Health LiteracyThe role of health literacy in perceived information provision and satisfaction among women with ovarian tumors: A study from the population-based PROFILES registry
Introduction
The provision of appropriate information is one of the most important aspects of the support for cancer survivors. Appropriate information provision, for example about the diagnosis, treatment, long-term effects, and care services, can result in informed decision making, improved treatment adherence, lower levels of distress, and higher satisfaction with care and information received [1], [2], [3], [4], [5], [6]. Nevertheless, adequate information provision remains a challenge in the field of cancer care. It has shown to be a common unmet need among cancer survivors in all phases of their disease [7]. Effective information provision requires an individualized approach that is tailored to the patient's needs, competences, limitations, and possible barriers to the use of health information [8]. Tailored information may lead to improved outcomes, such as better adjustment to treatment [9]. In general, patients want to be informed about their disease and its implications, regardless of whether this information is positive or negative [10], [11]. However, specific information needs may depend on many individualized factors, including education and health literacy [12], [13].
Health literacy (HL) entails people's knowledge and competences to access, understand, appraise, and apply health information [14]. After a cancer diagnosis, patients are often presented with complex medical information regarding their disease and treatment [15], [16]. Patients with low HL are at high risk of not being able to process the information they are provided. This puts them at risk for various negative outcomes, such as difficulty understanding the diagnosis and treatment recommendations, poorer adherence to medical advice, medication errors resulting from inability to read labels, and increased hospitalizations [17], [18], [19]. HL can be assessed using objective and subjective measures. Objective HL measures assess the individual's actual skills (e.g. reading and calculating), whereas subjective HL measures evaluate the individual's perceived skills (e.g. asking if he or she has difficulty understanding health information). Education is often thought of as a marker for HL. However, although HL and education are related to each other [20], they need to be understood as distinct concepts [21], [22].
Despite the increased recognition of the importance of both information provision and HL in cancer care, research on the role of HL in information provision to cancer patients is limited. Previous studies have examined the relation between breast cancer patients’ HL and information-processing styles and preferences [23], breast cancer patients’ HL levels compared to the level of written patient educational materials provided to them [24], and the relation between cancer patients’ HL and self-reported information needs [22], [25]. To our knowledge, however, no studies have focused on the relation of cancer survivors’ HL with perceived information provision and satisfaction with the information received.
The present paper describes an explanatory study focusing on the additional effect of HL over education on information provision in a population-based sample of Dutch women with ovarian cancer and borderline (low malignant potential) ovarian tumors (BOT). Cancer of the ovary is one of the most common gynecologic malignancies, whereas BOT are relatively uncommon. In the Netherlands, about 1300 cases of ovarian cancer and 150–200 cases of BOT are diagnosed annually [26], [27].
The main purpose of this study was to investigate the association between HL and perceived level of information provision and information satisfaction, controlling for educational level. In order to distinguish between the potentially different effects of HL and education, we also evaluated the association between educational level and perceived level of information provision and satisfaction. Given that patients with inadequate HL tend to be passive during physician–patient communication and ask few questions during consults [28], [29], we hypothesized that lower HL would be associated with less perceived information provision among women with ovarian tumors. In the limited time that physicians have with their patients, they may not be able to tailor the information according to their needs. We therefore hypothesized that lower HL would be associated with less satisfaction with the information received. Finally, based on previous research indicating that patients with lower educational levels generally feel less confident and are more likely to be passive in interactions with physicians [30], we hypothesized that lower education would also be associated with less perceived information provision and less satisfaction with the information received.
Section snippets
Setting and participants
This study is part of a population-based survey among women with ovarian cancer and BOT registered within the Eindhoven Cancer Registry (ECR). The ECR collects data of all individuals newly diagnosed with cancer in the southern part of the Netherlands [31]. All women diagnosed with ovarian cancer or BOT between January 1, 2000 and July 1, 2010 as registered within the ECR were eligible for participation (N = 1442; Fig. 1). Deceased patients were excluded by linking the ECR with the Central Bureau
Patient characteristics
Of the 348 ovarian cancer survivors and 200 BOT survivors who were sent a questionnaire, 191 (55%) ovarian cancer survivors and 84 (42%) BOT survivors returned a completed questionnaire (Fig. 1). The mean age of respondents was 62.8 years (range 27–91), and the mean time since diagnosis was 6.3 years (range 1.7–12.1). Respondents were more often diagnosed with ovarian cancer and less often with BOT (70% and 30%) compared to non-respondents (60% and 40%). Respondents were also more often treated
Discussion
In the present study, lower subjective HL was associated with less perceived information provision about medical tests and lower information satisfaction. Contrary to our hypothesis, low educational level was associated with more perceived information provision about the disease compared to high educational level. HL and educational level explained a relatively small amount of the variability in perceived information provision and information satisfaction.
Compared to women with high subjective
Role of funding source
The present study was supported with grant no. UVT 2010-4743 from the Dutch Cancer Society and an investment grant of the Netherlands Organization for Scientific Research (NWO #480-08-009), The Hague, the Netherlands. The funding source had no involvement in the study design, the collection, analysis, and interpretation of data, the writing of the manuscript, and the decision to submit the paper for publication.
Author's contributions
MV, NE, MF, MLE-B, MA, CV, and OH contributed to the concept and design of the study. MF and MLE-B provided advice on HL measurement. NE, KN, and CV contributed to the acquisition of the data. MV and NE analyzed the data and drafted the manuscript. All authors provided input into revisions of the manuscript and have approved the final manuscript.
Conflict of interest
None.
Acknowledgements
We would like to thank all patients and their doctors for their participation in the study. In addition, we want to thank the following hospitals for their cooperation: Amphia Hospital, Breda; Catharina Hospital, Eindhoven; St. Elisabeth Hospital, Tilburg; Jeroen Bosch Hospital, 's Hertogenbosch; TweeSteden Hospital, Tilburg.
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2022, Patient Education and CounselingCitation Excerpt :p. 3). Studies have shown that low health literacy is associated with less information satisfaction in women with ovarian cancers [18] and higher information needs in those with breast cancer [1,7]. However, health literacy cannot only be understood as a patient´s risk but rather as an asset to be built that may support more comprehensive options for self-management [19].
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