Abstract: Pathway to Cure is a multimodal eHealth platform for oncology care providers and patients developed by a multidisciplinary team at the University of Nebraska Medical Center’s Fred & Pamela Buffett Cancer Center in collaboration with two rural cancer centers. The aim was to develop clinical pathways and associated education, as well as to increase clinical collaboration across the state to promote adherence to national evidence-based clinical guidelines for the care of young women with breast cancer. The 18-month project resulted in development of six clinical pathways and the Pathway to Cure website, which provides easy access to the pathways with links to associated national guidelines and nine continuing education accredited, expert-delivered webinars providing instruction on care specifically pertinent to younger breast cancer patients. Pathways evaluation planned at 6 and 12 months post-implementation will determine whether the pathways are meeting providers’ and patients’ needs and what modifications are needed to increase pathway use, function and guideline adherent practice.
Key Words: breast cancer, rural, eHealth, treatment guidelines, clinical pathway
In 2020, an estimated 325,000 women will be diagnosed with breast cancer in the United States.1 On average, 1368 diagnoses of breast cancer (invasive/in-situ) occur annually in Nebraska. Among these, approximately 15% occur in women younger than age 50.2 Most of these young women live in the three most populous urban Nebraska counties, while the remaining women live in one of the other 90 Nebraska counties across 76,000 mostly rural square miles, served by six cancer centers.3 Thus, for many rural oncology care providers, breast cancer treatment for women younger than 50 years occurs infrequently enough that maintaining expertise and resources for this population is challenging.
Treating breast cancer in younger women poses unique challenges. Although young women typically present with more aggressive breast cancer than older women,4 the stable-to-decreasing breast cancer mortality in Nebraska in recent years2 necessitates planning for decades of survivorship. In turn, increased survivorship increases the importance of appropriate initial treatment planning and support of young women at diagnosis. Areas in which young women have unique needs because of their age, and thus potentially decades of cancer survivorship, include surgical decision-making, genetic testing and counseling, reproductive care and fertility, cancer-related distress, lymphedema prevention, and weight management.4
Surgical decision-making discussions led by evidence-based clinical guidelines is likely to reduce the increasing rate of contralateral prophylactic mastectomy (CPM) (ie, removal of the breast unaffected with cancer at the time of primary mastectomy for the affected breast) among young women. Reasons given include worry about cancer recurrence and a desire for breast symmetry, despite no survival benefit of CPM for average risk women.5 Nationally, from 2004 to 2012, CPM increased among women between 22 and 44 years of age from 10.5% to 33.3%.6 Five midwestern states, including Nebraska, had the highest rate of CPM, with 42.8% to 48.5% of young women undergoing CPM from 2010 to 2012.6 CPM potentially increases risk of surgical complications and risks associated with reconstructive surgery, which may delay the start of adjuvant therapy.7 Despite these risks, young women express confidence and independence in their decisions to undergo CPM and less worry about recurrence afterward.8 But, regardless of the surgical treatment decision, whether for the primary cancer or prophylactic mastectomy, young women express regret if they do not obtain sufficient information about treatment alternatives and potential adverse effects.9
The National Comprehensive Cancer Network’s (NCCN) guidelines indicate that women younger than 50 years diagnosed with breast cancer should undergo genetic testing,10 however, “the clinical need for genetic testing may not be adequately recognized by physicians.”11 Although genetic testing has increased among women with breast cancer younger than 40 years,12 women between 41 and 50 years of age are twice as likely as women younger than 40 years to not have genetic testing recommended.13 Nationally, about 50% of high-risk women receive a recommendation for genetic testing from their physicians.11,13 This raises a concern because a young women’s genetic predisposition greatly affects early treatment decisions.
Young women also report being ill-informed about fertility issues following chemotherapy,14 despite NCCN guidelines indicating that all premenopausal women should be informed of the potential impact of chemotherapy on fertility and engaged in a discussion about their future childbearing.15 Discussion is also needed regarding the role of ovarian suppression and estrogen-receptor modulators in treatment, which are particularly overlooked among women older than 35 years and among those with children at the time of diagnosis.16 Together, with body image especially post-mastectomy, sexual function and fertility issues raise concerns for young women moved into menopausal or experiencing menopausal symptoms associated with treatment.17
Distress is recognized by the NCCN as a significant outcome of cancer diagnosis and therapy.18 Young women with breast cancer experience distress from multiple sources including worries and lack of information about fertility, surgical decision-making, and body image.14,17,19 Access to psychological care (especially in rural America), resource insufficiency, and patient acceptance are barriers to distress-management for 70% to 80% of cancer survivors.20 Unmanaged distress is associated with long-term psychological issues, such as depression, anxiety, and poor quality of life.21 Characteristics of people with cancer that make them more vulnerable to distress include young age, female gender, being unmarried, and rural residence.22-25
Physical activity decreases during treatment, compounding the problem of weight gain that may be more significant in younger than in older women and brought about by chemotherapy and transition to menopause.26 Reduced physical activity and weight gain also affect women’s body image and quality of life. Young patients require more information than older women about these topics shortly after diagnosis to influence treatment decision-making and set realistic goals and expectations for prevention, when possible.17,26
Nationally recognized gaps in the care of young women with breast cancer may make it more challenging for oncology clinicians in the rural United States to maintain competency in the management of these patients. In response to these unique care needs, a collaborative project was undertaken in 2018 led by the University of Nebraska Medical Center’s Fred & Pamela Buffett Cancer Center (FPBCC). FPBCC, located in Omaha, is Nebraska’s only National Cancer Institute-designated cancer center. Original collaborating cancer centers include Great Plains Health Callahan Cancer Center in North Platte, Faith Regional Carson Cancer Center, Norfolk, and CHI Health Regional Cancer Center in Grand Island, NE. The purpose of this project was to improve the efficacy and efficiency with which oncology care providers recognize and systematically address physical, psychosocial, and decision-making needs of young breast cancer patients in rural Nebraska and to support NCCN guideline adherence, while also minimizing burden to patients and medical systems. This article details the development and implementation of this project and observations prior to formal analysis of implementation outcomes.
Pathway Design
Although NCCN and others provide national guidelines for the treatment and supportive care of women with breast cancer, no guidelines specifically address the unique needs of young diagnosed women. Clinicians must take the initiative to explore multiple guidelines and resources on cancer treatment with those covering distress, survivorship, etc, to weave together a plan of care for their youngest breast cancer patients. Thus, for this project, the clinical pathways were designed with clinical implementation as paramount, leading us to conceptualize a pathway design that imbedded links to pertinent sections from multiple NCCN breast cancer treatment, survivorship, and other guidelines, as well as recommendations from the American Cancer Society and the American College of Sports Medicine (Table 1). 
It was determined that, since the focus of the project was on timely and appropriate care of young women with breast cancer, the pathways would be aimed at health care providers as opposed to patients. A search of the professional literature as well as Google searches were performed to explore the variety of clinical pathway formats. Designs were drafted and shared between the co-principal investigators (co-PIs). The goal was to create a pathway that was esthetically pleasing to health care providers, easy to use, ideally one page, and provided linkage to NCCN and other applicable guidelines. We identified that a vertical “four-pillar-like” design, organized according to the sequence of events from diagnosis through treatment, was the preferred pathway framework. Inspiration was also provided by a Gantt chart27 style pathway for patients, designed by Northwestern University Feinberg School of Medicine Center for Business Models in Healthcare with whom we consulted (Christine Weldon, director, phone call/email, April 30, 2018). Through subsequent iterations, our team determined that rather than two pathways as designed by the Northwestern group for “surgery first” or “chemotherapy first,” our pathways would need to be tumor-biology specific due to the treatment nuances associated with each for young diagnosed women to appropriately guide medical oncologists and surgeons. Thus, six pathways were created: (1) ERPR+HER2- neoadjuvant; (2) ERPR+HER2-surgery first; (3) ERPR+ or HER2+neoadjuvant; (4) ERPR+HER2+surgery first; (5) ERPR-HER2-neoadjuvant; and (6) ERPR-HER2-surgery first. Pathways are consistent in the recommendations for referral to resources applicable to young women such as genetic counseling, distress, and fertility management, while differing in treatment recommendations based on tumor biology. Color coding of the pathways’ titles link pairs of pathways that address adjuvant and neoadjuvant care for the same tumor biology. Links to appropriate NCCN and other guidelines were inserted throughout each of the one to one-and-a-half page pathways to support the evidence base of the recommendations and make the guidelines easily accessible to pathway users (Table 1). Checkboxes mark each action on the pathways to aid communication regarding what has and has not been addressed (Image 1). 
Pathway Evaluation and Modification
It was planned that all specialists who participated in the development of the Pathway to Cure educational webinars would also participate in evaluation of the clinical pathways prior to implementation. This plan proved not to be feasible due to the availability of the specialists to carry out this process and the lack of familiarity with breast cancer treatment beyond their specialty with which to make a knowledgeable contribution to pathway modification. Therefore, pathway evaluation was undertaken by uploading the pathways to the Pathway to Cure website as well as distributing the pathways by email to medical oncologists at distant clinics. Pathways were also distributed during weekly multispecialty breast conference to our local medical oncology, surgery, and radiation oncology team members who had not yet been involved in the pathway development to obtain their feedback. Evaluations were guided by criteria put forth by Kinsman et al,28 asking respondents to answer questions including whether the evidence-based nature of the pathways, and their perception of the pathway’s ability facilitated translation to patient care.
Evaluations were returned by three physicians of the 12 surveyed (25% response rate). Responses ranged from no changes needed to 23 recommendations for review or modification. Suggested modifications fell into categories of editorial, treatment-related, and content-related (Table 2). Treatment-related recommendations for change often pertained to clinical practice variation and questions regarding the evidence supporting the recommendation. Content-related recommendations for modification centered around addition or deletion of supportive care visits and the feasibility of the physician’s clinic system carrying out the recommended consultation or test given the resources available. The co-PIs evaluated the necessity for pathway modification based on the project goals and applicability across the rural and urban collaborating clinics. Differences were discussed between the medical oncologist team lead and physicians making the recommendation when clarification of the request or disagreement with the recommendation occurred so that these differences could be collaboratively resolved. The research project coordinator, assistant, and Co-PI worked to modify and check the pathways for accuracy. Final accuracy checks were performed by the research project coordinator and the team again checked for accuracy upon the programmer’s uploading each pdf pathway to the Pathway to Cure website. Subsequently, in recognition of the days needed to modify and verify the pathways, a page was added to the Pathway to Cure website for future clinical treatment updates in the process of being added but not yet added in the pathways to ease the burden of updating. 
Pathway to Cure Website Development
The Pathway to Cure website was developed to house the clinical pathways and educational content in an easily accessible manner.29 Website content was developed to target oncology care providers; however, didactic content on each webpage is also suitable for patients. Patients seeking in-depth understanding have open access to the webinars and pathways. The website contains the six clinical pathways as printable pdfs, plus nine continuing education webinars focused on topics pertinent to the care of young women with breast cancer.
Available from the drop-down menu on Pathway to Cure are webinars on the following topics:
- Introduction of the roles of a typical breast cancer care team
- Medical and surgical treatment decision-making
- Endocrine therapy
- Radiation therapy
- Genetic testing and counseling
- Lymphedema risk, prevention, and treatment
- Cancer distress management
- Survivorship issues
- Weight management and fitness before, during, and after breast cancer
- Reproductive and sexual wellness for young women throughout diagnosis and treatment
Attention was paid to the aesthetics of the Pathway to Cure website with the intention that it appear professional, trustworthy, and represent the collaboration between the FPBCC and the rural cancer centers in which their patients trust. Therefore, all collaborating cancer centers are represented on the introductory page and neutral colors were chosen for the site as opposed to branding the site for any one institution. Drop-down tabs take users to pathways, webinars, continuing education credit information, and research study opportunities available through the FPBCC. Upon launch of the pathways on the website, four of the planned nine webinars were complete and available on the website as planned. The strategy was to maintain health care provider interest in the website and maximize repeat visits over time by announcing the launch of the remaining webinars monthly.
Webinars were professionally developed with the assistance of the University of Nebraska Medical Center’s (UNMC) e-learning department. A multidisciplinary team of expert clinicians specializing in the care of people with cancer (eg, medical, surgical, radiation oncologists; a physical therapist; a genetic counselor; a psychologist; an advanced practice oncology nurse; an exercise physiologist; and an ob/gyn physician) from the FPBCC were identified and agreed to participate in webinar development prior to obtaining funding for this project. Following funding, experts were individually provided with a brief outline of potential webinar content and asked to develop a 30- to 45-minute presentation addressing the background, latest evidence-based therapy, and guidance for clinicians with specific attention to and modification of therapy for women younger than 50 years with breast cancer. We hypothesized that visual and verbal webinar presentation of latest evidence by experts in the field that supports pathway content, and the NCCN and other clinical guidelines to which the pathways direct, would enhance health care providers’ confidence and likelihood of voluntary pathway adoption (example webinar on decision making30).
The project coordinator worked closely with each clinician to develop their PowerPoint presentation, including learning objectives and references. Clinicians recorded narration of their PowerPoint slides in a professional sound booth accessed through the UNMC e-learning department. E-learning performed post-production enhancements of each webinar to ensure professional quality. To enhance the feeling of personal connection with the clinical experts for users of the Pathway to Cure website, the co-PI video recorded question-and-answer sessions with each expert to introduce their webinar on the site. Further, to add variety into the educational offerings, several experts (ie, surgery, radiation, ob/gyn) provided their content completely via a 15- to 45-minute interview with the co-PI.
Webinar viewers are asked to enter their email, professional role, and whether they wish to claim nursing or medical continuing education (CE) credit. These data allow us to track the webinar use as well as incentivize busy professionals with free CE. Additionally, reports from Google Analytics were developed to monitor “hits” on the website overall.
The entire process—from pathway and website design and development to health care provider evaluation—took approximately 1.25 years (with PIs allocated at 5% and project coordinator at 75% beginning 8 months into the project), followed by one month of final pathway modification following evaluation.
Discussion
The goal of this project was to develop clinical pathways to guide timely, appropriate, and guideline-adherent care for women younger than 50 years who are newly diagnosed with breast cancer.
Challenges included identifying a pathway style that would be visually appealing and easy to use for busy physicians and other oncology health care professionals. Multiple styles of pathways exist and are typically designed for the needs of a single health care system,28 while our pathways needed to address the practices of four health care systems. Although physician participation in pathway evaluation was limited in this project, seeking this input was invaluable to identify variability in usual care and resources available at the varied oncology practices. Not only are the practices participating in this project geographically distant, but their rurality lends itself to few permanent physicians and multiple rotating physicians that treat patients on certain days of the week. Creating pathways designated by tumor biology and guided by NCCN guidelines minimized physician practice variability in the pathway while still allowing for patient and physician decision-making applicable to each patient’s circumstances.
Pathway availability and reach was also a consideration since the collaborative health care systems are hundreds of miles apart. Additionally, although the pathways were designed for physicians use, it was our goal to make the pathways accessible to patients as well, so they could follow along with their care, identify possible options, and question practice that diverged from the pathway. Therefore, housing the pathways on the Pathway to Cure website was intended to address the challenge of reaching both physician and patients. Online education has increased in popularity and interest has further exploded with the current pandemic.31 For rushed professionals, the availability of evidence-based, CE webinars delivered by experts in the field of breast oncology and supportive cancer care is intended to address health care providers’ need to stay current on latest practices while providing support for pathways use.
Challenges and Limitations
Several challenges presented throughout development of the clinical pathways and Pathway to Cure website. The most significant challenge was keeping distant clinics engaged in the process of pathway evaluation. We attempted to overcome this challenge by the first author/project coordinator visiting clinics in person, followed by intermittent phone updates, and approximately 6 months later an introductory webinar presentation to launch the website. It was difficult, however, to maintain interest in a project that may have seemed to create more work in an already busy schedule.
Additionally, it was challenging to identify a qualified project coordinator for the project, which we eventually did 8 months after funding, and there was significant physician turnover at the rural clinics resulting in one clinic leaving the project.
Conclusion
Completed pathways were launched on the Pathway to Cure website and announced to our oncology health care team and that of the two participating rural clinics on September 1, 2019. The next pathways evaluation is planned at six and 12 months after implementation to determine whether the pathways are meeting providers’ expectations and patients’ needs for participation in their care as well as whether further modifications would increase pathway use, function, and guideline adherent practice.
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