The use of patient and provider perspectives to develop a patient-oriented website for women diagnosed with breast cancer

https://doi.org/10.1016/j.pec.2008.05.032Get rights and content

Abstract

Objective

Develop a patient education program that provides accurate and easy-to-understand information for newly diagnosed breast cancer patients.

Methods

To inform development of the patient education program, we conducted a longitudinal series of semi-structured interviews with 30 breast cancer patients as well as one-time interviews with 22 healthcare providers. Responses guided the study team's decisions regarding both form and content.

Results

We created a website (www.cancercarelinks.org) that reflects the needs expressed by patients and providers. The website is structured to answer six key questions that emerged in the interviews: What does my diagnosis mean? What will my treatment be like? Who will be involved with my treatment? What has treatment been like for others? How can I share my story with my family and friends? Where can I find more information and support? In a beta-test, 12 breast cancer patients rated the website as very clear, informative, trustworthy, useful, easy-to-understand, and easy to use.

Conclusion

The emotional weight of a breast cancer diagnosis, coupled with the amount of disparate information available, can be overwhelming for patients. Providing clear, accurate, and tailored information is a way to meet information needs and allay fears that patients will receive “bad” information.

Practice Implications

Combining patient and provider input with the perspectives of a multidisciplinary team resulted in a promising patient education program for women diagnosed with breast cancer. The logic of this approach has implications for developing patient education programs for a variety of clinical contexts.

Introduction

Breast cancer is the leading cause of cancer morbidity and second leading cause of cancer death for women in the United States, with more than 200,000 new cases diagnosed each year and over 40,000 deaths [1], [2]. Breast cancer care has been an area of great interest to researchers interested in information needs and decisional support because many choices are available, particularly in the area of surgical treatment (i.e., lumpectomy vs. mastectomy) and adjuvant therapy [3], [4], [5], [6], [7], [8], [9], [10]. Among cancer patients at various stages of disease and treatment, investigators consistently find that most patients want detailed information about their condition, even if they do not want control of the decision-making [11], [12], [13], [14]. Yet the literature suggests that physicians may both underestimate patients’ information needs and overestimate the amount of information they provide [15].

While there are many resources and decision points for newly diagnosed breast cancer patients, studies tend to focus solely on the decision between lumpectomy and mastectomy. For example, a recent systematic review focused on information needs, information sources, and trials of patient decision aids for women with early stage breast cancer facing the decision of lumpectomy vs. mastectomy [16]. Such studies do not address either the range or evolution of informational, decisional, and emotional support needs over time [15]. As a patient progresses through treatment and becomes more familiar with her disease and options, perspectives may shift. Moreover, behaviors among patient-provider dyads may not be stable as a patient moves through the course of disease and treatment, which may include surgery, chemotherapy, and/or radiation [10], [15], [17], [18]. Studies have indicated unmet needs after the time of initial diagnosis, including continuing information needs related to prognosis, lifestyle, and hormonal effects [19].

We endeavored to use patient and provider interviews as a basis to develop a patient education program that provides accurate, easy-to-understand information for newly diagnosed breast cancer patients. Although it is considered good practice to work with members of a target population to pre-test concepts and messages [20], researchers and public health practitioners often have aspects of both content and media in mind at the outset of a project. While our goal was to develop a patient education program that is relevant across the continuum of breast-cancer care, there were not a priori plans with respect to form or content. That is, our approach was to let interviews with patients and providers guide development of the final product.

Section snippets

Study team

The core research team included faculty with expertise in communication science, cancer communication, public health, clinical psychology, health education and multimedia production, a breast cancer survivor who worked as the research assistant for this project, and a multimedia specialist with considerable experience in web design. We also consulted periodically with surgical oncologists, medical oncologists, radiation oncologists, and a palliative care specialist.

Structured interviews

To inform design of the

Results

Our approach was to allow the feedback from patients and providers to guide program development. Accordingly, the interview responses were instrumental in terms of both the form and content of the patient education program.

Discussion

The emotional weight of a breast cancer diagnosis, coupled with the amount of disparate information available, can be overwhelming for patients [26]. Patient education materials are common on the Internet, and there is a wide array of web-based information on breast cancer. However, these websites can be hard to navigate and tend to present information that may be overly complicated and difficult to understand [27], [28], [29]. Moreover, advances in treatment can quickly render information

Acknowledgements

This study was funded, in part, by a grant from The Arthur Vining Davis Foundations (PI: Dr. Makoul). We are grateful for the dedicated and sensitive research assistance of Ms. Kathy Bresler, as well as the creative and technical efforts of Mr. Quinn Stephens, a very talented digital media designer. We thank all of the patients, family members, and providers who participated in this study, especially Drs. Kevin Bethke, Nora Hansen and Seema Khan, surgical oncologists who supported the idea of

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