Patient Education
An investigation of the quality of breast cancer information provided on the internet by voluntary organisations in Great Britain

https://doi.org/10.1016/j.pec.2008.11.019Get rights and content

Abstract

Objective

Patients increasingly use the internet to source health information. Voluntary organisations offering information and support often provide such information on their websites. However, the internet is unregulated and information can be of poor quality. The aim of this study was to evaluate the quality of breast cancer information provided by 10 Great Britain (GB) voluntary organisations’ websites.

Methods

Quality of websites was evaluated using an investigator-designed appraisal tool based on European Commission (EC) quality criteria for health-related websites. Completeness and transparency of breast cancer information, and usability of websites, were appraised.

Results

Typically, breast cancer-specific organisations provided the highest quality information, particularly in terms of its completeness. However, great variability in quality was identified. Areas of weakness related to transparency of information, in particular disclosure of authorship, and its apparent currency.

Conclusion

Voluntary organisations providing web-based breast cancer information have progress to make to ensure information provided is complete and transparent, and websites are user-friendly. Unfortunately, informed decision-making will not be optimised if patients cannot access quality information.

Practice implications

Voluntary organisations should regularly review the quality of information on their websites. Grading of websites allows healthcare professionals to identify and signpost patients to trustworthy, up-to-date websites. Thus, ensuring patients receive high quality information.

Introduction

The information needs of women with breast cancer are complex and diverse, typically changing over the different phases of the breast cancer journey [1], [2], [3]. To satisfy these changing needs, pertinent information should be available at these different phases. Furthermore, information should be provided in various formats to meet diverse learning preferences. Patients vary in the information they consider important, as well as utilising information for different purposes [4]. One literature review outlined the functions of patient information in cancer care [5]. These include gaining control, reducing anxiety and promoting self-care. In addition, information can help women cope with their illness [6] and inform decision-making regarding treatment and care [3], [4]. Unfortunately, evidence suggests that many women fail to retain information provided, particularly at diagnosis [1]. In addition, some women with breast cancer, notably those post-treatment, report that their information needs are not met [1], [7]. This may result in women seeking information from sources other than healthcare professionals [2].

Both the statutory and voluntary sectors play a role in the provision of information to people affected by breast cancer. Although the majority of cancer patients perceive healthcare professionals to be the most valuable source of information, especially at diagnosis [1], [2], [6], [8], access to professionals can be difficult later in the breast cancer journey [1], [7]. Moreover, need for a second opinion – or additional information regarding their disease – often stimulates women to seek alternative sources of information [1], [2], [9]. There is generally a shift over time from interpersonal (face-to-face) information provided by healthcare professionals to that provided by others [9], including the voluntary sector. Mass media (print and electronic) sources of information such as magazines, leaflets, TV/radio and journals become increasingly popular after treatment [1], [2], [9].

Voluntary organisations offering information and support to people affected by breast cancer often provide information on their websites. Internet use took off in the mid-1990s however, only recently it has been used more widely as a source of health information [10], [11], [12]. This trend is evident in United Kingdom (UK) literature. For example, Luker et al. in 1996 did not refer to the internet as a source of breast cancer information in their study of the information needs of, and sources of information for, women with breast cancer [1]. Whereas evidence published in 2002 suggested that up to 10% of cancer patients frequently used the internet as a source of information [6]. More recently, a study of the information preferences of women receiving chemotherapy for breast cancer, suggested that the internet was the most frequently used mass media source of information for patients, used by 50% of the sample [13]. And, in 2008, the internet was reported to be an important source of information about cancer by 57% of cancer survivors who use the internet [14].

There are both advantages and disadvantages to accessing health information on the internet. It creates opportunities for more informed decision-making, and greater participation in care, as patients are better prepared for consultations with healthcare professionals [15], [16]. However, because the internet is unregulated, information can be of poor quality [17] and patients may find it difficult to identify reputable internet sources [18]. Consequently, it has been suggested that healthcare professionals signpost patients to sites providing accurate and useful information [17].

A systematic review of empirical studies assessing the quality of health information for consumers on the World Wide Web was published in 2002 [11]. This reported that 70% of the 79 studies reviewed had found the quality of health information on the internet to be questionable. The review concluded that because there is no standard method for evaluating the quality of health websites, conclusions from the research will naturally vary. Thus, they suggested that ‘operational definitions of quality criteria [were] needed’ (p. 2691) [11].

A number of studies investigating the quality of breast cancer information on the internet were included in Eysenbach et al.’s review referred to above [15], [18], [19], [20], [21]. Websites appraised by healthcare professionals highlighted variations in the accuracy of information, yet suggested a trend for improvement in quality over time. However, most studies warned that patients using information obtained from the internet to inform decision-making could be basing decisions on information that was inaccurate or incomplete [15], [18], [19].

The most recent study to investigate breast cancer websites was published in 2004 [18]. This employed a cross-sectional research design to assess coverage and accuracy of breast cancer information on, and quality of, Swedish breast cancer websites. The quality was assessed using the European Commission (EC) criteria for health websites [22]. Their findings, similar to those in previous studies, determined that websites did not present accurate breast cancer information [18].

However, given that internet content is subject to change, the currency of research evidence is questionable. Further, the most recent appraisal of websites was conducted in Sweden—a country with a healthcare system that differs from Great Britain (GB). Thus, it appeared pertinent to evaluate the current quality of websites originating in Great Britain that provide breast cancer information.

Section snippets

Study aims

The study aimed to provide a contemporary appraisal of the quality of breast cancer information on GB voluntary health organisations’ websites. Quality of information was assessed in terms of:

  • Completeness: the breadth and depth of breast cancer information provided.

  • Transparency: the reputability of information a website provides.

  • Usability: the ease with which it was possible to navigate around a website and find the information required.

Study design

The study adopted a cross-sectional design. Websites were

Results

Outcomes of the website evaluation are presented by quality criteria. Performance is reported for all 10 websites, as well as by organisation-type.

Limitations

Eysenbach et al. commented that a standardised evaluation tool should be implemented across healthcare websites to enable comparisons of quality [11]. However, such a tool has yet to be developed. Therefore it remains impossible to fully compare the results of this study with previous works. Fortunately, similar criteria have been appraised across some studies, allowing some level of comparative interpretation.

The study did not assess the accuracy of information provided on organisations’

Acknowledgements

This evaluation contributes to the Better Access Better Services Project, a collaboration between Breast Cancer Care, a UK breast cancer charity providing information, emotional support and practical assistance, and the Florence Nightingale School of Nursing and Midwifery, King's College London, UK. The project is funded by the Technology Strategy Board's Knowledge Transfer Partnerships.

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