Impact of Health Literacy on Patient-Reported Outcomes in Benign Gynecology: A Systematic Review.

Health literacy has been defined as “the extent to which individuals have the capacity to obtain, process, and understand basic health information that is needed to make appropriate health decisions” [ 1 ]. Poor or inadequate health literacy has been linked to negative patient outcomes such as inferior disease-specific knowledge [ 2 ], reduced self-reported health [ 3 ], increased hospitalizations and readmissions [ 4 , 5 ], and higher mortality in older adults [ 6 ]. Low levels of health literacy are more prevalent in minority populations, including persons for whom English is not their first language, people with low levels of income and education, people with compromised health status, and elderly communities [ 7 ]. Given the significant burden of inadequate health literacy on the health of people, especially within marginalized populations, it is imperative that healthcare providers are aware of the direct health implications, and patient-centered outcomes within specific clinical contexts. Patient-reported outcomes reflect the status of a patient’s health condition and are obtained from the independent perspective of a patient [ 8 ]. Patient-reported outcomes measures are a unique and high-quality patient-centered evaluation tool, as they are derived from a patient’s beliefs regarding their individual health status and needs without secondary interpretation from others. The management of benign gynecologic disorders, such as abnormal uterine bleeding, fibroids, endometriosis, and pelvic organ prolapse, often requires advanced health literacy skills. This is due to the importance of understanding relevant anatomy and clinical presentations, recognizing the severity of associated symptoms, managing medication regimens, and comprehending the available treatment options, both medical and surgical. For example, the inability to understand the nuanced instructions involving medication dosing or pre-operative directions can result in compromised patient safety. In this way, low health literacy can negatively impact the delivery of equitable patient-centered care in gynecology. While some studies have looked at the general impact of health literacy on health outcomes, most notably the work by Berkman and colleagues [ 7 ], and at least one systematic review has considered the role of health literacy in the reproductive health of women [ 9 ], we hypothesized there is a paucity of work specifically focusing on patients seeking treatment for benign gynecologic conditions. We aimed to systematically review existing data regarding health literacy and patient-driven health outcomes in this population, with the primary objective of evaluating the relationship between health literacy and patient-reported outcomes in patients with benign gynecologic conditions. Secondarily, we also sought to determine the current reported prevalence of inadequate health literacy in patients with benign gynecological conditions, examine patient and demographic characteristics that may be significantly associated with low health literacy in this population, and collate designs and results of any interventions described in the literature which reduced literacy-related disparities in this population.

Methods The study protocol was registered with the International Prospective Register of Systematic Reviews (PROSPERO) (registration number: CRD42021261924) on July 30, 2021. Sources MEDLINE (Medical Literature Analysis and Retrieval System Online), Embase, The Cochrane Library (Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials (CENTRAL), Cochrane Methodology Register), Web of Science, PubMed (for items not on MEDLINE), and clinicaltrials.gov databases were searched on July 12, 2021, and again on October 13, 2023, for terms related to health literacy, specific health literacy measures, and benign gynecologic conditions (abnormal uterine bleeding, endometriosis, uterine fibroids, benign ovarian masses, and pelvic organ prolapse). Specific search strategies and search terms are detailed in the Appendices. These were developed in keeping with strategies used in other systematic reviews on these topics [ 7 , 10 - 14 ]. There were no language or publication period restrictions. Study Selection Articles were assessed for inclusion based on the following criteria: (i) population of adult women over the age of 18 with benign gynecologic conditions, (ii) use of validated tools to quantitatively measure health literacy and patient-reported outcomes, (iii) evidence of analyzing and reporting associations between health literacy and patient-reported outcomes, (iv) peer-reviewed primary literature. For the purpose of this review, benign gynecologic disorders were defined as: abnormal uterine bleeding, uterine fibroids, endometriosis and menstrual disorders, benign ovarian masses, and pelvic organ prolapse. There were no restrictions on the number of participants, study setting (primary, secondary, or tertiary care), country, or length of follow-up. Studies of any design, except for case reports, were considered for inclusion. Studies were also excluded from the review if they were non-peer-reviewed, grey literature, or not considered primary research, and if the prevalence of adequate and inadequate health literacy in their study sample was not reported or discernable from the study. Study selection occurred as a three-stage screening process using Covidence software (Melbourne, Australia); this included a title screen, an abstract screen, and a full-text review. First, a review of titles was conducted to remove any ineligible studies. Following this, an abstract screen and subsequent full-text review for the remaining articles were undertaken by two independent reviewers (AS, ES). Reviewers were blinded to one another’s decisions during the abstract and full-text screen; any disagreements regarding the inclusion of an article were resolved by a third reviewer (EM). Prior to the study selection process, all reviewers completed a pilot screen with 10 articles to ensure a full and clear understanding of the inclusion and exclusion criteria. Results Figure 1 shows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow chart detailing the selection process. Overall, after the removal of duplicates, 18,560 articles were returned through the search. Another 141 studies were identified by searching Clinicaltrials.gov . Following the title review, 926 studies proceeded to the abstract review with 25 studies being selected for full-text review. None of the 25 articles fulfilled the inclusion criteria, and thus, could not be included in the review. Given this, manual reference mining was not conducted as there were zero included articles. Reasons for exclusion included: wrong publication type (non-peer reviewed, conference abstracts), lack of validated health literacy measures, and wrong study outcomes. PRISMA: Preferred Reporting Items for Systematic Reviews and Meta-Analyses; HL: health literacy; PRO: patient-reported outcome Discussion Although existing literature was broadly searched over many databases, we did not find any existing studies that investigated the role of health literacy and its impact on patient-reported outcomes among patients with benign gynecologic conditions. Of the studies that were included in the full-text review, those relating to health literacy, patient-reported measures, and knowledge have been summarized in Table 1 [ 15 - 33 ], including major findings, and reasons for exclusion in order to highlight what the current state of published literature is in this domain. TOFHLA: Test of Functional Health Literacy in Adults; HL: health literacy; PRO: patient-reported outcome; REALM-R: Rapid Estimate of Adult Literacy in Medicine – Revised Specifically, three recurrent themes emerged during the full-text review: (i) Studies that investigated the relationship between health literacy and knowledge of benign gynecologic conditions in specific populations, (ii) Studies describing the impact of knowledge and/or health literacy on patient satisfaction and patient experience, as opposed to patient-reported outcomes, and (iii) Studies that explored the relationship between patient-reported outcomes and knowledge. Although numerous studies on benign gynecologic conditions briefly mention health literacy with regard to patient outcomes or experiences, it was evident while conducting our full-text review that health literacy has only been superficially explored in this population, and has not been included as an important predictor and often not measured using validated tools. Despite being mentioned in studies, it was often not reported and was simply said to have been measured as a way of minimizing experimental- or cohort-group differences. Of those that did measure health literacy, there was an acknowledgment of its importance but a failure to proceed with meaningful reporting or analysis. We noted that patient knowledge, regarding specific benign gynecologic conditions was used in many studies as an independent variable, as opposed to health literacy, with regards to impact on patient outcomes. Moreover, some of these studies found that health literacy did not correlate to specific disease knowledge or to patient satisfaction [ 15 - 17 ] (Table 1 ). These results draw attention to the importance of understanding whether knowledge or health literacy is a more effective tool in improving patient outcomes. Health literacy has been found to be independently related to disease knowledge of many chronic diseases, including asthma, diabetes, congestive heart failure, and hypertension [ 18 ], and thus, often these two factors have congruent effects on outcomes. However, while disease-specific knowledge can play an important role in impacting patient outcomes, the ability to apply and learn this knowledge is a unique function of health literacy [ 1 , 19 ]. A study by Stellefson and colleagues showed that in chronic obstructive pulmonary disease (COPD) patients, health literacy is positively associated with both generic as well as lung-specific health-related quality of life, whereas higher COPD knowledge was associated with lower lung-specific quality of life [ 20 ], which suggests that knowledge and health literacy may not be easily equated, and as such health literacy may be a better tool to predict and impact patient-reported outcomes. Additionally, some studies investigated patient-reported experience as a dependent measure instead of patient-reported outcomes. Even though both provide useful patient-directed information, it is important to distinguish between patient-reported experience and patient-reported outcomes. Patient-reported experience measures are reports of patient satisfaction and attitudes towards the healthcare service they are receiving [ 21 ]. They focus on a person’s general customer service experience in a healthcare setting; these can provide insight into patient safety and be used to monitor feedback but are not disease-specific. On the other hand, patient-reported outcomes can provide insight into the effectiveness of care, which may be illness-specific, from a patient’s perspective. Since our review was focused on the impact of health literacy in the context of the complex management of benign gynecological conditions, outcome-specific, rather than experience-based patient reporting tools are more useful. Overall, the broader literature suggests that higher health literacy may be associated with better health outcomes, as systematic reviews have examined these relationships in patients with chronic kidney disease [ 10 ], hypertension [ 22 ], type 2 diabetes [ 23 ], and reproductive health and pregnancy [ 9 ]. However, studies investigating the role of health literacy and its impact in regards to patient-reported outcomes is limited and sparse. There is some evidence in other populations to suggest that higher health literacy has been associated with improved patient-reported outcomes. In COPD patients, high health literacy is related to better health-related quality of life [ 20 ]. Similarly, limited health literacy is associated with worse patient-reported outcomes, specifically lower ratings of subjective health, and depression, in patients with inflammatory bowel disease [ 24 ]. A recent 2021 study in patients with systemic lupus erythematous also found that limited health literacy is associated with worse patient-reported outcome scores, even after controlling for disease severity and damage [ 25 ]. Most of this body of work exists in populations with chronic diseases requiring lifelong medical treatment; however, one study in orthopedic surgery patients showed that patient-reported outcomes of physical function were associated with health literacy, previous surgical intervention, and socio-economic factors (age, education, education, employment) were less reliant on health literacy, based on regression analysis, as compared to the other factors [ 26 ]. These data may be more contextually relevant and translatable to our population of interest because patients with benign gynecologic disorders can often be presented with medical and surgical management options. Here, decision-making with regards to preparation for, and success of surgical interventions could be dependent on a patient’s health literacy. Thus, it is imperative to know what relationship exists between health literacy and patient-reported outcomes in patients with benign gynecological conditions, in order to understand and integrate meaningful interventions that can positively impact patient outcomes and safety. A strength of our study is that we conducted an extensive and comprehensive literature search spanning more than 18,000 unique texts. Moreover, we were able to identify that current literature does not address the impact of health literacy on patient-reported outcomes in populations with benign gynecologic conditions. Unfortunately, since the results of our systematic review did not result in any studies that met our inclusion criteria, we were unable to address our primary and secondary objectives. Thus, we are unable to report on the relationship of health literacy and patient-reported outcomes in patients with benign gynecologic conditions, to determine the current reported prevalence of inadequate health literacy or examine demographic characteristics associated with low health literacy in this population. The authors would recommend that future studies examining patient-reported outcomes in gynecology should consider including an assessment of health literacy as part of the collected demographic information in order to be able to make robust conclusions about the impact of low health literacy on the ability of patients to complete these questionnaires as well as its impact on outcomes.

This review sheds light on the gaps in the existing literature regarding the role of health literacy and its impact on patient-reported outcomes among individuals with benign gynecological conditions. Despite a comprehensive search across multiple databases, we found no published studies specifically addressing this crucial intersection. Through our review, several recurring themes emerged, highlighting the need for further investigation. While some studies explored the relationship between health literacy and knowledge of benign gynecological conditions, others focused on patient satisfaction and experience rather than patient-reported outcomes. This differentiation underscores the importance of utilizing outcome-specific measures in understanding the true impact of health literacy in this context. Future research examining this relationship will help guide the delivery of equitable, patient-centered care in this population.