Health Literacy
The role of health literacy in perceived information provision and satisfaction among women with ovarian tumors: A study from the population-based PROFILES registry

https://doi.org/10.1016/j.pec.2014.03.008Get rights and content

Abstract

Objective

To assess the association of subjective health literacy (HL) and education with perceived information provision and satisfaction.

Methods

Women (N = 548) diagnosed with an ovarian or borderline ovarian tumor between 2000 and 2010, registered in the Eindhoven Cancer Registry, received a questionnaire including subjective HL, educational level, perceived information provision, and satisfaction with the information received. Multiple linear and logistic regression analyses were performed, controlled for potential confounders.

Results

Fifty percent of the women responded (N = 275). Thirteen percent had low and 41% had medium subjective HL. Women with low HL reported less perceived information provision about medical tests, and were less satisfied with the information received compared to women with high HL. Low educated women reported that they received more information about their disease compared to highly educated women.

Conclusion

Low subjective HL among women with ovarian tumors is associated with less perceived information provision about medical tests and lower information satisfaction, whereas low education is associated with more perceived information provision about the disease.

Practice implications

HL should not be overlooked as a contributing factor to patients’ perceived information provision and satisfaction. Health care providers may need training about recognizing low HL.

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.

References (64)

  • J.I. Arraras et al.

    An international validation study of the EORTC QLQ-INFO25 questionnaire: an instrument to assess the information given to cancer patients

    Eur J Cancer

    (2010)
  • D. Schillinger et al.

    Functional health literacy and the quality of physician–patient communication among diabetes patients

    Patient Educ Couns

    (2004)
  • D.W. Baker et al.

    Development of a brief test to measure functional health literacy

    Patient Educ Couns

    (1999)
  • P.A. Kelly et al.

    Physician overestimation of patient literacy: a potential source of health care disparities

    Patient Educ Couns

    (2007)
  • I. Mesters et al.

    Measuring information needs among cancer patients

    Patient Educ Couns

    (2001)
  • J.I. Arraras et al.

    EORTC QLQ-INFO26. A questionnaire to assess information given to cancer patients a preliminary analysis in eight countries

    Psychooncology

    (2007)
  • C. Meredith et al.

    Information needs of cancer patients in west Scotland: cross sectional survey of patients’ views

    Brit Med J

    (1996)
  • J.D. Harrison et al.

    What are the unmet supportive care needs of people with cancer? A systematic review

    Support Care Cancer

    (2009)
  • V. Jenkins et al.

    Information needs of patients with cancer: results from a large study in UK cancer centres

    Br J Cancer

    (2001)
  • M.E. Mills et al.

    The importance of information giving for patients newly diagnosed with cancer: a review of the literature

    J Clin Nurs

    (1999)
  • K. Abrahamson et al.

    Managing the unmet psychological and information needs of patients with cancer

    Patient Intell

    (2010)
  • K. Sørensen et al.

    Health literacy and public health: a systematic review and integration of definitions and models

    BMC Public Health

    (2012)
  • S.F. Garcia et al.

    Addressing low literacy and health literacy in clinical oncology practice

    J Support Oncol

    (2010)
  • A. Foltz et al.

    Get real: clinical testing of patients’ reading abilities

    Cancer Nurs

    (1998)
  • D.W. Baker et al.

    The health care experience of patients with low literacy

    Arch Fam Med

    (1996)
  • N.D. Berkman et al.

    Low health literacy and health outcomes: an updated systematic review

    Ann Intern Med

    (2011)
  • M.V. Williams et al.

    Inadequate functional health literacy among patients at two public hospitals

    J Amer Med Assoc

    (1995)
  • M.K. Paasche-Orlow et al.

    The prevalence of limited health literacy

    J Gen Intern Med

    (2005)
  • S.J. Shaw et al.

    The role of culture in health literacy and chronic disease screening and management

    J Immigr Minor Health

    (2009)
  • R.K. Matsuyama et al.

    Education level, not health literacy, associated with information needs for patients with cancer

    Patient Educ Couns

    (2011)
  • S.E. Lillie et al.

    Retention and use of breast cancer recurrence risk information from genomic tests: the role of health literacy

    Cancer Epidemiol Biomarkers Prev

    (2007)
  • K.F. Douma et al.

    Do patients’ information needs decrease over the course of radiotherapy

    Support Care Cancer

    (2012)
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