Breast cancer is the second most commonly diagnosed cancer among U.S. women,* but despite its prevalence and the commonly involved surgical treatment options for the disease, there has been a dearth of evidence-based, patient-centered resources that support patient engagement and active participation in their breast cancer surgery. To address this gap, the American College of Surgeons (ACS) Patient Education Program in June launched the Your Breast Cancer Surgery Program, a fully web-based product that guides patients and their families through a breast cancer operation from beginning—including screening and diagnosis—to end, including recovery and other therapies. The Your Breast Cancer Surgery Program is intended to provide all the information that breast cancer patients will need to understand their operation in a digital format with a clear, compassionate voice.
The program is available on the ACS website at facs.org/education/patient-education/skills-programs/breast-cancer.
This article outlines what the program offers and looks at what motivated its creation, development, and indications of success.
What the program offers
The Your Breast Cancer Surgery Program is an educational tool that offers breast cancer patients and their families critical information through tailored text, supporting graphics, and an extensive video component.
Housed in the Skills Programs area of the Patients and Families section of the ACS website, the Your Breast Cancer Surgery Program provides a complete guide on the experience of the breast cancer patient. The nine primary sections are as follows:
- Your Breasts, which describes the anatomy of the breast
- Breast Cancer, divided into Non-Invasive Cancers, Invasive Breast Cancers, and Breast Cancer Staging subsections
- Understanding Your Operation, divided into Breast-Conserving Surgery (Lumpectomy), Mastectomy, Clinical Trials, Breast Reconstruction, and Breast Inserts subsections
- Preoperative Tests and Imaging, divided into Self-Breast Exam, Mammography, Breast Ultrasound, Breast MRI (magnetic resonance imaging), and Biopsy subsections
- Your Health Care Team, which provides a downloadable, interactive list of the potential members of a patient’s health care team
- Preparing for Your Operation, which provides information on important preparations, including monitoring medications, quitting smoking, and developing an opioid-sparing pain plan, among others
- The Day of Your Operation, which provides instructions on food and drink, preventing surgical infection, items to bring to the hospital, and safety checks and guides, among others
- After Your Operation, which describes information on expected length of stay in the hospital, the postsurgical bra, and common side effects and is divided into Your Surgical Drain, Pain Control, Prevent Swelling and Lymphedema, and When to Call Your Surgeon subsections
- Self-Care and Additional Therapies, divided into Radiation Therapy, Drug Therapies, Complementary and Alternative Medicine, Survivorship, and Recurrence subsections
These sections provide detailed, understandable text, supporting images, and a video on the opening page that provides additional information and a real patient’s activities and thoughts related to their operation. Additionally, a Resources section provides links to other important information, breast cancer organizations, and support groups that patients and families may find useful. The Breast Cancer Surgery Videos section provides quick access to all the videos included in the program.
A pressing need
The importance of patient-centered care has become increasingly recognized as a critical element of modern health care, and the need for evidence-based patient education is particularly important in the multidisciplinary treatment that breast cancer patients require. However, the ACS recognized that the surgical component was not being fully addressed for patients.
“There is a lot of breast cancer information on radiation therapy, chemotherapy, and other new therapies, but nothing taking you through the entire surgical experience,” said Nancy Strand, MPH, RN, Senior Manager, ACS Patient Education. And according to Kathleen Heneghan, PhD, RN, PN-C, Assistant Director, ACS Surgical Patient Education, “There are many organizations that guide breast cancer patients through their treatments, but when it comes to surgery, they mainly say, ‘Surgery is an option for your treatment’ and might list possibilities like a lumpectomy, but they don’t go into detail on how the patient can plan and participate in their care.”
Literature suggests that women felt ill-prepared, physically and emotionally, to handle their operations and did not have the information they needed to make the best treatment decisions for themselves. A 2018 Journal of the American College of Surgeons article, coauthored by program task force member Sunny Mitchell, MD, FACS, associate chair of surgery and director of women’s health services, Coney Island Hospital, New York, NY, showed that only 47 percent of breast cancer patients feel completely informed about their operations.†
“With breast cancer, there’s so much information out there, and sometimes it’s not accurate, and other times it may be accurate, but it isn’t designed for patients,” said Jill Dietz, MD, FACS, chief transformation officer and director of breast growth and strategy, Allegheny Health Network Cancer Institute, Pittsburgh, PA; Chair, National Accreditation Program for Breast Centers (NAPBC) Standards and Accreditation Committee; and member, Your Breast Cancer Surgery Program Task Force. “Studies show that patients overestimate the risk of having a bad outcome from breast cancer, and education helps to alleviate that gut-wrenching reaction to a breast cancer diagnosis. It helps patients to understand their risks and to make good decisions,” said Dr. Dietz, immediate past-president of the American Society of Breast Surgeons (ASBrS).
The sheer volume of disparate information, and misinformation, now available via the Internet makes it all the more important for this type of program to be available for breast cancer patients, according to Jane E. Mendez, MD, FACS, chief of breast surgery, Miami Cancer Institute, FL; member, Your Breast Cancer Surgery Program Task Force; and member, ACS Patient Education Committee. “There is a need for reputable information, now more than ever. Google and other websites can give recommendations, but none of that is monitored or data driven. A reputable source of information for women and their families can help them as part of their care journey.”
The concept of focusing on a breast cancer patient’s care journey—the total diagnosis, treatment, and survivorship experience of a patient—has become a primary focus for both patients and care teams. “The style of the programs reflects the patient journey from initial diagnosis through consultations and treatment,” said Terry Sarantou, MD, FACS, surgical oncologist, Levine Cancer Institute–Morehead, Charlotte, NC; Immediate Past-Chair, NAPBC Standards and Accreditation Committee; and member, Your Breast Cancer Surgery Program Task Force. “Many other resources require patients to look up information on staging, surgery, radiation, and chemotherapy, while this reflects the patient journey, which focuses a bit less on what we recommend as physicians and more on what the patient specifically needs to know.” This emphasis on the patient journey also is reflected in the updated NAPBC Standards.
How it was developed
In addition to the recognized importance of patient education, the ACS Advisory Councils, Governors, chapters, and members had consistently requested that the College develop a program on breast cancer, according to Ms. Strand. With funding available to support the project from the Loyal and Edith Davis Fund and approval from David P. Winchester, MD, FACS, Past-Medical Director, ACS Cancer Programs, and then by current Medical Director Heidi Nelson, MD, FACS, work on the Your Breast Cancer Surgery Program began in 2018.
Choosing content, guided by experts and patients
Performing a gap analysis to understand patients’ specific informational needs and a literature review to gather critical information helped form the scientific, data-driven foundation of the program, and the surgical task force provided further guidance. But the challenge was not going to be to find comprehensive information; it was deciding what best suited patients’ needs and would support optimal surgical outcomes.
“We received some suggestions to start the program post-diagnosis, but it’s not a linear path with breast cancer,” Ms. Strand said. “Patients can experience reoccurrence, misdiagnosis, and inconclusive scans—and then diagnosis, testing, staging, treatment. We couldn’t predict at what point of contact patients will seek this information,” so the decision was made to be inclusive of every step, at least in broad strokes.
“We wanted to be comprehensive since breast cancer is multidisciplinary by nature. The necessity of chemotherapy or the choice not to take it, radiation therapy, reconstructive surgery—all of these elements are a part of the journey,” Dr. Mendez said. But there is a risk of being overwhelming and getting lost in what a patient might consider minutiae. “On some things we wanted to drill down into the details, but on others we just wanted to make patients aware and then guide them to other potential links for more information,” which the expansive Resources section is designed to address.
But patients were the guiding force behind the decisions regarding what content to include and in what form. “In this process, we found it extremely valuable to include, involve, and speak with patients to try and understand the things that were important to them,” Dr. Dietz said. “This wasn’t a bunch of surgeons getting together and deciding, ‘This is what we think patients should know.’ In developing patient education materials, we observe what a patient is going through and asking, ‘What is important to you? What are you feeling? What is difficult?’”
Dr. Heneghan noted that the program was developed with consensus on best practices from multiple associations. It also was iterated upon through feedback from laypersons who may or may not have had experience with breast cancer surgery, as well as a particular emphasis on patient evaluations.
Complementing the detailed text on the program website, the video component of the Your Breast Cancer Surgery Program was designed to connect with patients. Emily Diego, MD, FACS, section chief, breast surgery, University of Pittsburgh Medical Center Hillman Cancer Center, PA, provides the surgeon’s voice in the videos, but the narratives are focused on parts of the care journey of three real patients. The ACS Patient Education Program was given access to Northwestern Medicine Central DuPage Hospital, Winfield, IL, and was able to film the experiences of these women. “We found a patient who was having breast cancer surgery, a nurse who previously ran the breast cancer center at Central DuPage and allowed us to film her entire day of surgery. So, it was very honest,” Ms. Strand said. Another patient discussed the struggles of reconstructive surgery, and the third spoke on her experience with lymphedema. These patient experiences provide an emotional core of the Your Breast Cancer Surgery Program.
A culturally sensitive Spanish version
The importance of connecting with patients also guided the decision to create a Spanish version of the program. Latinx people comprise the fastest–growing segment of the U.S. population and are projected to soon make up a quarter of the population, and breast cancer is the leading cause of cancer death among Hispanic women in the U.S.‡ However, “In Spanish-speaking networks, there isn’t that much reputable information [on breast cancer surgery] readily available, so it’s even more critical that we provide this to the Spanish-speaking community,” said Dr. Mendez, who is leading the Spanish translation of the Your Breast Cancer Surgery Program.
But, importantly, the translation needs to be more than a pure translation. It needs to be a culturally sensitive translation. “A literal translation just does not work. I can’t speak to Hispanic patients in the exact way I speak with English-speaking patients. I need to be careful about my choice of words. Certain subjects are taboo in Spanish-speaking cultures and not in others, so we need to be careful about what we say and how we say it,” Dr. Mendez explained.
Designing a web-based program
The decision to focus on a web-based program, rather than an initial design for print that is adapted for online reading, was made to keep in line with modern expectations of convenience and understanding of how patients gather information. The realm of patient education for breast cancer has mostly moved away from physical locations and materials, according to Dr. Sarantou, who is a site surveyor for the NAPBC and former member, ACS Patient Education Committee.
“At a site visit, when I would ask what kind of patient education materials [a breast center has], they would often show me a large three-ring spiral notebook of 300 pages. It was very thorough, but, for a patient, it is an overwhelming amount of information to take in.” The information overload also applied to the materials patients were given to read at home. Dr. Sarantou explained that patients often leave their diagnosis appointments with a bag full of literature, but there was little emphasis on making sure they understood their condition and telling them what was most important to know. “This program is meant to bridge the gap between digital and print, where the information is always available when a patient might need it,” Dr. Sarantou said.
The successful ACS Your Lung Cancer Operation Program, released in 2014 and available to view at facs.org/education/patient-education/skills-programs/lung, provided a model from which to iterate. It is based on a single printable PDF file and a longer, 30-plus minute video, but, according to Dr. Heneghan, a PDF and a longer video on a DVD are not the best options in 2021. The Your Breast Cancer Surgery Program’s divided sections and shorter video segments represent movement toward easy access to the specific information patients and their families seek. Although plans for the future do include producing a print booklet of the program’s contents for breast centers to offer their patients, the digital nature of the program still will pay dividends for patients through the use of QR (quick response) codes.
“Participants appreciated that the videos supported the text content on the same page, which was developed in partnership with the ACS Division of Integrated Communications. The QR codes will help to bring information in a print booklet to life by easily allowing print readers to access specific videos that relate to the information they just read in a convenient form,” Dr. Heneghan said.
Defining success
The Your Breast Cancer Surgery Program is an ambitious first step for the ACS into the world of fully web-based patient education, and its success will be measured both through data and evaluation of whether it meets the goals of ACS staff and the surgical task force.
Addressing the medical needs of patients through improving their knowledge with their breast cancer surgery journey is the primary focus of the program, which will have the concomitant benefit of improving the patient experience. “Sometimes we can get great outcomes with surgeon-focused education initiatives—lower mortality, decreased recurrence—but when we hyper-focus on outcomes, sometimes we are less focused on things that matter to patients,” like increasing their comfort or meeting them on their emotional level, Dr. Dietz said. She also noted that it will be important to disseminate news and links to the program through the networks of organizations that collaborated with the ACS to create this program, such as the ASBrS.
“You can only define success one patient or one family at a time,” Dr. Mendez said, noting that web analytics will be able to track its use and how far the program spreads. “Dissemination of information at all levels will be our success. Patients will learn through the program, and they will share it with other patients and their families, and there will be a snowball effect. I’ve always been a believer that knowledge empowers patients and families, so that would make a successful program in my eyes.”
The program also is designed to help community surgeons who may not previously have had access to quality patient education to offer to their patients. “One of my goals for this project was to help the physician in a community hospital who is caring for more than breast cancer, who is taking call, staying up at night doing general surgery cases and then performing breast cancer surgery during the day,” Dr. Sarantou said. “What do they need? How can we help? Many community physicians don’t have access to [patient] navigators who can help educate their patients and answer their questions. They’re very motivated and giving the best quality care they can, but sometimes they just might not be able to transmit the information the patients really need.” Part of the program’s success will be found in monitoring its use among community surgeons and other groups.
Ultimately, making the Your Breast Cancer Surgery Program available to partner organizations, hospitals, and surgeons so that they have an evidence-based resource to point their patients toward is the goal of the ACS Patient Education Program, according to Dr. Heneghan. “Our goal at the College and in the Patient Education Program is to make sure that these materials are accessible for outreach for all, so that surgeons, no matter where they practice, have access to quality education for their patients.”
*Breast Cancer Statistics. Centers for Disease Control and Prevention. Available at: www.cdc.gov/cancer/breast/statistics/index.htm. Accessed May 20, 2021.
†Mitchell S, Gass J, Hanna M. How well informed do patients feel about their breast cancer surgery options? Findings from a nationwide survey of women after lumpectomy and/or mastectomy. J Am Coll Surg. 2018;226(2):134-146.e3. Accessed May 20, 2021.
‡Power EJ, Chin ML, Haq MM. Breast cancer incidence and risk reduction in the Hispanic population. Cureus. 2018;10(2):e2235.
