The Effect of Health Literacy on Health-Related Quality of Life Among Saudi Women With Chronic Diseases

Introduction

Chronic noncommunicable diseases (NCDs) are long-duration diseases marked by a slow progression (Sidossis & Kales, 2022). NCDs account for 71% of overall total deaths worldwide (World Health Organization [WHO], 2021). More prevalent among women than men (Quiñones et al., 2019), two thirds of all deaths and disabilities among women have been attributed to NCDs (Bonita & Beaglehole, 2014). Women's biological makeup and roles in society make their health concerns unique, increase their vulnerability, and shape their experience with NCDs (WHO, 2019). Feminine characteristics have been found to be associated with a higher rate of NCDs (Ballering et al., 2020). The health-related quality of life (HRQOL) of women is also substantially lower than that of men in the context of NCDs (Hajian-Tilaki et al., 2017).

Several studies have reported that health literacy, defined as the skills that influence an individual's capability to obtain, comprehend, appraise, and use health information to achieve well-being (Nutbeam, 2008), has been linked to HRQOL (Ehmann et al., 2020). However, some studies have found no significant relationship between health literacy and HRQOL in patients with an NCD (Couture et al., 2017). A systematic review and meta-analysis revealed that claims of a moderate relationship between health literacy and HRQOL require further supporting evidence (Zheng et al., 2018). Nutbeam (2008) highlighted three types of literacy, including functional (basic skills for reading and writing health information), interactive (advanced skills for extracting and applying health information), and critical (more advanced skills for analyzing and utilizing health information to control life events). Most prior studies have approached health literacy from the unidimensional aspect (Couture et al., 2017; Ehmann et al., 2020), that is, functional health literacy (Lastrucci et al., 2019). Although the concept health literacy may embody negative connotations such as victim blaming (Frosch et al., 2014), addressing health literacy can help individuals overcome key barriers to achieving well-being (Rowlands et al., 2017) and is one of the determinants of reaching equity in health and empowering individuals to control their health, search for reliable information, and engage in health decision making (Tufts et al., 2009). In different countries, limited health literacy is a prevalent issue, with studies finding limited/low health literacy levels ranging from 25% up to 70% (Lastrucci et al., 2019; Rajah et al., 2019; L. Zhang et al., 2020).

NCDs are also known as lifestyle diseases, which highlights the critical importance of considering lifestyle behavior, defined as the totality of an individual's life habits that influence all aspects of the health prognosis for patients (Sidossis & Kales, 2022). As skills related to obtaining and applying health-related information may help individuals adopt healthy behaviors, health literacy impacts individuals' healthy lifestyle characteristics and behaviors (Uemura et al., 2021). Inadequate health literacy may promote unhealthy choices and increase risky behaviors. Thus, health literacy mediates the relationship between an individual's socioeconomic status and their lifestyle behaviors (Adams et al., 2013). However, the evidence showing the mediating role of healthy lifestyle behaviors in the relationship between health literacy and health outcomes is unclear.

Support from healthcare providers, which includes the provision of patient-centered care, is also essential in reducing health burdens. Patient-centered care aligns with a patient's desires, values, and needs and includes the patient in related discussions and decision making (Mead & Bower, 2000). Furthermore, support from healthcare providers in terms of responding to a patient's requests and preferences has a strong effect on health outcomes (Y. C. Chen et al., 2018). Health literacy may promote the ability of a patient to participate actively in care decision making and to engage with healthcare providers in conversation (Parnell et al., 2019). Patient-centered care improves health status (Stewart et al., 2000). The main components of the patient-centered care model are exploring the disease and illness experience, finding common ground, and understanding the whole person (Scambler & Asimakopoulou, 2014). Although this model refers mainly to the medical field with a focus on the physician–patient relationship, these components also align with nursing care (Kitson et al., 2012). Previous studies have examined the impact of patient-centered care on health outcomes separately from health literacy (Altin & Stock, 2016). However, the role of patient-centered care in the relationship between health literacy and patient health outcomes remains unclear. Moreover, patient-centered care has not been explicitly explored in women, although gender differences in terms of patient–provider communication have been identified (Okunrintemi et al., 2018). Prevention, management, and therapeutic approaches for care of patients with NCDs must be gender specific (Oorschot et al., 2021).

Theoretical frameworks have been developed to explain how health literacy affects individual health factors, such as disease and self-care knowledge, health risk behavior, and provider–patient interaction, as mediating factors (S. D. Lee et al., 2004; Nutbeam, 2000; Paasche-orlow & Wolf, 2007). On the basis of the existing literature and theoretical frameworks, a conceptual model was hypothesized for this study (Figure 1). In this model, health literacy and its dimensions exert direct and positive effects on healthy lifestyle behaviors, patient-centered care, and quality of life. Moreover, healthy lifestyle behaviors and patient-centered care also exert direct and positive effects on quality of life. Thus, the relationship between health literacy and quality of life is mediated through healthy lifestyle behaviors and patient-centered care. This study was developed to examine the relationship between health literacy and HRQOL and to determine the mediating roles of healthy lifestyle and patient-centered care on this relationship among women in Saudi Arabia.

F1Figure 1.:

Hypothesized Model

Methods Design, Samples, and Settings

A cross-sectional design was adopted in this study, and a convenience sample of 300 Saudi women diagnosed with any NCD was recruited. The sample size was based on the results of structural equation modeling (SEM) for statistical analysis. According to Kline (2015), a minimum sample size of 200 is needed for using SEM. The participants were recruited from 20 randomly selected primary healthcare centers (PHCs) in two cities in Saudi Arabia. All of the selected PHCs were publicly funded and selected using a web-based program (https://www.random.org/). Patients with NCDs routinely visit these centers every 3–6 months. On average, 15 participants were recruited from each PHC based on the inclusion criteria of being 18–65 years old and having at least one NCD. Women were eligible if they were informed by a doctor that they had arthritis, heart disease, high blood pressure, epilepsy, obesity, stroke, cancer, diabetes, or a chronic respiratory disease (e.g., chronic obstructive pulmonary disease, asthma) and were a regular patient at the PHC. Exclusion criteria included being pregnant, not being a Saudi citizen, and not attending regular follow-ups. After being confirmed for eligibility, each woman was invited to participate in the study. Study data were collected between June 2020 and February 2021 using face-to-face, structured interviews in a private room in the PHC. WHO and Global Health Cluster colleagues have developed standard operating procedures for data collection during the COVID-19 pandemic (WHO, 2020). These protocols were followed along with Saudi Arabia's precautionary and preventive COVID-19 measures, including social distancing (maintaining at least a 1-meter distance with others), wearing masks, checking temperature every morning, and self-quarantining for 14 days after coming in contact with anyone with a confirmed or suspected case of COVID-19.

Measurements

The demographic characteristics of the participants were assessed using survey questions. Comorbidity, defined as the presence of more than two NCDs, was also assessed using disease count. The participants were also asked about their use of acute care settings (hospital admissions and emergency department visits) during the past 12 months.

The instruments used to assess the study variables were in Arabic. Three instruments without prior Arabic versions were translated from their original English using the integrated method for the adaptation and translation of measures (Sidani et al., 2010), which included an assessment of conceptual equivalence for content validity (comprehension and cultural relevance) conducted by five bilingual and bicultural experts. Some adaptations were made based on the content validity index and discussions with experts. Next, the forward translation was conducted by two bilingual translators with medical backgrounds. Pilot testing of the set of items was conducted on 30 patients with an NCD to test the reliability and assess participant understanding of the instruments.

Health literacy

The All Aspects of Health Literacy Scale (AAHLS; Chinn & McCarthy, 2013) was used to measure health literacy based on Nutbeam's framework, which defines health literacy in terms of functional, communicative, and critical health literacy (Nutbeam, 2008). The AAHLS is a 14-item self-reported measure (four functional items, three communicative items, four critical items, and three empowerment items). The first 11 items are rated on a 3-point scale, and the last two items have dichotomous choices. The first three items are reverse coded. The scale is scored by summing the items, with higher scores associated with better health literacy. This instrument is quick and easy to use in primary healthcare settings. Internal consistency was tested for the original scale, with Cronbach's α reliability ranging between .82 and .42 for the total scale and subscales (Chinn & McCarthy, 2013). When used with college students with NCDs, Cronbach's α reliability ranged from .52 to .83 (Barsell et al., 2018). In this study, on that basis of the content validity assessment and adaptation process, one of the empowerment items was removed, as reviewers suggested that the item was not appropriate to the context. Thus, only 13 items were included in the final Arabic version. Pilot testing was conducted, and then the psychometric analysis was performed to assess the scale's construct validity and internal consistency.

Healthy lifestyle behaviors

The Healthy Lifestyle and Personal Control Questionnaire (HLPCQ) is a 26-item instrument used to assess the frequency of embracing positive lifestyle habits, which is indicative of health empowerment (Darviri et al., 2014). This scale has five dimensions: healthy dietary choices (seven items), dietary harm avoidance (four items), daily routine (eight items), organized physical exercise (two items), and social and mental balance (five items). The items of each subscale are rated on a 4-point Likert scale (1 = never or rarely, 2 = sometimes, 3 = often, and 4 = always), indicating the frequency of adopting healthy lifestyle habits. The questionnaire score is calculated by summing up all items. The validity and reliability of the scale were previously tested in the Greek language, which showed satisfactory results of between .63 and .75 (Darviri et al., 2014). In this study, the scale was translated and adapted and then pilot tested. Psychometric analysis was performed to assess the scale's construct validity and internal consistency.

Patient-centered care

The Patient Perception of Patient-Centeredness (PPPC) questionnaire is a 14-item instrument used to assess patient perceptions of their physician's patient centeredness (Stewart et al., 2000). Items are rated on a 4-point Likert scale. The scale has three subscales: exploring both the disease and illness experience (four items), finding common ground (nine items), and understanding the whole person (one item). The scores for the total scale and subscales are obtained by calculating the mean. The scale was previously tested, showing good evidence of total score reliability (α = .71; Stewart et al., 2000). It has also been translated and used in different populations (Santiago & Coelho, 2021). In this study, the scale was translated and adapted and then pilot tested. Psychometric analysis was performed to assess the scale's construct validity and internal consistency.

Health-related quality of life

The WHO Quality of Life Brief (WHOQOL-BREF) is used to assess self-perceived quality of life (WHOQOL Group, 1998). The scale has 26 items with four domains: physical health (seven items), psychological health (six items), social relations (three items), and environment (eight items). In addition to the four domains, the scale includes two questions related to respondents' rated quality of and satisfaction with health. The scale is applicable cross-culturally and has been widely translated into different languages and used with different populations. The WHOQOL-BREF domains were calculated by multiplying the mean of each domain's items by four. Evidence of excellent psychometric properties of reliability and validity have been found for this measure (Kalfoss et al., 2008; Rivas et al., 2015), with internal consistency ranging from .66 to .84. The Arabic version of WHOQOL-BREF (Ohaeri & Awadalla, 2009) was used in this study. The internal consistency was .76 for the physical domain, .61 for the psychological health domain, .93 for the social relations domain, and .97 for the environmental domain.

Ethical Considerations

The study was approved by the institutional review board (IRB) of both the Ministry of Health (IRB No. 20-07E) and King Saud University (IRB No. E-19-3718). After explaining the study procedure and purpose as well as the voluntary nature of the study, informed consent was obtained from each participant before data collection. Each participant was assigned a unique ID number to ensure data were anonymous and confidential.

Data Analysis

Data analysis was performed using IBM SPSS Statistics Version 28 (IBM, Inc., Armonk, NY, USA) and Mplus Version 8.6 (Muthén & Muthén, Los Angeles, CA, USA). Missing data were assessed and found to range between 0.4% and 3.2%, so missing data were replaced with the sample mean. Descriptive statistics were used to describe the study participants. Then, the psychometric properties of the newly translated scales were assessed. Factor analysis was conducted to assess the construct validity of the scales (AAHLS, HLPCQ, and PPPC) and determine their subscales. Various indices were used to determine whether the scales' structures adequately fit the data. The fit indices were root mean square error of approximation (RMSEA), standardized root-mean-square residual (SRMR), comparative fit index (CFI), Tucker–Lewis index (TLI), and chi-squared test. Internal consistency reliability for each scale was assessed based on Cronbach's alpha.

After confirming the factor structure of the scales, descriptive statistics were computed for each variable. Next, SEM was conducted to test the hypothesized model simultaneously while controlling for participant age and education. All of the variables were latent variables. The distribution of each variable was checked based on skewness and kurtosis indices. All of the variables have skewness and kurtosis less than 2. Thus, the analysis was conducted using maximum likelihood estimation (Kline, 2015). In addition, fit indices were used to determine whether the model adequately fit the data. Standardized path coefficients (β) were reported to compare the strength of paths within the models, whereas unstandardized coefficients (B) were used to compare the strength of paths across the models (Kline, 2015).

Results Characteristics of the Study Participants

The characteristics of the sample are shown in Table 1. The mean age of participants was 47.5 years (range: 18–65 years, SD = 11.9), and most were married (57.7%, n = 173). Regarding education, 4.3% (n = 13) could not read and write and 26.3% (n = 79) had completed a postsecondary education. More than half (69.0%, n = 207) were unemployed (housewives). Their household income averaged SR 4,599.59 (range: 1,000–20,000, SD = 3,637.59). Regarding chronic disease diagnosis, 36.0% (n = 108) had been diagnosed with one NCD; 38.7% (n = 116), with two NCDs; 16% (n = 48), with three NCDs; 5.7% (n = 17), with four NCDs; and 3.6% (n = 11), with more than four NCDs. Regarding healthcare delivery usage during the last 12 months, 30.7% (n = 92) had been admitted to the hospital once, whereas 6.3% (n = 19) had been admitted more than twice. Furthermore, 27% (n = 81) had visited the emergency department once; and 19.9% (n = 60), more than twice. In terms of weight, 27% (n = 81) were of normal weight, 37% (n = 111) were overweight, and 14.7% (n = 44) were obese.

Table 1. - Characteristics of the Participants (N = 300) Characteristic M (SD) Range Age (years) 47.5 (11.9) 18–65 Household income (SR) 4,599.59 (3,637.59) 1,000–20,000 n % Employment status  Employed 23 7.7  Not employed 207 69.0  Retired 70 23.3 Marital status  Single 36 12.0  Widowed 66 22.0  Divorced 25 8.3  Married 173 57.7 Educational status  Unable to read and write 13 4.3  Primary education 55 18.3  Intermediate education 62 20.7  High school 91 30.3  Postsecondary education 79 26.3 Chronic disease diagnosis status  One chronic disease 108 36.0  Two chronic diseases 116 38.7  Three chronic diseases 48 16.0  Four chronic diseases 17 5.7  More than four chronic  diseases 11 3.6
Psychometric Analysis of the Translated Scales

For AAHLS, confirmatory factor analysis (CFA) was performed to assess construct validity. The fit indices showed a good fit with the original four factors (functional, communicative, critical, and empowerment). The fit indices were χ2(58, N = 300) = 205.104, CFI = .964, TLI = .952, RMSEA = .092 (90% CI [0.078, .0106]), and SRMR = .031, which supported construct validity. Internal consistency was .96 for the functional health literacy subscale, .94 for the communicative health literacy subscale, .90 for the critical health literacy subscale, and .64 for empowerment subscale. For HLPCQ, CFA was performed, with the results indicating a good fit with the original five factors (healthy dietary choices, dietary harm avoidance, daily routine, organized physical exercise, and social and mental balance). The fit indices were χ2(289, N = 300) = 988.810, CFI = .926, TLI = .917, RMSEA = .090 (90% CI [0.084, 0.096]), and SRMR = .035, supporting the construct validity. The internal consistency was .96 for healthy dietary choices, .83 for dietary harm avoidance, .95 for daily routine, .89 for organized physical exercise, and .96 for social and mental balance. For PPPC, CFA showed a poor fit with the original three factors (exploring both the disease and illness experience, finding common ground, and understanding the whole person). Thus, explanatory factor analysis was conducted using oblique rotation of GEOMIN. The best-fitting model had two factors (CFI = .965, TLI = .950, RMSEA = .074 (90% CI [0.061, 0.088]), SRMR = .015), including the exploring the disease and illness experience subscale and the common ground subscale, in which Item 14 loaded on the second factor. Internal consistency was .96 for the exploring both the disease and illness experience subscale and .98 for the finding common ground subscale.

Study Variables

The descriptive statistics for the study variables are shown in Table 2. The mean score was 22.03 for total health literacy (range: 11–35, SD = 8.1), 8.64 for the functional health literacy subscale (range: 4–12, SD = 3.27), 6.04 for the communicative health literacy subscale (range: 3–9, SD = 2.49), 7.36 for the critical health literacy subscale (range: 4–16, SD = 3.15), and 0.44 for the empowerment subscale (range: 0–2, SD = 0.74). In terms of functional health literacy, 49.3% of the participants “rarely” needed help and 41.7% “often” received the help they needed. In terms of communicative health literacy, 41.7% of the participants were “often” sure about understanding information from healthcare providers. In terms of critical health literacy, 52.3% of the participants did not really question their healthcare providers' advice. In terms of empowerment, 79.3% of the participants had not taken any action during the last year with regard to health issues related to family or the community. The average total score for lifestyle behavior was 54.30 (range: 26–104, SD = 22.73), with a dietary healthy choices subscale score of 13.93 (range: 7–29, SD = 6.80), a dietary harm avoidance subscale score of 9.03 (range: 4–16, SD = 3.93), a daily routine subscale score of 17.18 (range: 8–32, SD = 7.05), an organized physical exercise subscale score of 3.50 (range: 2–8, SD = 1.75), and a social and mental balance subscale score of 10.66 (range: 5–20, SD = 5.06). The average scores were 2.87 for the patient-centered care subscale (range: 1–4, SD = 1.01), 2.91 for the patients' perception that their illness experience has been explored subscale (range: 1–4, SD = 0.98), and 2.85 for the patients' perception that the patient and doctor had found common ground subscale (range: 1–4, SD = 1.05). The total score for quality of life averaged 11.75 in the physical domain (range: 4–20, SD = 3.36), 11.81 in the psychological domain (range: 4–20, SD = 3.73), 11.49 in the social relationships domain (range: 4–20, SD = 4.63), and 11.76 in the environment domain (range: 4–20, SD = 4.27).

Table 2. - Descriptive Statistics of Study Variables Variable Mean SD Range Skewness Kurtosis Total health literacy 22.03 8.10 11–35 −0.009 −1.471  Functional health literacy 8.64 3.27 4–12 −0.256 −1.580  Communicative health literacy 6.04 2.49 3–9 −0.032 −1.653  Critical health literacy 7.36 3.15 4–16 0.489 −1.022  Empowerment 0.44 0.74 0–2 1.320 .105 Total score for patient-centered care 2.87 1.01 1–4 −0.341 −1.282  Exploring both the disease and illness experience 2.91 0.98 1–4 −0.397 −1.090  Finding common ground 2.85 1.05 1–4 −0.346 −1.351 Quality of life  Physical health 11.75 3.36 4–20 0.059 .157  Psychological health 11.81 3.73 4–20 −0.066 −.496  Social relations 11.49 4.63 4–20 −1.260 −1.062  Environment 11.76 4.27 4–20 −0.098 −.976 Total score of the Healthy Lifestyle and Personal Control Questionnaire 54.30 22.73 26–104 0.638 −.844  Dietary healthy choices 13.93 6.79 7–29 0.744 −.843  Dietary harm avoidance 9.03 3.93 4–16 0.323 −1.124  Daily routine 17.18 7.04 8–32 0.563 −.821  Organized physical exercise 3.50 1.75 2–8 0.992 .068  Social and mental balance 10.66 5.05 5–20 0.419 −1.188

Controlling for participant education and age, SEM was conducted to assess the hypothesized model, with all variables treated as latent variables. Health literacy has four indicators (functional, communicative, critical, and empowerment), lifestyle behavior has five (dietary healthy choices, dietary harm avoidance, daily routine, organized physical exercise, and social and mental balance), patient-centered care has two (exploring both the disease and illness experience and finding common ground), and quality of life has four (physical health, psychological health, social relations, and environment). The model was found to adequately fit the data: χ2(107, N = 300) = 283.767, CFI = .964, TLI = 0.954, RMSEA = .074 (90% CI [0.064, 0.085]), and SRMR = .043. For all of the latent measures, the standardized loadings for factors were significant and ranged between .379 and .978. Health literacy was shown to positively and directly affect both patient-centered care (β = .614, B = 0.189, p < .001) and healthy lifestyle behaviors (β = .550, B = 1.211, p < .001). Moreover, both patient-centered care (β = .390, B = 1.301, p < .001) and healthy lifestyle behaviors (β = .322, B = 0.150, p < .001) were shown to positively and directly affect quality of life. Furthermore, health literacy was shown to have significant direct (β = .285, B = 0.292, p < .001) and indirect (β = .417, B = 0.428, p < .001) effects on quality of life. These findings support patient-centered care and healthy lifestyle behaviors as partially mediating the relationship between health literacy and quality of life. The standardized (β) regression coefficients for each path are shown in Figure 2.

F2Figure 2.:

Structural Equation Model With Standardized Path Coefficients

Discussion

The results of this study contribute to the existing body of knowledge by focusing exclusively on women, reflecting that gender roles and expectations likely shape self-perceived HRQOL. This study showed that the overall hypothesized model fits with the data, suggesting its significance in the context of NCDs affecting women. Patient-centered care and healthy lifestyle mediate the relationships between the health literacy dimensions and HRQOL. The findings support the importance of considering different levels of health literacy skills, including levels of autonomy and empowerment, in medical decision making in women with chronic diseases.

The findings of a mean total health literacy score of 22.03 of 35, functional health literacy score of 8.64 of 12, communicative health literacy score of 6.04 of 9, critical health literacy score of 6.89 of 12, and empowerment score of 0.44 of 2 indicate that the participants had a relatively lower average level of health literacy than those in previous studies (X. Chen et al., 2021). However, in light of the adaption process and one item removed from consideration in this study, this comparison with previous studies may not be accurate. This study only included women, who may have a lower health literacy level than men (F. Zhang et al., 2021). Nevertheless, some studies found women had a higher health literacy level than men (H. Y. Lee et al., 2015). The lowest score in this study was for critical health literacy, which is considered the highest order of health literacy needed to appraise health information at the critical level (Sykes et al., 2013). Generally, health literacy is important for women with chronic diseases, as these skills help the individual adhere to medications and follow up with healthcare providers regularly (Karasneh et al., 2020).

In this study, the mean scores for quality of life in the physical, psychological, and social relationships and environmental dimensions were low compared with those in other studies (Strømme et al., 2020), indicating low HRQOL and highlighting the need to focus additional attention on Saudi women with NCDs. This study also supported the direct and indirect effects of health literacy on HRQOL. Given the chronicity of NCDs and the high incidence of comorbidities, these diseases have the potential to worsen patients' overall health, restrict their functional status and productivity, and limit their ability to achieve well-being. In this context, HRQOL may be considered as an indicator of best clinical practices (Megari, 2013). Thus, showing the influence of health literacy dimensions on HRQOL is an important finding that is consistent with the findings of some other studies (Ehmann et al., 2020) and inconsistent with others that found no association between health literacy and HRQOL (Couture et al., 2017). A possible explanation for these differences is that previous studies used different measurements, with some studies measuring the functional dimension of health literacy only (Couture et al., 2017). The findings of this study highlight the importance of all health literacy dimensions, including communicative, critical, and empowerment.

In addition, the findings of this study showed that receiving patient-centered care mediates the relationship between health literacy and HRQOL. This may be explained by health literacy being a dynamic concept that influences the interactions between patients and healthcare providers. Furthermore, promoting health literacy by increasing patients' literacy, communicative, and critical skills may enhance patient-centered care, which in turn can increase quality of life. To our knowledge, previous studies have not examined the mediating role of patient-centered care in the relationship between

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