repeated hospitalization and death . A broad understanding of these relationships will facilitate the development of targeted interventions to enhance health literacy, quality of care, and outcomes in renal patients. Designing appropriate educational interventions during the initial stages of CKD to prevent ESRD, increase the burden of renal failure and manage disease is essential.
6. Strengths and Limitations
The present work was carried out on Egyptian dialysis patients, thus generalization of the findings cannot necessary be achieved to all kidney patients in the world. Also, all data were self-reported with no gold standard for health literacy assessment, so this is a point of debate . A post-test to assess HL post-health education was needed. But this work is the first to assess and investigate health literacy in a representative sample of patients on dialysis in Egypt. As noted 98.60% of the patients responded to the study which is so acceptable. This work included 439 participants providing statistically high power with consequently less Type 2 errors probability .
There was a prevalent low health literacy among the studied regular hemodialysis patients which was affected by education, age and income and in turn it affects the adherence to treatment. Understanding the linkage between HL and self-care attitudes should enhance efforts to improve hemodialysis outcomes.
The authors would like to thank all the participants for their time and kindness.
All persons who meet authorship criteria are listed as authors, and all authors certify that they have participated sufficiently in this work. Said Sayed Ahmed Khamis, Muhammad Abdul Mabood Khalil and Mahmoud Mohammed Emara have the role of getting the idea and final revision, Zeinab A. Kasemy had the role of performing the statistical analysis, writing the methodology and results sections, final revision and publishing, Marwa Salah Ahmed Elnashar had the role of collecting the needed data and writing of the introduction and discussion.
All required data are included in the manuscript.
Ethics Approval and Consent to Participate
This study was approved by the Committee for Medical Research Ethics at our Faculty of Medicine with ID: 191219INTM57.
This study was obtained from all participants after explaining the main purpose of the research work. Consent for publication: The authors provide consent to publish.
The authors are solely responsible for all contents.
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