Review article
Information acquisition for women facing surgical treatment for breast cancer: Influencing factors and selected outcomes

https://doi.org/10.1016/j.pec.2007.08.002Get rights and content

Abstract

Objective

To examine, summarize, and critically assess the literature focusing on information use by early-stage breast cancer patients.

Methods

Empirical articles reporting the information needs, sources used/preferred, and intervention-related outcomes experienced by patients in the context of making a treatment choice were chosen. Several healthcare databases were searched. Articles were limited to those published in English between January 1, 1986 and March 31, 2006.

Results

A total of 25 articles met the inclusion criteria. Information needs were consistent, and highest rankings were for (in order): information about chances for a cure, stage of disease, and treatment options. Results were equivocal regarding the factors found to influence information need: age, time since diagnosis, and preferred role in decision-making. The highest ranked information sources accessed and preferred were physicians. Age, education, and type of treatment chosen influenced source choice. Patients using consumer decision aids (CDAs) had less decisional conflict, higher satisfaction with the decision made and the decision process, and higher knowledge levels.

Conclusion

Information needs and source use were influenced by several personal and contextual factors.

Practice implications

A better understanding of source use could provide more effective ways of disseminating information to patients.

Introduction

For more than a decade now, evidence-based decision-making has been a major trend in healthcare. Rather than relying on unsystematic clinical experience, healthcare professionals are encouraged to base their clinical decision-making on the findings of scientific studies [1]. The ‘evidence’ in evidence-based decision-making is usually understood to be empirically based, with the findings of randomized clinical trials (RCTs) being considered one of the most robust forms of evidence [2] because it has the most objective way of eliminating bias. However, other form of evidence, where bias is more difficult to control (e.g. observational or case studies), may be more appropriate for answering certain kinds of research questions. Regardless of what research design is used, careful, systematic scientific scrutiny is used to determine effective diagnostic procedures and treatments. Optimal patient care is then limited to these practices in order to minimize unnecessary treatment and control costs [3].

While there is an expectation that healthcare providers will incorporate evidence into decision-making involving patient treatments, until relatively recently, there was no such expectation of the patients themselves. In the past, treatment decisions were entrusted to the professional healthcare provider [4], [5], [6], [7]. More recently, trends within healthcare are transforming the patient role in treatment decision-making from one of passive recipient, to one of more equal partner [5]. An increase in ‘consumerism,’ an expansion in the number of viable treatments options available, and the exponential growth of the Internet and availability of health information have all contributed to greater patient involvement in healthcare decisions [8], [9].

Evidence-informed patient choice (EIPC) is a concept that is rooted in the principle of informed choice [10]. In order to uphold the principle, healthcare providers are obligated to ensure that patients are reasonably informed of the risks and benefits of a procedure prior to the patient giving or withholding consent, and are afforded the opportunity to have their concerns and questions addressed [11]. Scientific studies determine the risks and benefits of different avenues of treatment (or non-treatment). In order for patients to be informed regarding treatment choices, they require a reasonable understanding of both the advantages and disadvantages of available treatments.

There is increased opportunity for oncology patients in particular to become involved in decision-making because of the variety of therapeutic options that are available for different cancers. Most oncology patients want to be involved in decision-making and attaining their preferred role in decision-making leads to better quality of life [12], [13]. Despite this, patients do not always assume their preferred role in decision-making [14], [15]. Not all cancer patients wish to be involved in decision-making, despite having more opportunity to do so. Several studies have reported that the degree to which patient wish to participate in decision-making varies widely [15], [16], [17], and that a patient's level of involvement in decision-making is not indicative of their desire for information. Many patients who undertake a passive role in decision-making still want to be well informed. Increases in knowledge, satisfaction, treatment compliance, and quality of life have been reported as positive outcomes of adequate information provision [18], [19], [20]. Not having enough information has been linked to dissatisfaction with care and reduced well-being [17], [21].

Investigators have found that the desire for information is temporal in nature, with different kinds of information being requested at different times throughout the disease trajectory [22], [23]. Generally, the information cancer patients say that they require most is the information about survival and staging of the disease, and about treatment options and related side effects [22], [24]. While the literature widely refers to the desire for information exhibited by a patient as information need, we acknowledge that the term ‘need’ inappropriately describes what is occurring. Using the term ‘need’ implies that there is an objective standard by which the need can be assessed. What is actually being determined is the patients’ expressed desire for information. For the sake of simplicity, however, we will use the term need in order to be in agreement with the existing literature.

Overwhelmingly, healthcare practitioners are the most widely used and the most preferred source of information for cancer patients [25], although there is evidence that the use of electronic and media sources for cancer information has increased significantly [26], [27]. Patients may also use specially designed interventions called consumer decision aids (CDAs) that provide information relevant to a specific decision regarding treatment options. CDAs, used prior to or during a physician consultation, are one way of engaging patients in a meaningful discussion of their treatment options. In addition to providing relevant information, the patient is led through the decision process. Risks and benefits of the treatment options are presented in a format that is easy to understand along with a values clarification exercise meant to elicit the patient's personal preferences regarding different treatment options. CDAs are an increasingly common method of supporting a treatment choice and are often used to facilitate the decision process. However, not all patients may have access to or choose to use decision aids prior to making a treatment choice.

Pierce [28] studied the unaided decision-making process in women with a diagnosis of early-stage breast cancer or a diagnosis of cardiovascular disease and found several problematic aspects of decision behaviour. Decision aids are designed, in part, to counteract faulty decision behavior. Pierce also asserted that the majority of women in her study made satisfactory decisions without the benefit of a decision aid. This unaided decision must be based on some type of information or ‘evidence’. As was mentioned previously, healthcare practitioners are the most preferred sources of information for patients facing a treatment choice; however, other sources such as families, friends, the media, and the Internet are also widely used. Researchers examining the sources used by breast cancer patients have reported inconsistent results, with some investigators reporting that ‘people’ sources are favored over documentary sources [29], [30] and others reporting the reverse [22].

Other factors may come into play when patients make decisions about which treatment to choose other than the simple provision of information. Researchers examining how decisions are actually made in the real world (descriptive theory) rather than how they ought to be made (normative theory) have discovered that people often make decisions that do not appear to be rational. How a choice is ‘framed’ [31], which outcomes a patient values [32], and whether the patient has the ability or motivation to understand the intricacies of the scientific information [33] may all play a role in how a decision is made. Decisional heuristics, adaptive ‘short-cuts’ in the decision process are used to make decisions in complex situations where information may be incomplete or difficult to understand. Also, the emotional impact of being diagnosed with cancer may lead patients to base decisions on fear rather than scientific evidence [34].

In terms of theoretical research, two particularly informative models of how oncology patients seek out healthcare information exist in the literature. Johnson [35] produced the comprehensive model of information seeking (CMIS) which focuses on characteristics and utility of information channels (sources) as well as factors antecedent to information seeking (personal relevance and background factors). More recently, Longo [36] developed a conceptual model, which identifies several personal and contextual factors thought to influence information seeking and use; factors that are roughly equivalent to Johnson's personal relevance and background factors. But instead of focusing on the characteristics of the sources, the Longo model describes the actual process of information seeking and information use. Two kinds of information use are identified: one resulting from active information seeking and one resulting from the passive receipt of information. In each of these two categories, several phases of information use are identified according to the level of the patient's involvement. For example, in phase 1, the patient is not aware of or does not receive the available information. In phase 2, the patient is aware of the information but does not attempt to access it, or passively receives it and so on. Longo identifies satisfaction, health outcomes, activities of daily living (ADLs), and empowerment/locus of control as relevant patient outcomes.

Conceptual models are helpful in identifying key variables that are to be studied, and can help in organizing the findings of related research [37]. Evidence obtained from empirical research or systematic review of the existing literature either refute or confirm the models proposed relationships, thus either challenging or strengthening the model. The ultimate goal is to produce the most accurate and parsimonious representation of the ‘truth’. The Longo model is useful in that it synthesizes and integrates the concepts surrounding information seeking and use by cancer patients, however, the relationships proposed need to be tested and refined. It is our intention to determine whether or not the influencing factors and relationships presented in the Longo model are supported by the existing literature. In order to resolve this, we have sought out empirical articles that explore the ways in which breast cancer patient's acquire and utilize information for treatment decision-making.

In this paper, the authors survey the existing literature relating to the expressed information needs of early-stage breast cancer patients facing a treatment choice between mastectomy and lumpectomy, the information sources used to satisfy these needs, and the outcomes related to decisional support interventions. Specifically, we summarize research related to the following questions:

  • Question 1:

    What are the various expressed information needs of early-stage breast cancer patients (in terms of type, range, quality, and quantity) and what sources of information are used to fill these various needs within the context of a treatment decision between mastectomy or lumpectomy?

  • Question 2:

    What effects do women identify as a result of using research evidence, specifically decision aids used to support a treatment decision between mastectomy and lumpectomy?

Section snippets

Methods

Broadly speaking, the aim of a systematic review is to synthesize the findings of several studies that address the same topic or problem, using strategies that limit bias and random error. Studies are put through a rigorous critical appraisal process and findings are combined and interpreted [38]. When findings are too diverse to be compared statistically or when the research methods used are dissimilar, a more narrative approach must be undertaken. The research questions guiding this review

Results

The retrieved articles were sorted into three broad categories. In all of the articles, the study participants were early-stage breast cancer patients within the context of having to make a treatment decision between mastectomy or lumpectomy. Investigators in the first group reported on studies examining information needs (Table 1), the second group on the sources of information preferred and/or used (Table 2), and the third group on the effectiveness of a specific decisional support

Discussion

This review focused on the information needs identified by early-stage breast cancer patients in the context of making a treatment choice and the sources of information they access to satisfy those needs. Investigators have conducted systematic reviews of the literature examining the information and support needs of breast cancer patients [23] and cancer patients in general [22], but none have focused specifically on information needs in the context of making a treatment choice. Only one

Acknowledgements

Ms. O’Leary is supported by an Alberta Heritage Foundation for Medical Research (AHFMR) M.Sc. studentship and a Canadian Institute for Health Research (CIHR) Graduate Scholarship.

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      Quality appraisal classified 8 studies as strong, 2 as strong/moderate due to inconsistencies in sample figures reported [22], omission of percentage figures for study completion [34], and 2 moderate due to unreported randomisation strategy [35] and missing data regarding patient invitation numbers, those that participated and those that declined [36]. Included studies explored aspects of information and decision-making often adopted cross-sectional descriptive approaches, consistent with the findings of other relevant reviews [37,12]. Five studies used semi-structured or unstructured interviews [36,38–41], five included surveys/questionnaires [42,43,34,44,22], one used focus groups [45], and one conducted statistical analysis of clinical data from patients invited to a screening programme with counselling and reported surgical decisions made [35].

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