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. 2023 Mar 6;10(6):3810–3816. doi: 10.1002/nop2.1639

A questionnaire to assess the health information literacy of patients with intermediate‐stage chronic kidney disease

Fei Zhao 1, Jianyi Wang 1, Piao Chen 1, Hu Yimin 1,
PMCID: PMC10170913  PMID: 36879379

Abstract

Aim

To investigate the status and influencing factors of health information literacy in patients with intermediate‐stage chronic kidney disease (CKD).

Design

A prospective clinical study.

Methods

We used a CKD health information literacy questionnaire to survey 130 patients with intermediate‐stage CKD and valuate their health needs and health knowledge. We performed the study in strict accordance with the Guidelines for Clinical Trial Protocols. We registered the study in the Chinese Clinical Trial Registration Center (registration No. ChiCTR2100053103; approval No. K56‐1).

Results

The overall health information literacy of CKD was relatively low. Low education level, advanced age and unemployment were influencing factors. The scores of assessment ability, literacy awareness, application ability, integration ability and CKD health knowledge reserve were relatively low. The generalized linear model showed that the older the men, the lower their health information literacy.

Keywords: assess, intermediate‐stage CKD, questionnaire, the health information literacy

1. INTRODUCTION

The worldwide prevalence rate of chronic kidney diseases (CKD) was 14.3% (Ene‐Iordache et al., 2016) in 2016. In China, the prevalence of CKD is 16.8% (Duan et al., 2020). The 2011–2016 National Health and Nutrition Examination Survey (NHANES) reported that unadjusted CKD awareness was 9.6%, 22.6%, 44.7% and 49.0% in the minimal‐, low‐, intermediate‐ and high‐risk groups, respectively (Chu, McCulloch et al., 2020). According to the Kidney Disease: Improving Global Outcomes (KDIGO) guidelines, CKD is categorized into five stages based on the glomerular filtration rate (GFR). Stages 3 and 4 represent intermediate‐stage CKD with GFRs of 30–59 mL/min/1.73 m2 (Chen et al., 2019). Several cases of CKD progress to irreversible renal failure (Ene‐Iordache et al., 2016), requiring dialysis or kidney transplant. Health information literacy, which is the core of health literacy (Zhou et al., 2019), refers to the ability of individuals to obtain, understand and apply health information and services to promote their own health (Kobayashi et al., 2015). Studies have shown that complications and mortality in patients undergoing peri‐dialysis are greater than those in patients during the stable period of dialysis who have health literacy (Kalantar‐Zadeh et al., 2017). Additionally, life quality during peri‐dialysis is worse than during the stable period of dialysis. However, the effective implementation and supervision of health education management for CKD patients undergoing peri‐dialysis is lacking, and the impact of health education management on the health information literacy of patients with intermediate‐stage CKD is unknown. Therefore, it is of great clinical significance to conduct health management for patients with intermediate‐stage CKD, so that they can have adequate health education knowledge and coping ability to improve the survival status during the peri‐dialysis period (Kalantar‐Zadeh et al., 2017; Nee et al., 2017). In this study, we used a questionnaire (Liu et al., 2020) to assess the health information literacy of patients with intermediate‐stage CKD and to develop effective strategies to promote health information literacy. We conducted a prospective clinical study to assess the health information acquisition ability, health information evaluation ability, health information literacy awareness, health information application ability, health information integration ability and CKD health knowledge reserve of patients with intermediate‐stage CKD.

2. BACKGROUND

The first 3 months of stage 5 CKD, characterized by a GFR < 15 mL/min, represent the peri‐dialysis period (Kalantar‐Zadeh et al., 2017; Niedorys et al., 2020). The complications and mortality rates during peri‐dialysis are higher than those during stable dialysis (Kalantar‐Zadeh et al., 2017). Improving health literacy in patients with early‐stage CKD may help sustain positive illness perception and self‐efficacy and improve self‐management (Suarilah & Lin, 2022). There is little evidence on the health information literacy of CKD patients in China. We used a questionnaire (Liu et al., 2020) to investigate and analyse the health information literacy in CKD patients, thus providing baseline data on health information acquisition ability, health information evaluation ability, health literacy awareness, health information application ability, health information integration ability and CKD knowledge reserve and pointing out the direction for future research.

3. THE STUDY

3.1. Study design

Figure 1 shows the design of our study.

FIGURE 1.

FIGURE 1

Study design.

3.2. General information

3.2.1. Sample size estimation

According to a previous study (Tao, 2021), the excellent rate of self‐management was 78% before intervention and 96% after intervention. According to the opinions of clinicians, the optimal threshold value was set as 10%. The sample ratio of the experimental group and the control group was set at 1:1, the test level of a single case (α) was 0.05 and the test efficacy (1 − β) was 90%. According to the enrollment time of 1–1.5 years and follow‐up time of 6 months, the two groups were evenly enrolled; the lost to follow‐up was 10%. The threshold of sample size estimation was 10%. The endpoint of the study was the 1.5‐year event incidence rate of CKD. The Test for Two Occupants module of the statistical software PASS11 was used to calculate the estimated sample size for each group (65 cases per group; 130 cases total).

3.2.2. Inclusion criteria

The inclusion criteria were the following: (1) voluntary participation in the study; (2) diagnosis with stage 3 or 4 CKD in accordance with the KDIGO guidelines (Chen et al., 2019); (3) ≥ 18 years of age; and (4) able to meet the standards of cognitive capacity with the ability to obtain/understand healthcare information.

3.2.3. Exclusion criteria

The exclusion criteria were the following: (1) presence of acute respiratory distress syndrome, severe infections of lung function grade 4 and heart function grade 4 and severe loss of heart, lung and other organs; (2) presence of mental disorders, cognitive dysfunction, senile dementia and other diseases affecting cognition; (3) patients with serious attention or hearing impairment; and (4) patients unable to provide signed informed consent.

3.2.4. Questionnaire

In this study, we adopted the CKD health information literacy questionnaire with six dimensions and 24 items. The overall Cronbach's A coefficient was 0.922, and the Cronbach's A coefficient of each dimension ranged between 0.722 and 0.939 (Liu et al., 2020). Therefore, the questionnaire had adequate validity. We used the Likert level 5 scoring method, with 1–5 points for each item. Some entries were scored in reverse, with a total score of 120 (96, excellent; 72, passing). The higher the total score, the higher the level of CKD health information literacy.

3.2.5. Survey methods

A convenience sampling method was used to select 130 outpatient and inpatient patients who met the inclusion criteria.

3.2.6. Quality control of clinical trials

Investigators should adopt standard operating procedures to ensure the quality control of clinical trials and the implementation of quality assurance systems. Quality control must be applied at every stage of data processing to ensure that all data are reliable and processed correctly.

3.3. Analysis

For data analysis, we used SPSS21.0 statistical software. We expressed the data as mean ± standard deviation (χ±S). We used t‐tests for comparisons between two groups and ANOVA for comparisons among several groups. We analysed count data, expressed as percentage (%), using the χ2 test. To assess interactions, we used a generalized linear model.

3.4. Ethics

Our study met the guidelines of the Declaration of Helsinki. We conducted our study in strict accordance with the Guidelines for Clinical Trial Protocols.

4. RESULTS

4.1. Basic information

The questionnaire adopted the Likert 5‐level scoring method, with 1–5 points for each item. Some entries were scored in reverse, with a total score of 120 (96, excellent; 72, passing). Among them, 13 cases (10%) failed, 55 cases (42.31%) passed and 62 cases (47.68%) were excellent (Figure 1). There were statistically significant differences in education level, age and employment status (p < 0.001) but no statistically significant differences in sex (p > 0.001; Table 1).

TABLE 1.

Basic information of patients with different levels of CKD health information literacy

Project Failed (13 cases) Passed (55 cases) Excellent (62 cases) Total (130 cases) p
Sex
Male 7 (53.85%) 26 (47.27%) 42 (67.74%) 75 (57.69%) 0.078
Female 6 (46.15%) 29 (52.73%) 20 (32.26%) 55 (42.31%)
Age
≤59 3 (23.08%) 32 (58.18%) 48 (77.42%) 83 (63.85%) 0.001**
≥60 10 (76.92%) 23 (41.82%) 14 (22.58%) 47 (36.15%)
Education level
Primary school 8 (61.54%) 13 (23.64%) 1 (1.61%) 22 (16.92%) <0.001**
Middle school 5 (38.46%) 36 (65.45%) 32 (51.61%) 73 (56.15%)
University 0(0%) 6 (10.91%) 29 (46.77%) 35 (26.92%)
Employment status
Working 1 (7.69%) 18 (32.73%) 35 (56.45%) 54 (41.54%) 0.001**
Not working 12(92.31%) 37 (67.27%) 27 (43.55%) 76 (58.46%)
Residence
City 9 (69.23%) 41 (74.55%) 53 (85.48%) 103 (79.23%) 0.223
Rural 4 (30.77%) 14 (25.45%) 9 (14.52%) 27 (20.77%)
Medical insurance status
Public expense 0 (0%) 2 (3.64%) 2 (3.23%) 4 (3.10%) 0.577
Health care 10 (76.92%) 46 (83.64%) 55 (88.71%) 111 (85.38%)
Own expense 3 (23.08%) 7 (12.72%) 5 (8.06%) 15 (11.54%)

4.2. CKD health information literacy score

In the analysis of the CKD health information literacy score, education level, age and employment status were statistically significant (p < 0.001). There was no statistical significance in sex (p > 0.05; Table 2).

TABLE 2.

CKD health information literacy score analysis

Project Number of cases All the number p
Sex
Male 75 94.48 ± 16.81 0.265
Female 55 91.33 ± 14.42
Age
≤59 83 97.277 ± 13.122 <0.001**
≥60 47 85.851 ± 17.714
Employment status
Working 54 99.796 ± 11.266 <0.001**
Not working 76 88.421 ± 16.994
Education level
Primary school 22 76.32 ± 16.53 <0.001**
Middle school 73 93.38 ± 14.34
University 35 103.23 ± 7.91

Note: Pairwise comparison of education level (p < 0.001).

4.3. Analysis of various dimensions of CKD health information literacy

The comparative analysis of health information acquisition ability, health information evaluation ability, health information literacy awareness, health information application ability, health information integration ability and CKD health knowledge reserve had statistical significance (p < 0.001; Table 3).

TABLE 3.

Dimension analysis of CKD health information literacy

Dimensions of health information literacy Mean p
Acquisition ability 15.41 ± 6.603
Evaluation ability 11.36 ± 3.103 <0.001**
Literacy awareness 4.89 ± 2.30 <0.001**
Application ability 5.62 ± 2.40 <0.001**
CKD knowledge reserve 8.82 ± 2.24 <0.001**
Integration ability 7.27 ± 3.448 <0.001**

Note: Reference: Acquiring capabilities.

4.4. Generalized linear model

We used a generalized linear model that incorporated the CKD health information literacy score as the dependent variable. In the model, the main effects included education level, age, sex and employment status, and the interaction effects were education level × age, education level × sex, education level × employment status, age × sex, age × employment status and sex × employment status (sex: male = 1, female = 2; age: ≤59 years = 1, ≥ 60 years = 2; education: primary = 1, secondary = 2, university = 3). In the CKD health information literacy interaction model, the score of male health information literacy was higher for patients ≤59 years of age than for patients ≥60 years of age (B = 12.429, 95% CI: 1.815–23.043; p < 0.005). The analysis showed that the older the men, the lower their health information literacy (Table 4).

TABLE 4.

Generalized linear model analysis of CKD health information literacy (n = 130)

Interactions Score
B (95% CI) p
Between education and age
Primary school and below −28.684 (−39.431, −17.936) <0.001**
High school and below −12.102 (−21.737, −2.467) 0.014*
Age 4.047 (−5.539, 13.633) 0.408
Primary school and below * age 7.637 (−6.765, 22.038) 0.299
High school and below * age 3.958 (−7.411, 15.327) 0.495
Between education and sex
Primary school and below −24.473 (−36.342, −12.603) <0.001**
High school and below −13.743 (−24.226, −3.260) 0.01**
Sex −3.286 (−13.985, 7.413) 0.547
Primary school and below * sex −9.099 (−24.429, 6.231) 0.245
High school and below * sex 5.724 (−6.509, 17.957) 0.359
Between education and employment status
Primary school and below −27.216 (−36.941, −17.491) <0.001**
High school and below −10.764 (−19.048, −2.48) 0.011*
Employment status 3.117 (−5.923, 12.158) 0.499
Primary school and below * employment status 5.841 (−9.092, 20.774) 0.443
High school and below * employment status 6.181 (−4.773, 17.135) 0.269
Between employment status and age
Employment status −0.367 (−20.870, 20.136) 0.972
Age 6.262 (−0.360, 12.885) 0.064
Employment status * age 8.584 (−12.906, 30.074) 0.434
Between employment status and sex
Employment status 6.321 (−2.804, 15.445) 0.175
Sex −3.157 (−9.789, 3.476) 0.351
Employment status * sex 7.954 (−3.347, 19.256) 0.168
Between age and sex
Age −6.703 (−15.054, 1.647) 0.116
Sex 4.706 (−2.981, 12.392) 0.23
Age * sex 12.429 (1.815, 23.043) 0.022*

Note: Reference: education (college and above), age (≥60), sex (female), employment status (not working).

5. DISCUSSION

Risk factor control is important in the treatment of CKD (Shan et al., 2018). Previous studies have shown that advanced age, diabetes, hyperlipidemia and hypercholesterolemia are risk factors for CKD (Duan et al., 2020; Shan et al., 2018). There are several challenges in the nursing management of patients in peri‐dialysis including lack of disease awareness, lack of psychosocial support, presence of diabetes and hypertension, presence of multiple comorbidities, poor compliance, increased risk of death and increased treatment costs. Therefore, early identification and interventions are important in the nursing management of CKD.

Health information literacy evaluation tools are commonly used in China (Wang et al., 2013). These tools, however, do not address relevant information on nephrology and fail to evaluate the health information literacy of CKD patients. In this study, we used a questionnaire (Liu et al., 2020) to investigate the health information literacy of patients with intermediate‐stage CKD. The questionnaire could be completed in less than 15–20 min (Patterson & Brandner, 2017). The average completion time was 12 min. The questionnaire represents a valid, reliable and time‐efficient tool for the development of individualized health education programs and for the implementation of medical service resources. According to our findings, acquisition ability had the highest score (15 ± 6.603), followed by evaluation ability, CKD knowledge reserve, integration ability, application ability and literacy awareness. Each dimension was statistically significant (p < 0.001), indicating that literacy awareness, CKD knowledge reserve, application ability and integration ability are important aspects. Training and management of CKD patients should focus on the education of patients and on family‐community‐outpatient health education management. In this way, a seamless connection could be constructed to improve the health information literacy of patients with intermediate‐stage CKD.

Sex in CKD health information literacy score analysis showed no statistical significance (Table 2), but the generalized linear model interaction results showed that the older the men, the lower their health information literacy (Table 4). Therefore, in clinical practice, older men should receive appropriate interventions. Only 47.68% (62/130) of CKD patients had adequate information literacy scores, similar to the study reported by Stømer (Elisabeth Stømer et al., 2020). The low level of health information literacy of CKD patients makes it difficult for self‐management. Advanced age, low education level and unemployment affected the health information literacy of these patients (Table 1; p < 0.001). According to the theoretical model of knowledge‐belief‐action, knowledge is the foundation, and beliefs are the driving force. Patients with higher self‐management behaviours have disease‐related knowledge, can quickly identify health information and apply their knowledge and skills for dietary control, exercise and psychological adjustment, and make timely health decisions to adjust their lifestyles (Qu & Telzer, 2017). Based on these concerns, we propose the following measures.

CKD knowledge reserve: Studies on health information literacy lack specificity. The results of our study showed that there was a statistically significant difference between knowledge reserve score (8.82 ± 2.24) and the ability to obtain information (15.41 ± 6.603) in patients with intermediate‐stage CKD (p < 0.001). It is important to use plain language in the development of health education courses. These courses may help patients gain more disease‐related knowledge, make correct decisions on their health and enhance their confidence, thereby establishing a positive illness perception.

Hospital Professional Support: Education level was related to CKD health information literacy score as previously reported (Wang et al., 2020). Employment status and age were related to CKD health information literacy score, as previously reported (Niedorys et al., 2020). We propose that experienced nurses be at the one‐stop service desk to assist patients and improve their integration ability. We advocate the establishment of Wetchat groups, led by medical staff and encourage peers in Wetchat groups. It is crucial to provide emotional support, form an atmosphere of mutual help, assist patients to accept their own psychological state and increase their sense of belonging. Finally, it is important to assist patients when filling out the questionnaire to clarify their own shortcomings and encourage patients to actively participate in communal activities.

5.1. Popular science

Due to the popularity of mass media and online apps, the ability to obtain information has improved. However, our study found that the ability to identify reputable, reliable information is weak. In other words, mass media and online apps cannot improve the ability of patients to actively participate in health decision‐making (López, et al. 2016, Wang, Hung et al. 2019). Nurses need to assist patients in identifying reputable information. We should actively identify ways to develop and apply specific apps. Additionally, to improve the lifestyle and self‐management ability of patients, we could generate an intelligent platform, which would guide them to clarify their health goals and complete the established action plan.

6. LIMITATIONS

The sample size of this study was relatively small, which may affect the objectivity of the outcome (Ma et al., 2016; Wang, 2016; Zhang et al., 2016). The patients were recruited mainly from tertiary hospitals, and there was a lack of patients from community hospitals. The questionnaires, which were filled out by patients, are subjective in nature.

7. CONCLUSION

Advanced age, unemployment and education level were influential factors in the health information literacy of patients with intermediate‐stage CKD. Interventions need to target the health information literacy of these patients, e.g. through the development of digital empowerment health+ apps and courses. Future studies should assess the impact of health coaching techniques on the health information literacy of patients with intermediate‐stage CKD.

FUNDING INFORMATION

This study was not funded and was self‐funded.

CONFLICT OF INTEREST STATEMENT

The authors declare no conflict of interest.

ETHICS STATEMENT

Our study met the guidelines of the Declaration of Helsinki. We conducted our study in strict accordance with the Guidelines for Clinical Trial Protocols. We registered the study in the Chinese Clinical Trial Registration Center (registration No. ChiCTR2100053103; approval No. K56‐1).

TRIAL REGISTRATION

The trial has been registered in the Chinese Clinical Trial Registration Center (Registration Number: ChiCTR2100053103).

Supporting information

File S1.

ACKNOWLEDGEMENTS

We would like to thank all the team members who participated in this study and the professionals of molecular imaging and statistics who provided guidance and help. The statistical methods in this paper have been reviewed by experts in biostatistics from the Fifth Affiliated Hospital of Sun Yat‐Sen University.

Zhao, F. , Wang, J. , Chen, P. , & Yimin, H. (2023). A questionnaire to assess the health information literacy of patients with intermediate‐stage chronic kidney disease. Nursing Open, 10, 3810–3816. 10.1002/nop2.1639

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

File S1.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.


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