Assessment of health literacy in patients with polycystic ovary syndrome and its relationship with health behaviours: a cross-sectional study

Strengths and limitations of this study

This study is the first to explore the relationship between health literacy and health behaviours, while providing a comprehensive report on specific levels of health literacy and its influencing factors.

One of the limitations of this study is that it was a single-centre cross-sectional study.

Another limitation is the risk of bias because the data were self-reported.

Introduction

Polycystic ovary syndrome (PCOS) is a reproductive, endocrine and metabolic disorder that causes menstrual disorders, obesity, infertility and long-term complications in millions of reproductive-age women worldwide, with an estimated healthcare-related economic burden of $4.3 billion per year.1 2 Its prevalence ranges from 5% to 20%, and the average prevalence of PCOS in China is 10.01%.3 4

Lifestyle management is, as evidenced by guidelines, international position statements and Cochrane reviews, the recommended first-line treatment consisting of numerous health behaviours.5–7 It plays a key role in PCOS management and can effectively improve clinical symptoms, physiological metabolism and psychological characteristics of patients with PCOS.8 9 Therefore, exploring predictors and modifiers of health behaviours in patients with PCOS is the key to effective disease management and the prevention of adverse health outcomes. Adopting and maintaining lifestyle changes involves a complex behavioural change that requires multiple skills and resources on the part of the individual, which many patients find difficult to adhere to. Moreover, these individual and social resources in the self-management of health can be encompassed under health literacy.

Health literacy is defined as ‘the ability of an individual to obtain and translate knowledge and information to maintain and improve health in a way that is appropriate to the individual and system contexts’.10 The three main categories of health literacy are functional, interactive and critical.10 Functional health literacy is defined as having basic skills, sufficient to enable individuals to access relevant health information (eg, on health risks and on how to use the health system) and apply this knowledge to a range of prescribed activities.11 Individuals with these essential health literacy skills are often able to respond well to education and communication aimed at clearly defined goals and specific contexts, such as medication adherence, participation in prevention activities and some behavioural changes.11 Interactive health literacy refers to an individual’s ability to extract health information and apply new health information to changing circumstances and interact with others.11 Individuals with higher levels of these skills are better able to differentiate between different sources of information and respond to more interactive and accessible health communication and education through structured communication channels (eg, health education, mobile apps and interactive websites).11 Critical health literacy describes advanced literacy skills that can be applied to critically analyse information from a wide range of sources and relating to a greater range of health determinants. Individuals with these advanced skills can obtain and use information to exert greater control over life events and situations that have an impact on health. Application of these skills may include appraisal of information about personal health risks (eg, by engaging in organised advocacy/lobbying on social and environmental health issues).11 12 Insufficient health literacy can lead to adverse health outcomes such as an increased readmission rate, increased risk of death, poor self-care skills, poor medication adherence and low health-related quality of life.13–15 The additional medical costs of insufficient health literacy ranged from $11 785 528 to $15 432 239 in 2020.16 Furthermore, better health literacy is always associated with better health behaviours, better cognitive function, fewer depressive symptoms, fewer chronic diseases, better daily mobility and good physical condition.17 18

Previous literature demonstrates that the health literacy of patients influences their attitudes towards preventive counselling and their motivation to make healthy lifestyle choices.19 Several studies also have confirmed a direct and significant effect of health literacy on health behaviours in different populations.14 20 21 Among the characteristics of the patients with PCOS, the relationship between sufficient health literacy and poor health behaviour, and sufficient health literacy and health behaviour remains unclear. Thus far, there are have been two studies on PCOS health literacy.22 23 However, the relationship between health literacy and health behaviours was not explored. Moreover, these studies lacked comprehensive reporting on specific levels of health literacy and its influencing factors.

Therefore, in the context of improving health literacy in patients with chronic diseases, further confirmation of whether the optimal management strategy for PCOS correlates with improved health literacy of patients is necessary.24 25 The purpose of this study was to explore the current state of health literacy and health behaviours in individuals with PCOS and assess the relationship between the two to add to the research and practice of PCOS management.

MethodsStudy design and patients

This was a cross-sectional observational study in which patients with PCOS were recruited from the gynaecology outpatient department of the Affiliated Hospital of Zunyi Medical University in Zunyi City, Guizhou Province in a convenience sampling manner. This study was carried out from March 2022 to June 2022. The inclusion criteria for this study included patients: aged≥18 years; who meet the Rotterdam diagnostic criteria; able to self-report and able to give informed consent. The exclusion criteria included patients: with mental illness; unable to complete self-reporting independently; with cognitive or other impairment, such as visual impairment and unwilling to participate in this study.

Sample size

The sample size was calculated using events per variable (EPV), with p representing the prevalence of PCOS and K representing the number of predictors. Based on the above assumptions and the formula n=EPV × K / p (K=4, p=0.15), only an EPV of 10 or above was considered robust. Based on the above formula, the required sample size was calculated as 267, which was increased by 10% to a sample size of 294, taking invalid questionnaires into consideration. Ultimately, 300 questionnaires were distributed and 293 were returned. After excluding the unqualified questionnaires, 286 valid questionnaires were included in this study, with an efficiency rate of 97.6%. The following were considered unqualified questionnaires: the questionnaire was incomplete (eg, missing pages or multiple pages, large areas of non-response, too many missing answers: more than 2/3 of the total number of questions); the options ticked in the questionnaire were all the same or in a regular pattern,(eg, 1, 2, 3, 1, 2, 3, 1, 2, 3); or the single choice questions were answered with two or more options.

Instruments and procedureProcedure

Recruitment and data collection was performed at a tertiary care hospital in Guizhou Province. The researcher identified patients on the day of diagnosis with PCOS by clinicians through the clinical outpatient clinic. Once the inclusion criteria were met, a trained researcher approached the patient and explained the purpose and process of the study to the patient prior to the survey. Another researcher briefed the patient on the purpose and nature of the study and the survey procedures. The patients’ informed consent was obtained after assurance was given that the data collected would be kept confidential, and the patients signed their names after they had given their consent. Participants are also informed that they could stop participation at any time without penalty. The questionnaire was completed in a private room in the hospital.

Demographic

Data were collected using a self-administered questionnaire that included sociodemographic data (including age, nationality, registered residence and marital status). Height, weight and waist circumference were measured by medical staff using professional tools.

Health Literacy Management Scale

Based on the Health Literacy Management Scale (HeLMS) compiled by Professor Jordan of University of Melbourne, Australia, a health literacy measurement tool for patients with chronic disease was improved in line with the Chinese cultural environment by Jordan et al.26 It included four dimensions, including information acquisition ability (nine items), communication and interaction ability (nine items), willingness to improve health (four items) and willingness to support economics (two items). The HeLMS items were scored using a five-point Likert scale with response options ranging from 1 (‘very difficult’) to 5 (‘not difficult at all’). Information acquisition ability was used to evaluate the connotation of functional health literacy; communication and interaction ability was used to evaluate interactive health literacy; willingness to improve health was consistent with the connotation of health concept in the questionnaire of Chinese residents’ health literacy; and willingness to support economics was used to evaluate patients’ intention to improve health and economic investment in disease management.27 The total score of the scale was 120 points, with a higher score demonstrating a higher level of health literacy. A score of more than 80% (>96 points) on the survey scale was considered as having sufficient health literacy. Cronbach’s α coefficients for each dimension of the scale ranged from 0.885 to 0.925.28

Health Promoting Lifestyle Profile

Furthermore, we used the Chinese version of the Health Promoting Lifestyle Profile (HPLP-II) to measure health behaviours, which was first developed by Walker et al.29 It measures health behaviours by focusing on self-initiated actions and perceptions that serve to maintain or enhance the level of wellness, self-actualisation and fulfilment of the individual. The HPLP-II is an instrument with 52 items among six health-promoting lifestyle subscales: health responsibility (HR, nine items), nutrition (N, nine items), stress management (SM, eight items), physical activity (PA, eight items), interpersonal relationships (IR, nine items) and spiritual growth (SG, nine items). All questions are scored on a four-point Likert scale: never (one point), sometimes (two points), often (three points) and always (four points). The total score is divided into four levels: 52 to 90 as poor, 91 to 129 as moderate, 130 to 168 as good and 169 to 208 as excellent.30 A total score of >129 was considered a positive response.31 Cronbach’s α=0.939, which is considered to be a measure of reliability, has been confirmed in a survey of Chinese people.32

Data analysis

Statistical analyses were performed using the Statistical Package for the Social Sciences (SPSS) software (V.20, SPSS, Chicago, IL, USA). Normally distributed data for continuous variables were analysed using means and SD. First, the researchers conducted univariate analyses to determine the association between predictor variables and health-promoting lifestyles of patients with PCOS. The univariate analysis consisted of two steps: (1) univariate analysis of sociodemographic characteristics via independent samples t-test, rank sum test and one-way analysis of variance; (2) assessment using Pearson’s correlation method. Second, we performed a multivariate logistic regression analysis using health literacy as the dependent variable and parameters that showed significant correlations in the univariate analysis as independent variables. Finally, the relationship between health literacy and health behaviours was assessed by using linear regression and conducting F-significance tests. A p value<0.05 was considered statistically significant.

Patient and public involvement

None.

ResultsDemographics characteristics

A total of 300 patients were given questionnaires to complete, and 293 were returned. After excluding the unqualified questionnaires, 286 effective questionnaires were included in this study. Of the 293 questionnaires returned, three were missing key variables, two were missing answers for more than two-thirds of the questions, and two had all the same options, resulting in the inclusion of a total of 286 questionnaires. The response rate was 97.7% and the effective rate was 97.6%. The characteristics of the patients were: age, 25.91±4.08 years; Body Mass Index (BMI), 25.22±5.38; waist circumference, 83.44±12.57 cm and duration of illness, 8±3.95 month. Most patients were of Han-nationality (86%); 49.7% and 50.3% of patients were living in urban and rural areas, respectively; and most of them were single (60.1%). For further details, see table 1.

Table 1

Characteristics of the study sample (n=286)

Health literacy

The health literacy levels of patients are shown in online supplemental figure 1 and table 2. More than half of the participants had insufficient health literacy (55.9%). Tables 3 and 4 show the impact of demographic characteristics on health literacy. Important factors affecting health literacy were age (β=0.154, p<0.05), BMI (β=−0.140, p<0.05), income (β=1.228, p<0.05), education level (β=1.552, p<0.05) and duration of illness (β=0.110, p<0.05). The following patient characteristics indicated higher health literacy: older age, higher income, longer duration of illness, lower BMI and higher education level.

Table 2

Health literacy among patients with PCOS

Table 3

Screening of independent variables by univariate analysis*†‡

Table 4

Logistic regression results of health literacy

Health behaviours

The health behaviours levels of the patients are shown in online supplemental figure 2 and table 5. Most participants did not meet the requirements, with 40.6% and 31.8% having poor and moderate health behaviours, respectively. Moreover, only 20.3% and 7.3% had good and excellent health behaviours, respectively.

Table 5

Levels of health behaviours in patients with PCOS

Association between health behaviours and health literacy

Health literacy was significantly positively correlated with health behaviours (r=0.473, p<0.01, online supplemental figure 3). The correlation coefficients for each dimension were health responsibility (r=0.233, p<0.01), nutrition (r=0.296, p<0.01), stress management (r=0.323, p<0.01), physical activity (r=0.483, p<0.01), interpersonal relationships (r=0.344, p<0.01) and spiritual growth (r=0.425, p<0.01); with physical activity being the most significant. Each parameter of health literacy and health behaviours was tested by F significance, and the difference was significant (p<0.05).

Discussion

Because PCOS requires long-term self-management, subjective factors such as health literacy and health behaviours may play an important role in the treatment and management of the condition. Therefore, this study explored the status of health literacy and health behaviour and their relationship in this population.

A total of 286 patients with PCOS were investigated in this study and the results showed that the mean age of the patients in this study was 25 years, indicating that patients with PCOS were younger overall, and of a similar age to those in other studies (mean age: 27/26.9).33 A previous study showed a high prevalence of obesity in patients with PCOS. In the current study, the mean BMI was >24 and the mean waist circumference was approximately 83.28, further confirming the high prevalence of obesity and abdominal obesity in patients with PCOS;34 which may be the result of multiple hormonal interactions.35 In our study, the number of patients living in urban areas was similar to that in rural areas; this was inconsistent with previous studies in which most patients (78.97%) resided in urban areas.36 This inconsistency is due to the studies being conducting in different locations.

In a previous study, 45% of patients with PCOS reported that they had never received information about lifestyle management,37 and the current study further supports the idea of most PCOS patients have never received disease-related knowledge education (56.6%). One possible reason for this is the lack of knowledge on PCOS management among physicians in China, the USA and Europe, as reported in several studies,38–41 which may have led to inadequate education of patients about the disease. Health education has a protective effect on functional health status transformation and is a key component of health. Previous studies have confirmed the effectiveness of health education in improving health outcomes and health behaviours.42 43 Moreover, several studies have shown that people who are able to use the internet to find health-related information and critically evaluate information make the best use of healthcare, and patients with PCOS primarily use the internet as a primary source of health information.44–46 In summary, comprehensive and accurate health behaviour information for patients with PCOS can be provided on the internet to enhance education about the disease.

Most importantly, this study showed that 55.9% of patients had insufficient health literacy. The results of this study are inconsistent with those of Al-Ruthia et al. Who reported only 16.5% (21/127) of patients with PCOS surveyed as having insufficient health literacy.22 The difference in results may be due to the different assessment tools used. Another possible reason is that most patients in the study by Al-Ruthia et al had been diagnosed with PCOS>4 years prior (68.6%), and our study had no cases with a disease duration postdiagnosis of >4 years. In the analysis of influencing factors of health literacy, we observed that the longer the duration of the disease, the better the patient’s health literacy. This is the first study to investigate the association between the duration of a chronic disease, postdiagnosis and health literacy, specifically in patients with PCOS. A possible explanation for this might be that the overall experience of living with a chronic illness can change over time, which may affect an individual’s self-management in terms of being proactive in understanding the chronic illness, taking ownership of their health needs and undertaking health promotion activities.47 Furthermore, a previous study reported that individuals with chronic conditions develop skills related to improving health literacy over time.48 Another important finding was that higher age was associated with higher health literacy, which differs from findings of studies on other chronic diseases (mean age=55.8 ± 11.3 years).49 One possible reason for this is that cognitive ability is critical to health literacy skills, and cognitive decline occurring between the ages of 45 and 49 leads to a decrease in health literacy with age in middle-aged and older adults with chronic conditions.50 51 Another study showed that adults aged 25–34 years had higher levels of health literacy than older adults (aged 65–69 years).52 Furthermore, women aged 15–44 years are of childbearing age, and the mean age in this study was 25.91±4.08 years.53 Therefore, PCOS mostly affects people of childbearing age who may gain higher health literacy with increasing age. As a conclusion, as PCOS is a condition that predominantly affects people of childbearing age, a higher health literacy is observed with increasing age. This study also showed that health literacy among patients with PCOS increases with education level and income, which is similar to the results in health literacy studies in other populations.54–56 This may be due to the following reasons. First, having access higher to education could improves one’s ability to read, analyse and judge information.57 Well-educated people are therefore more likely to acquire health-related knowledge and skills.57 Second, studies have shown that the low-income population was consistently less likely to use healthcare professionals as their first source for health information compared with the high-income population. Moreover, the low-income population is more likely to misunderstand information found on the internet, which is full of misleading information, that makes recognising accurate information a complex task.58 Therefore, the continued improvement of the health literacy of patients with PCOS is an important issue for future research, requiring a multisectoral, multilevel collaboration of interventions. For example, according to the view of Information-Motivation-Behavioural theory on health-related behavioural change, the first prerequisite for the implementation of health behaviour is to fully understand the behaviour through information, so that individuals have more motivation and confidence to formulate the focus behaviour to obtain greater health benefits.59 In turn, health literacy can be improved by promoting PCOS-related health knowledge educational tools, and providing health-related information to patients with PCOS because health literacy includes the patient’s ability to understand and adopt health-related information.24

The results of this study found that health behaviours were poor in patients with PCOS, with 72.4% of all patients needing to strengthen their health behaviours through making applicable dietary modifications, increasing physical activity and effective emotional adjustment, among others.60 Previous studies have also reported poor physical activity and eating behaviours in patients with PCOS.61 There are several possible explanations for this. First, studies have shown that depression can negatively affect the motivation needed for self-care. In patients with PCOS, there is a high prevalence of depression, which may trigger a vicious cycle in PCOS, further hindering patients’ efforts to improve their lifestyle habits, leading to worsening symptoms and metabolic decline. Future studies should therefore further explore the interaction between health behaviours and negative emotions in patients with PCOS.62 Second, the increased incidence of eating disorders in PCOS may be the result of an interaction of hormonal, psychological and metabolic influences.63 Third, self-reported lack of time and fatigue in patients with PCOS are deemed barriers to the ability to maintain physical activity and change health behaviours; these could further be influenced by other physical or physiological factors.64–66 Fourth, a study has shown that a lack of information and support for women with PCOS may influence patients’ low perceptions of the effectiveness of health behaviours, and thus influence their expectations and experiences of health behaviour efficacy.64 In summary, improving health literacy and health behaviours in patients with PCOS requires flexible intervention strategies, for example, by providing reliable disease-related information, giving multiple channels for resource acquisition, and providing adequate social support to manage multiple health conditions.67 In addition, health management strategies that improve health literacy may improve engagement with effective lifestyle behaviours and improve health outcomes for patients with PCOS.25 However, it is important to note that sustained health behaviour change is a challenging, and multifactorial lifestyle management can impose burdens, such as shame as a result of the illness and satisfaction with body image, which can worsen psychological complications such as depression and anxiety.68 69 Therefore, emotional support should be provided to the patients when implementing management strategies to improve health literacy with the aim of improving patients’ health behaviours.

This study also aimed to explore the relationship between health behaviours and health literacy in patients with PCOS. The results show that the two are positively correlated; thus, patients with higher health literacy have good health behaviours, and those with lower health literacy have bad health behaviours. This is consistent with the results of studies of other populations,70 71 but was demonstrated for the first time in patients with PCOS in this study. Although past studies have explored the impact of health literacy on BMI in patients with PCOS, other factors are also important because the treatment and management of PCOS requires synergistic multidimensional health behaviour changes.22 These results are most likely due to the role of health literacy as a facilitator of health behaviours. Health literacy mediates health behaviours and can have important direct and indirect positive effects on overall health.14 Therefore, medical staff should pay attention to the health literacy of this group of patients, formulate and maintain strategies to improve health literacy, and include health literacy as one of the important indicators of PCOS management.

One of the limitations of this study is that it was a single-centre cross-sectional study. Therefore, a multicentre longitudinal study is needed to further confirm the statistical data. Another limitation is the risk of bias due to data being self-reported.

Conclusion

This study shows that patients with PCOS had insufficient health literacy, and health behaviours need to be enhanced. Older age, higher income, longer duration of illness, lower BMI, and higher education level of patients were associated with higher health literacy. Notably, health literacy was positively correlated with health behaviours in patients with PCOS. Therefore, sufficient health literacy can help these patients improve health behaviours, which is necessary for them to be proactive in managing and treating the disease. In conclusion, health literacy should be an important part of the treatment and management of PCOS in future practice.

Data availability statement

Data are available upon reasonable request. The data set used during the current study is available from the corresponding author on reasonable request.

Ethics statementsPatient consent for publicationEthics approval

This study involves human participants. The research protocol was approved by the Institutional Ethical Review Board at the Affiliated Hospital of Zunyi Medical University. Written informed consent was obtained from all participants. Approval ID is KLLY-2021-125. Participants gave informed consent to participate in the study before taking part.

Acknowledgments

The authors acknowledge the women with PCOS who participated in the study.

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