Posted on December 22, 2022

By Zoë Christopher, MA (she/her), Program Officer & Resource Liaison

Digital Health and PROs in Breast Cancer Research and Care: Patient Perspective

Ideally, healthcare decisions for a breast cancer patient are made by a well-informed patient in partnership with their doctor. The patient needs their doctor to give them all available, accurate information, and the doctors should have as much information from the patient’s perspective as possible.

BCAction has always advocated for the inclusion of reporting from patients’ lived experiences when science is assessing side effects, treatment outcomes, and drug efficacy. For example, after aromatase inhibitors (AIs) had been on the market for a while, we were getting calls from concerned patients: they’d been prescribed an AI but were not prepared by their doctors, who were likely not prepared by the pharmaceutical company, for the side effects. Our survey of more than 600 people being prescribed AIs made it possible for hundreds of other patients to make more informed decisions about taking them. So, it was refreshing to see presentations at this year’s San Antonio Breast Cancer Symposium (SABCS) addressing the value of patient-reported outcomes, or PROs.

To better understand the role of PROs, I attended a panel discussion on Digital Health and PROs in Breast Cancer Research and Care. I learned that, while PROs may offer better data for addressing disparities, and can be aggregated in new and more efficient ways through digital tools, they must be collected with the support of social workers and psychologists, implemented with cultural competency alongside expanded clinical infrastructure.

When administered in multi-lingual, level-appropriate, and culturally-aware formats, PROs can be used to address the individual and collective health status of under-resourced groups including children, older adults, those with disabilities, and BIPOC people thereby providing an opportunity not only to address the needs of individuals but also identify potential disparities across groups. Studies reveal significant differences in the lived experiences of Black, Hispanic, Asian/Pacific Islanders, and white patients.

In the post-active treatment and survivorship phase of care, PROs are critical in identifying and understanding late and long-term effects of treatment, identifying unmet needs, and determining if patients are receiving appropriate follow-up care. Several study models for reporting were presented, each geared to specific patient populations such as advanced geriatric cancer patients; 24-hour monitoring for treatment-related toxicities; assessment of unmet needs/impact for metastatic breast cancer patients; and a web-based, symptom-monitoring, and self-management system for adolescent and young adult patients. According to Shoshana M. Rosenberg, ScD, MPH at Weill Cornell Medicine, these models contribute to the growing evidence that the routine inclusion of PROs into clinical practice is associated with improved symptom management, better patient-provider communication, and better outcomes. PROs, as opposed to clinician evaluations, reflect the patient experience and can be used in research, for tailoring and improving care, and for quality assessment.

The field of digital health includes wearable devices, telemedicine, mobile health, and health information technology. Digital formats for gathering PROs are designed to make collection easy and reliable, and can often be completed at home before visits. But several models were presented that have been used in cancer centers, and I found the detailed questionnaires impressive. For example, Duke Cancer Center developed a ‘stress thermometer’ meant to gauge the severity of stressors experienced by patients, and included practical issues such as child care, housing and transportation; physical stressors related to perceived appearance and body image; substance use/abuse; ailments; and spiritual and religious concerns.

In order to maximize the benefits of PROs, clinical infrastructure needs to be expanded. The models being tested are detailed and many of the questions being asked of patients are inherently personal. In my experience, doctors are not known for their communication skills. They are often very good at providing specific information, but they aren’t often skilled at managing psychological material or unpredictable patient responses.

Dr. Oluwadamilola (Lola) Fayanju, MD, MA, MPHS, FACS of the Perelman School of Medicine at the University of Pennsylvania stressed the need for social workers to be an integral component of the patient’s support network, starting early with primary care. Relationships and trust have to be cultivated so that all patients feel safe enough to reveal the truths of their experiences. Doctors need to know something about the life of the patient and who they’re treating.

We need to prioritize social workers and psychologists. Fayanju suggested that they petition breast cancer centers for reimbursement of non-medical staff, and that their reports and information become part of the patient’s centralized medical record. Psychosocial support must be integrated fully into the breast cancer patient care continuum.

Joining the panel discussion, Research Patient Advocate Patty Spears, BS brought the patient perspective to the topic of designing PROs and their place in clinical trials. In study design, patients should be involved in early discussions. Investigators need to hear what’s important to patients at the beginning and throughout the trial. According to a survey conducted by Spears at the Lineberger Comprehensive Cancer Center at the University of North Carolina, patients emphasized the importance of questions that are relevant and meaningful to them and to other patients, that they know why a question is asked, and they know their responses are being used in their personal care. They also reported that the number of questions and frequency of reporting are important, that the results are reported back to patients, and that they are assured their voice is valued. All of this entails a level of sensitivity on behalf of the clinician.

I remember attending a panel discussion one evening at SABCS a number of years ago, where a handful of advocates were talking about what a difference it would make if patients were included in the design of clinical trials, how the goal of a trial might be determined by what was meaningful for the patient. It was a pie-in-the-sky conversation over our catered dinner and considering how slowly the wheels of the medical-industrial complex turn, I don’t think any of us expected it would happen anytime soon. But it’s encouraging to know that the effort is being made to hear patient voices. We’ll need time and a lot more clinicians trained in cultural competency and psychosocial management to help patients navigate a breast cancer diagnosis but the wheels are turning.