A literature review to understand health literacy in men with prostate cancer on active surveillance

Introduction

Prostate cancer (PCa) is the second most frequently diagnosed cancer in men and the 4^th most frequent cancer overall. In 2020, 1.4 million cases were reported (1). In the UK, more than half of diagnoses are localised (cT1–T2, Grade Group 1–3) with generally good prognosis after treatment (2).

There are three main treatment options for men diagnosed with localised PCa: (I) surgery [i.e., radical prostatectomy (RP)]; (II) radiation, i.e., external beam radiation, brachytherapy (internal radiation) and radiation therapy; and (III) active surveillance (AS), i.e., active monitoring instead of immediate treatment. These different treatment options come with different side effects such as urinary incontinence, erectile dysfunction and bowel dysfunction (3). International guidelines recommend to use a shared decision making approach to identify the most suitable treatment approach for the individual patient (4). However, choosing monitoring (i.e., AS) over active treatment often seems to be a difficult choice for men with localised PCa, even though from an evidence-based medicine (EBM) perspective it is a safe option for localised PCa patients who meet certain criteria at the start of AS and during follow-up (4-7).

In 2018, Kinsella et al. identified in their mixed methods systematic review different factors that influence choice for and adherence to AS. These were found to be multifactorial and classified as: (I) patient characteristics; (II) tumour characteristics; (III) family and social support; (IV) provider; (V) healthcare organisation; and (VI) health policy. One of the highlighted facilitators in the “provider” theme was ‘Health literacy’, which can be described as an “individual’s capacity to access, understand, communicate, evaluate, utilize, and make decisions based on health information” (8). Kinsella et al. identified studies which highlighted health literacy (even though the studies itself did not specifically use the term or the concept “health literacy”) (9-12). Across the health care sector, the importance of health literacy in population health has been well-established, with poor health literacy associated with negative health outcomes, inadequate use of health services and increased occurrences of adverse events (13-15). In the AS setting, the education level of a patient has been described as particularly important to predict adherence (8).

We therefore aim to extend our understanding of health literacy by looking at whether there is any evidence on how studies report health literacy as an outcome in the AS population. And if such studies are published, are there any which report interventions targeting health literacy then? We aim to answer the following two research questions: (I) “Is there evidence that health literacy has an impact on choosing and adhering to AS for PCa patients?”; (II) “What interventions targeting health literacy are currently being implemented across PCa?”. We present our work in accordance with the Narrative Review reporting checklist (available at https://tau.amegroups.com/article/view/10.21037/tau-22-732/rc).

Methods

We performed a literature review in accordance with narrative review guidelines using the MEDLINE online database via PubMed (16) (Table 1). Firstly, we reviewed the current literature on men diagnosed with localised PCa who chose AS as a treatment in the context of health literacy. Secondly, we reviewed the literature on health literacy and PCa overall, to identify what lessons can be learned from other treatment settings.

These two searches and analyses were then combined to (I) identify how health literacy can be measured and (II) what interventions targeting health literacy (i.e., interventions which support patients in their treatment journey) support patients in treatment decision making and adherence to AS.

We used two searches to enable us to answer the two research questions.

Search strategy

Firstly, we used the search terms: “active surveillance” AND “health literacy”. The inclusion criteria for the first search were based on:

• Patients (male) aged older than 18 years diagnosed with a low grade PCa where AS can be proposed as a treatment option;
• English language;
• Quantitative papers where health literacy was assessed with a patient reported outcome measure (PROM) or quantitative survey;
• Qualitative papers where health literacy was explored for patients to access, understand, appraise information about AS to make decisions about choosing or adhering to AS.
• As part of our second literature search, we used the search terms: (“low health literacy” OR “mental health literacy” OR “literacy”) AND “prostate cancer”. We included papers which focused on:
• Men aged older than 18 years diagnosed with PCa;
• English language;
• Quantitative papers where health literacy was assessed with a PROM or quantitative survey;
• Qualitative papers where health literacy is explored for patients to access, understand, appraise information about treatment decision making.

For both searches, we excluded:

• Systematic reviews, narrative reviews, case reports, review papers, conference proceedings, opinion pieces, editorials, letters to the editor, dissertations/theses, book chapters, protocols.

The timeframe for the first search was from 2015 (year first manuscript on health literacy and AS was published) until August 2022 and from 1989 to August 2022 for the second search (see Figure 1 for details). One reviewer (KB) extracted data from the included studies which were checked for accuracy by a second reviewer (LDFV).

Figure 1 Flow diagram representing the selection process of studies via databases and registers. For clarity, the duplication of articles have been removed in the PRISMA table (1 article), however, 1 duplicate article is included in the description of the article for transparency.

Data extraction

Data on study characteristics (i.e., author, year, country study undertaken, setting, design, aims/objectives, health literacy measure used, outcomes) were collected. We furthermore highlighted the aims/objectives of the included studies, the health literacy measurement used and the primary outcome of the study.

Analysis

To enable us to better understand health literacy as an outcome, we wanted to understand how the included studies measured health literacy as a patient reported outcome (PRO). We then grouped those using a thematic analysis approach and highlighted the PROMs which have been used to assess the PROs. Finally, we report the interventions targeting health literacy which aim to improve health literacy across PCa.

Results

For the first search, we identified 10 studies focused on AS and PCa, of which five met our inclusion criteria; four after abstract and one after full text screening. For the second search, we identified 148 studies and included 56 for abstract text screening and ultimately included 17 studies which met our inclusion criteria. Combining these two searches then resulted in 18 unique eligible studies.

Most of the studies were observational studies, with two randomised controlled trials (RCTs), one mixed method and one qualitative study. The studies were conducted in Canada (n=2), Denmark (n=1), Germany (n=1), Sweden (n=1) and United States (n=13). The identified studies were looking at health literacy across stages (n=5), in the screening (n=3), diagnostic (n=5), AS (n=1), localised PCa (n=3), advanced PCa (n=1) and survivorship setting (n=1) (see Table 2).

PROs and PROMs linked to health literacy

We identified three themes linked to outcomes measured in papers assessing health literacy in men with PCa on AS: comprehension of information, decision making, quality of life (QoL) (see Table 2).

Comprehension of information of patients across PCa stages

Five studies were measuring outcomes linked to comprehension of information, such as comprehension of PCa knowledge and terms to identify additional support needs, comprehension of health-related situations within couples where one partner is on AS, and comprehension of information linked to sociodemographic factors (19,21,22,24,27). Joyce et al. identified lower prostate related knowledge in men with poor health literacy (19). Seaton et al. also found a positive association between level of education and health literacy (21). Wang et al. and Friedman et al. identified that lack of comprehension might be widespread across the PCa population and may have an impact on shared decision making as well as understanding the need of PCa screening (24,27).

Decision making across PCa stages

Four studies looked at outcomes linked to decision making (17,18,23,26). The studies assessed the association between health literacy and the likelihood of participating in prostate-specific antigen (PSA) screening, health literacy and the way people ask questions about treatment decision and health literacy and late presentation. All four studies identified that higher health literacy levels have a positive association with the likelihood of PSA screening and early diagnosis (17,18,23,26).

QoL across PCa stages

Two studies looked at health literacy and QoL, such as fear of progression linked to health literacy and overall health-related QoL and health literacy for men with localised PCa (20,25). Haack et al. identified that better QoL was statistically significantly associated with communication skills, knowledge of dealing with health problems, and knowledge of own physical condition (20). Song et al. concluded that higher health literacy levels were significantly associated with better mental well-being (25).

PROMs

Nine of the identified studies used validated health literacy measures such as: the 2016 Behavioural Risk Factor Surveillance System (BRFSS) (17,18), the Swedish Functional Health Literacy Scale (FHL) (28), the Swedish Communicative and Critical Health Literacy Scale (CCHL) (28), the revised Rapid Estimate of Adult Literacy in Medicine (REALM-R) (19,25,26,29), the Brief Health Literacy Screen (BHLS) (19), the Health Literacy Questionnaire (HLQ) (long and short form) (21,22) and the Cancer Message Literacy Test-Listening (CMLT-Listening) (23). However, two studies also used non-validated measures, such as self-developed surveys on PCa (20,24) (see Table 3 for details).

Interventions linked to health literacy

We identified interventions targeting health literacy across all stages of PCa; however, none were targeting men on AS.

Health literacy & screening setting

We reviewed one RCT aiming to understand if a simple information leaflet on screening options in PCa would encourage patients to talk to their doctor (i.e., primary outcome). Around 48.4% of participants in the intervention group reported discussing PCa during their appointment vs the control group were only 37.3% mentioned PCa. Therefore, Kripalani et al. suggested that handing out information leaflets about screening and overall PCa might increase PSA test orders as well as a discussion of PCa with the clinician (30).

Health literacy & diagnosis setting

Three studies looked at how to best support patients during diagnosis in their decision-making (29,31,32). One study used video presentations to educate men on their cancer pathology reports and diagnosis and evaluated whether there was a change of understanding of the diagnosis and therefore health literacy. Ninety-five percent of the participants found it helpful and agreed that the video increased their understanding (31). The second study evaluated knowledge, level of satisfaction, and treatment preferences of men after participation in a Compact Disc Read-Only Memory (CD-ROM) shared decision-making program which focused on educating patients regarding their PCa and health care knowledge. The REALM PROM was used to measure success. They concluded that two thirds of patients were able to select their preferred treatment option based on the intervention, however, lower health literacy scores also indicated that patients may have a lower understanding of the shared decision making program and therefore with this population it seemed less successful (29). The third study used a video-based education tool emphasising narrated animations to improve the understanding of key terms related to PCa such as urinary, bowel, and sexual function. Using the tool, Wang et al. saw improvements of the understanding of participants of the terminology used in PCa [i.e., incontinence (from 14% to 50%), rectum (from 27% to 45%), and impotence (from 58% to 84%)] (32).

Health literacy & localised PCa

One study introduced an app for symptom management for men with localised PCa scheduled for curative RT. They evaluated self-care ability and health literacy and used the FHL and the Communicative and Critical Health Literacy and Appraisal of Self-Care Agency (CCHL) tool. They reported improvement of the intervention group such as “ability to select information needed from a variety of information sources”, “ability to determine the information credible”, and “being able to plan and decide what to do to improve health” (28).

Health literacy across PCa stages

A Canadian qualitative study looked at men’s health literacy and consumer-oriented healthcare as well as the link with PCa support groups. They used an explorative approach in their qualitative study. They defined key findings of success of their study as patients’ ability to understand their rights, responsibility, to compare diverse health products and services in making decisions across the PCa journey (33).

Health literacy & survivorship

In the field of survivorship, one study looked at improving health literacy for survivors using a PCa survivorship website. They measured their outcomes using a 3-item PROM (described in Table 3). The study’s success was limited since education, income, health literacy, blunting style of coping, self-efficacy, and treatment type were not found to be associated with the intervention (34).

Discussion

Our mixed methods review identified that there is currently limited evidence on health literacy in the context of choosing and adhering to AS for men with localised PCa. However, health literacy seems to have an impact on screening, treatment decision making, late diagnosis and survivorship across stages of PCa, as identified in our study. Identified studies looked at decision making of patients, comprehension of information and QoL linked to health literacy and show the negative impact of low health literacy. None of the identified studies looked at interventions targeting health literacy for choosing and adhering to AS, which might be linked to the fact that most studies have been conducted in the US (n=13) and potentially lower the relevance of some of the studies in a global setting.

Validated health literacy measures are increasingly used to measure health literacy in the PCa population. Especially BRFSS, CCHL, FHL, REALM, HLQ are PROMs which are used. However, when interventions targeting health literacy are introduced, validated measurements are less used, with only two out of seven studies reporting on a health literacy PROM. Many different interventions targeting health literacy are proposed across PCa to support men in their treatment journey: websites, videos, graphics and apps seem to have a positive impact on health literacy of patients (28-34).

The increased importance of measuring health literacy is also shown in 2021 when Murphy et al. published the results of their RCT in favourable-risk PCa patients. The study looked at the impact of genomic tests on treatment decision making in a predominantly African population (i.e., ENACT trial). The goal of the RCT is not to understand health literacy, however it seems to have an important impact on their outcomes as one of the main indirect findings of the ENACT trial showed that men with low health literacy were less likely to choose AS compared to men with high health literacy (35).

Across cancer care, Holden et al. performed a mixed methods systematic review where they demonstrated the role and consequences of health literacy in an oncology setting. They concluded that treatment decision making is closely linked to health literacy, similarly as shown/we present here. Nevertheless, across cancer care there seems to be limited evidence to understand to which degree patients want to take a more active role in their decision making. In addition, it is not clear how to best guide patients on how to improve their comprehension of risks and benefits of treatments like for example AS. Nevertheless, across cancer care they show that outcomes are poorer for patients which experience difficulties with health literacy. Hence, they advise to improve efforts to facilitate understanding to support current and future patients to be more involved in their care (36).

One limitation of this review is that we only included studies which directly looked at health literacy, which for example made us exclude the ENACT trial (35). This decision was taken to focus the research on studies which outcome was directly linked to health literacy. In addition, we only looked at studies which assessed health literacy and not purely literacy as the concepts differ and standardised outcomes should be assessed.

Conclusions

Across the PCa patient journey, there is evidence on the importance of health literacy to guide men in their decision making. Health literacy plays an important role in enabling men to take an active part in their treatment journey. However, looking at AS in particular, there is currently limited evidence available whereas across PCa there are examples of interventions targeting health literacy available. To improve adherence to AS, we need to better support men in their treatment decision process and improve their disease understanding. This may in turn also improve AS adherence. Therefore, it is utterly important to further develop interventions targeting health literacy in the context of AS choice/adherence for men with localised PCa.

Acknowledgments

Funding: None.

Footnote

Reporting Checklist: The authors have completed the Narrative Review reporting checklist. Available at https://tau.amegroups.com/article/view/10.21037/tau-22-732/rc

Peer Review File: Available at https://tau.amegroups.com/article/view/10.21037/tau-22-732/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://tau.amegroups.com/article/view/10.21037/tau-22-732/coif). MJR serves as an unpaid Associate Editor-in-Chief of Translational Andrology and Urology from January 2020 to December 2023. The other authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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