Gaps in Online Breast Cancer Treatment Information for Older Women

Abstract

Introduction:

or women over 70 years with early-stage breast cancer, the routine use of sentinel lymph node biopsy (SLNB) and adjuvant radiotherapy offers no overall survival benefit and may be perceived as undesirable by many women. National guidelines allow for possible omission of these practices in older women. Our objective was to assess the availability of web-based educational materials targeting older women and their age-specific treatment recommendations.

Methods:

We systematically assessed the websites of the top 25 “Best Hospitals for Cancer” ranked by the U.S. News & World Report, as well as the websites of four prominent national cancer organizations.

Results:

Websites for the leading cancer hospitals and national cancer organizations contain extremely limited information directed towards older patients with breast cancer. Both SLNB and adjuvant radiotherapy were described as treatments “typically,” “most often,” or “usually” used in combination with breast-conserving surgery, without noting circumstances for possible omission. Specifically, no hospital website and only one national organization included information on the recommendation to avoid routine SLNB. Only two hospitals and two national organizations included information suggesting possible omission of adjuvant radiotherapy in patients over 70 years.

Discussion:

The absence of online material for older patients with breast cancer represents a gap potentially contributing to overtreatment by framing SLNB and adjuvant radiotherapy as necessary. Informational resources available to women ≥ 70 years may aid in informed physician-patient communication and decision-making, which may reduce SLNB and adjuvant radiotherapy in patients who might opt out of these procedures if fully informed about them.

INTRODUCTION

In 2019, over 30% of new patients with breast cancer in the United States were women over 70 years, and the majority of these women were diagnosed with early-stage, hormone receptor-positive (HR+) cancer.¹ These favorable features and excellent disease-specific prognosis combined with an increased susceptibility to toxicities from common cancer treatments have led to recommendations allowing for the omission of previously routine therapies. For example, in 2016 as part of the Choosing Wisely® campaign, the Society of Surgical Oncology (SSO) recommended against the routine use of axillary staging with sentinel lymph node biopsy (SLNB) in women ≥ 70 years with early-stage HR+ cancer. Similarly, the National Comprehensive Cancer Network (NCCN) adopted guidelines in 2004 allowing for omission of adjuvant radiotherapy in older women on hormone therapy with small, HR+ tumors and clinically negative lymph nodes.^2–4 Despite these recommendations, data demonstrate minimal de-implementation of both therapies. An increasing proportion of women ≥ 70 years with HR+ positive breast cancer receive SLNB (currently over 80%), and despite a modest decrease in radiotherapy rates from 77% in 2004, 64% of patients who were eligible for omission received adjuvant radiotherapy in 2015.^5,6 Although the exact reasons for the persistence of these low-value services remain unclear, evidence suggests they are multi-level, in that both patient and provider-related factors drive their continued use.

Age-specific treatment recommendations for women ≥ 70 years old contribute to the informational needs of older patients with breast cancer. To meet these needs, older women seek cancer-related information from a variety of resources, and an increasing number are turning to online materials for supplemental information about their breast cancer treatment options.⁷ The accuracy and readability of available web-based information varies widely and patients’ experiences seeking online material related to their treatment options have been mixed.⁸ Although a majority of women in one study reported that online information increased their general understanding of their cancer, as many as one-third reported that it led them to expect things unavailable or inapplicable to their case, or led them to misunderstand their clinical situation.⁹ This may be of particular concern for older patients using online information to better understand their treatment options, given the unique nature of their treatment recommendations and lower electronic health literacy at baseline compared to younger patients.¹⁰

While studies have described the online information-seeking behaviors of patients with breast cancer and the quality of online breast cancer educational material in general, no study has evaluated the extent of online information online specifically targeting older patients. To determine whether accessible educational materials specific to older patients with breast cancer exist, we assessed and characterized the publicly available online information of leading cancer hospitals and prominent national cancer organizations. Specifically, we identified whether patient-facing materials on these websites make any suggestion of the guidelines allowing for the omission of SLNB or adjuvant radiotherapy in women over 70 years. By describing the scope of web-based information targeting older women with breast cancer, we aim to identify potential gaps in patient education and highlight opportunities for increased patient involvement in high quality decision-making, which may ultimately help to reduce the utilization of low-value treatments that many patients may choose to omit if fully informed about their options.

METHODS

We conducted a systematic content analysis of the websites for 25 leading cancer hospitals and four national breast cancer organizations over a two-month period from April 1, 2020 to June 1, 2020. The University of Michigan institutional review board deemed this study not regulated given it is not human subjects research.

Data sources

We focused our analysis on the top 25 hospitals identified by the U.S. News & World Report (USNWR) “Best Hospitals for Cancer” list for 2019–2020¹¹, as well as four prominent national cancer organizations (American Cancer Society®, Susan G. Komen®, National Comprehensive Cancer Network, and the National Cancer Institute). The USNWR Best Hospitals ranking is determined by three performance measures including structure (e.g. hospital volume and environment), process or expert opinion (e.g. survey-determined quality of care and patient experience), and outcomes (e.g. patient survival and inpatient discharge rate).¹² Additionally, we selected four prominent national cancer organizations on the basis of them having been identified either in previous research as an informational resource used by patients (e.g. American Cancer Society and National Cancer Institute)^13,14, a top-funded breast cancer organization (e.g. Susan G. Komen Foundation), or an outlet for patient-facing clinical practice guidelines (e.g. National Comprehensive Cancer Network). We accessed all cancer hospital homepages by performing a web search of the name printed on the USNWR “Best Cancer Hospitals” list, followed by the words “cancer center” if not already included in the name. National cancer organization homepages were accessed by performing a web search of their official name, followed by the words “breast cancer treatment”.

Data Elements

Two researchers (AB and NM) independently collected and evaluated information from all 29 websites. Data were collected and managed in separate spreadsheets used for subsequent comparison to ensure consistency and completeness of the results. When there was a dispute in the data, both researchers returned to the website and discussed the content until a consensus was reached.

We assessed homepage content for direct links or drop-down menu options for patientinformation or resources, cancer diagnoses and treatment information, or information on specific diseases/cancer types (e.g. “Diseases and Conditions A-Z”). We used these links on the websites’ homepages to navigate to webpages that specifically provided information on breast cancer treatment (Figure). On each of the hospital and breast cancer organization websites, we looked for breast cancer treatment information related to SLNB and adjuvant radiotherapy. To fully assess for SLNB-related information, we examined information regarding breast cancer surgery more broadly. We documented whether SLNB was discussed independent of breast conserving surgery, as opposed to just a component of it, and whether there was information regarding indications for SLNB. Similarly, we examined and assessed information on radiotherapy, particularly adjuvant radiotherapy after breast conserving surgery. After assessing the general information on SLNB and radiotherapy, we searched for information on breast cancer treatment recommendations in older women (e.g. guidelines allowing for omission of SLNB and/or adjuvant radiotherapy in women ≥70 years) by scanning the page and reviewing links to internal webpages or external websites. We also evaluated any information more generally targeting specific patient populations (e.g. young or pregnant women with breast cancer). Links to internal breast cancer resources for older women were followed and the content was similarly analyzed.

Figure.

Example of web-based navigation to breast cancer treatment webpage on hospital website.

Additionally gathered data included when the website’s content was created or updated (i.e. copyright date) and whether there were links to external resources on breast cancer care. We determined that we had reviewed all of each website’s available information pertinent to the study aims after assessing all of the treatment information related to surgery and radiotherapy and when internal links did not yield any new information on SLNB, adjuvant radiotherapy, or that targeted older women.

Analysis of breast cancer treatment information

Data was categorized by the website source (i.e. hospital or organization) and organized into themes based upon the treatment type (i.e. SLNB or adjuvant radiotherapy) or the targeted patient population. Data was analyzed using summary statistics to determine the proportion of websites describing SLNB and adjuvant radiotherapy, and further the proportions mentioning possible omission of these therapies or providing age-specific treatment information. We selected quotes discussing SLNB and adjuvant radiotherapy as examples for how omission or inclusion of these respective therapies was presented on the various websites (Table).

Table.

Examples of patient-facing information from national cancer organizations and leading cancer hospitals.

Classification	Website coverage	Website excerpt (source)
Sentinel lymph node biopsy omission	0 hospitals (0%)a 1 organization (25%)	No lymph node surgery may be an option if you are of older age. (National Comprehensive Cancer Network Guidelines for Patients®)
Adjuvant radiotherapy omission	2 hospitals (8%)a 2 organizations (50%)	If you have invasive breast cancer and are younger than 70 years of age, a lumpectomy is always followed by radiation treatments to the breast. (Memorial Sloan Kettering Cancer Center) Women who are at least 70 years old may consider breast conserving surgery without radiation therapy if ALL of the following are true: the tumor was 2 cm or less across and it has been removed completely, none of the lymph nodes removed contained cancer, the cancer is ER+ or PR+, and hormone therapy is given. (American Cancer Society®)
Sentinel lymph node biopsy inclusion	23 hospitals (92%) 3 organizations (75%)	In both lumpectomies and mastectomies, surgeons may also remove nearby lymph nodes. (University of Texas MD Anderson Cancer Center) Typically, some of the lymph nodes, either in the breast and/or under the arm are also removed for evaluation. (Cleveland Clinic)
Adjuvant radiotherapy Inclusion	22 hospitals (88%) 2 organizations (50%)	Patients who undergo lumpectomy surgery for treatment of their breast cancer almost always receive radiation therapy afterward. (Johns Hopkins Hospital) In most cases, radiation therapy is used after breast-conserving surgery. (UPMC Presbyterian Shadyside)

^aAdded percentages do not equal 100: two hospitals did not talk about sentinel lymph node biopsy at all and one hospital only spoke about general radiotherapy (non-specific to breast cancer).

RESULTS

Cancer Hospital Websites

All of the publicly available websites for the 25 leading cancer hospitals had a webpage dedicated to breast cancer treatment, which was accessible through a link on the homepage to either “Diagnoses and Treatments,” “Diseases and Conditions A-Z”, or a variation and/or combination thereof. Breast cancer treatment webpages were frequently organized into categories such as treatment overview, surgery, radiation therapy, chemotherapy, and hormone therapy. However, some treatment webpages had more detailed treatment categories such as lumpectomy and lymph node biopsy. Twenty of the websites had copyright years of 2020, one each of 2018 and 2019, and three were not provided.

A total 23 (92%) of websites provided information about SLNB, 87% of which had language dedicated to SLNB either under its own “SLNB” or “Lymph Node Biopsy” heading on a more general page about surgery or on its own page accessed through a separate link. SLNB-specific information most frequently described how and why SLNB is performed (e.g. “to determine if cancer has spread” or for “staging the cancer and planning for the patient’s follow-up treatment”).^15,16 The majority (64%, n=16) of websites presented SLNB as a procedure done concurrently with mastectomy or breast conserving surgery (i.e. lumpectomy or partial mastectomy). In these cases, SLNB was described as a treatment that is “routinely”, “typically,” “most often,” “likely,” or “usually” performed in combination with a surgery to remove the primary breast mass. Only seven (28%) websites discussed SLNB independent from explanations about mastectomy or breast conserving surgery. Two (8%) websites did not mention SLNB at all. No website included information on the SSO recommendation to omit routine SLNB in patients over 70 years with early-stage breast cancer or suggested that the decision to undergo SLNB may be different for older women compared to younger women.

Nearly all (96%, n=24) of the hospital websites provided information regarding adjuvant radiotherapy in the treatment of breast cancer. The one exception was a hospital website that only provided general information about radiotherapy, in that it was not specific to breast cancer. Almost all of the websites (88%, n=22) gave explanations for why radiotherapy was necessary, describing it as a treatment performed after breast conserving surgery to “kill cancer cells or keep them from growing” or “help decrease the risk of [cancer] recurrence.”^17,18 Some websites provided specific information about possible adjuvant radiotherapy regimens (e.g. “patients often receive three to four weeks of daily radiation therapy”).¹⁹ Similar to SLNB, adjuvant radiotherapy was described as a treatment “commonly”, “almost always”, or “usually” given to “most women” after breast conserving surgery. However in contrast to SLNB, two institutions (8%) included information to suggest that adjuvant radiotherapy may be omitted for patients over 70 years with early-stage breast cancer. One of these sites indirectly suggested this recommendation by describing how it is recommended for women under 70 years.²⁰ The other site provided more targeted information toward older women but via a link to an internal blog that explained that women over 70 years “may not require radiation following a lumpectomy and can do well without this treatment” with an external link to a Journal of Clinical Oncology editorial regarding the NCCN treatment guideline.^21,22 A third site suggested that older women should still receive radiotherapy, rather than omitting it, but noted that they may be candidates for less aggressive, localized radiotherapy.²³

Three (12%) hospitals’ websites offered targeted information for older women in the form of blog posts, videos, links to in-person services for older women, links to external resources (e.g. Cancer & Aging Research Group), and links to clinical trials for older women. These materials acknowledged the need for providers to tailor therapies to the individual patient and recognized the potential treatment challenges older women may face due to age-associated comorbidities. However, with the one exception listed above, they did not specifically identify how treatment recommendations for older women may be unique due to age. Websites provided targeted information to other specific populations with a greater frequency (young women with breast cancer, n=7; pregnant women with breast cancer, n=4; and men with breast cancer, n=11). Twenty websites provided a link to clinical trials in breast cancer care, ten websites provided external links to national breast cancer organizations, and four websites had links to the NCI’s Physician Data Queries (PDQs), two of which used the PDQs in place of original treatment information created and provided by their institution.²⁴

National Breast Cancer Organizations

All four of the national breast cancer organizations provided general treatment information on SLNB and adjuvant radiotherapy that described why and how each treatment is given to patients with breast cancer similar to the hospital websites. They also emphasized that breast cancer treatment should be tailored to the individual patient, with one website acknowledging that treatment regimens should take into account “overall health, age, and other medical issues.”²⁵ However, of the four organizations, only the NCCN provided information on the recommendation allowing for omission of SLNB in older women with early-stage breast cancer. Similarly, only the NCCN and American Cancer Society® noted the possibility of omitting adjuvant radiotherapy in women ≥ 70 years who met the specific clinical guideline criteria (i.e. T1 tumor, N0 lymph nodes, and receiving hormone therapy). Aside from these few mentions of the SLNB and adjuvant radiotherapy treatment guidelines for older women, none of the national organizations offered specific online patient materials targeting older women, despite targeting other patient populations (e.g. young women, pregnant women, and men with breast cancer). Even the NCI’s series of PDQs, which were referenced or used in place of original information by several hospital websites, did not include a page for older women. All four websites included information on clinical trials and had copyright years ranging form 2018 to 2020.

DISCUSSION

The results from our study demonstrate that websites for the U.S. News & World Report top 25 cancer hospitals and four well-known national cancer organizations have extremely limited information specific to older patients with breast cancer. Specifically, the 2016 SSO recommendation to allow for omission of SLNB in older women with early-stage breast cancer was not mentioned by any of the hospital websites and was only noted by the NCCN among the national organizations. Similarly, only three hospital websites and two organization websites suggested some women over 70 years may omit adjuvant radiotherapy despite the introduction of this guideline more than 15 years ago in 2004. Although many websites provided targeted information to certain patient populations like younger or pregnant women, they rarely provided resources or educational information specific to older women.

Currently available public information frames SLNB and adjuvant radiotherapy as necessary, rather than safe to omit, especially given the language used to describe these treatments. Words suggesting SLNB and/or adjuvant radiotherapy almost always accompany breast conserving surgery may be appropriate to describe recommended treatment for younger women, but can falsely bias older patients towards thinking these interventions are necessary for them as well. Furthermore, if older women believe they require radiotherapy after breast conserving surgery, in order to avoid radiotherapy they may choose to undergo a mastectomy which is more extensive but provides no survival benefit as compared to breast conserving surgery. Given that as many as 54% of cancer patients search for information online prior to their oncology visit, educational materials supporting the necessity of SLNB and adjuvant radiotherapy may prime the physician-patient discussion to favor these therapies.¹³ If led to believe these treatments are standard of care without the knowledge that they may be omitted, older women may expect these therapies, potentially leading to overtreatment. For patients who seek online information to help them process what they learned at their oncology office visits, a lack of age-specific information may contribute to confusion when the recommendations online do not align with those of their provider.^13,26 Patients who cannot recall all of the information given to them during in-person visits may rely even more heavily on web-based material accessible from home. Ultimately, the dissemination of patient education materials addressing age-specific recommendations will allow for improved patient-centered care. As cancer treatment becomes increasingly personalized, presenting older patients with information supporting a tailored treatment strategy based their age, breast cancer stage, and subtype will allow for more individualized care while avoiding overtreatment.

Given that institutional experts typically curate their institutions’ online information, the lack of messaging on SLNB and adjuvant radiotherapy omission for older women on these websites may represent local practice patterns or a lack of skills or knowledge in curating age-specific patient-facing material. Additionally, the lack of age-specific information online likely extends to the printed educational materials patients receive from their provider during their office visit. Despite nearly all websites having recent copyright dates, the greater lack of information about the more recent recommendation to omit SLNB, compared to the relatively older recommendation to omit radiotherapy, highlights a dissemination gap in which there is significant lag time between when clinical trials generate evidence, when national guidelines change to reflect this knowledge, and when patient information is updated to reflect these changes.²⁷

This study demonstrates a significant opportunity for the breast cancer community to improve patient-facing materials for older patients. Patients and families seek out information regarding breast cancer treatment options, especially when they are health-minded or anxious.²⁸ To this end, acquisition of information online can cultivate increased patient and family competence in managing challenging conditions like breast cancer.²⁹ It is worth noting that a majority of the websites required several steps to locate information specific to breast cancer treatment and pathways could be circuitous depending on which internal links were chosen. Given older women are less likely to feel confident evaluating health resources online,¹⁰ websites should not only have patient-facing materials with the full scope of relevant content, but these materials should be designed with older adults in mind by breaking information into short sections, enlarging font size and increasing color contrast, minimizing use of scrolling, and using single mouse clicks, among other strategies.^30,31

Our study has several important limitations. Importantly, we restricted our analysis to 25 cancer hospitals (all academic medical centers) and four prominent national cancer organizations, which may not reflect the online information available on other hospital and organization websites. However, prior research demonstrates that high-volume centers with specialists and multidisciplinary teams, like academic centers, are more likely to provide guideline concordant recommendations. As a result, we believe that the cancer centers we examined are the most likely to provide patients with information on more recent treatment recommendations like SLNB and adjuvant radiotherapy omission.^32,33 Additionally, we recognize that prior studies demonstrate women over 70 years comprise the minority of Internet users.^7,9 However, increasing numbers of older patients are seeking information online, which represents a growing cohort of women who are independent, sufficiently adept at navigating the Internet, and actively engaged in their treatment decision-making despite their physiologic age. Furthermore, the older women who may be less inclined or unable to directly use online materials are likely informed about their treatment options by younger family members or friends who themselves almost certainly consult the Internet. Given that loved ones prominently influence patients’ breast cancer treatment decisions, it is important that the online materials accurately provide age-specific information with the understanding that both patients and family or friends may be viewing these sites to help make decisions.³⁴

With patients increasingly utilizing the Internet to obtain cancer-related information, the absence of online patient-facing material specific to older women with breast cancer represents a gap in patient-centered care that may contribute to overtreatment. Particularly for older women who may have difficulty accessing other information because they are homebound or have little social support, online information can potentially become a central resource to inform and facilitate increased participation in decision-making, which may help reduce therapies that do not improve survival and may not be desired by some older patients. Informational resources available to women ≥ 70 years would likely aid in physician-patient communication regarding treatment options, address anxiety due to mixed messaging about treatment recommendations, and potentially reduce SLNB and adjuvant radiotherapy in patients who may choose to omit these treatments if appropriately informed.

Synopsis.

For women ≥70 years with early-stage breast cancer, sentinel lymph node biopsy and adjuvant radiotherapy offer no survival benefit. Limited online information reflecting the recommendations to omit these therapies in older women may contribute to unnecessary costs and potential overtreatment.