How ‘E-reporting’ Daily Symptoms Can Improve Black Cancer Patients’ Well-Being

Patients with advanced cancers who checked in daily with their care teams electronically gained a better quality of life, a new study concludes. This “patient-reported outcome” (PRO) strategy did not improve patients’ survival, the study found. But it did help their care teams spot and treat issues such as pain and frailty earlier, easing daily symptoms. This type of intervention could be particularly impactful for Black patients, who often face disparities in access to care and may experience symptom burden differently.

“Doctors and nurses are often unaware of symptoms and side effects that can worsen for cancer patients between office visits, leading to complications and unnecessary suffering,” lead study author Dr. Ethan Basch explained. He’s a professor of medicine and chief of medical oncology at the University of North Carolina School of Medicine.

PRO “was developed to enable patients to report their own symptoms and side effects, and our study showed that PRO keeps care teams informed so that they can intervene promptly to help patients,” said Basch, who also directs the Cancer Outcomes Research Program at UNC Lineberger in Chapel Hill.

His team published its findings recently in the journal Nature Medicine.

PRO works by electronically providing patients with easy-to-understand checklists they can use to rate daily issues such as pain or mobility. Patients send their feedback, via computer or smartphone, to their care teams, all from the comfort of their homes.

But are these technologies really helping patients, and are they accessible to all patients, including those in underserved communities?

To find out, the new study involved nearly 1,200 U.S. patients with metastatic (later-stage) cancers, cared for at 52 oncology practices across 26 states.

About half of patients were monitored with the help of the PRO system, while the other half got usual care, checking in with their care teams in the traditional way.

The patients’ average age was 63. In all, 26% lived in rural areas and 17% had never used the internet. Critically, the study population included diverse representation, which is essential for understanding how interventions like PRO might impact different communities, including Black patients.

Use of PRO had no impact on how long patients lived, the study found.

However, the system did seem to boost a patient’s quality of life.

Among the findings:

• Delays in deterioration of physical function. Patients using PRO began to falter in their physical abilities at a median of 12.6 months, versus 8.5 months for those monitored in the traditional way. (Median means half faltered sooner, half later.)
• Better quality of life. Patients using PRO saw a significant (28%) improvement of their quality of life that lasted an average 15.6 months, compared to 12.2 months for folks not using the technology.
• Fewer emergency room visits. People using PRO required an average 6.1% fewer trips to the ER, and had a 16% longer period before their first ER visit, compared to folks using traditional care.
• Better sense of control. Patients using PRO tended to say that they felt more in charge of their well-being (84% saying so), while 77% said it improved communication with their care teams. The vast majority (91%) said they’d recommend PRO to other patients.

The Importance for Black Patients

These findings are particularly relevant for Black patients with cancer, who often experience disparities in cancer care and outcomes. Black Americans are more likely to be diagnosed with certain cancers at later stages, and they may face barriers to accessing timely and appropriate treatment. PRO systems could potentially help bridge these gaps by:

• Improving Communication: PRO can facilitate communication between Black patients and their care teams, enabling patients to report symptoms and concerns that might otherwise go unaddressed. This is especially important given potential cultural or systemic barriers that may hinder open communication in traditional healthcare settings.
• Early Detection of Symptoms: By allowing for daily monitoring, PRO can help detect worsening symptoms earlier, allowing for prompt intervention and potentially preventing serious complications. This is crucial for Black patients who may experience delays in diagnosis and treatment.
• Empowering Patients: PRO can empower Black patients to take a more active role in their care, giving them a sense of control and improving their overall quality of life. This can be particularly important in addressing feelings of vulnerability and disempowerment that may arise from navigating the healthcare system.
• Addressing Health Disparities: By improving communication, facilitating early intervention, and empowering patients, PRO has the potential to mitigate some of the health disparities experienced by Black cancer patients.

Basch noted that the PRO system used in the study did not rely on physicians, who are already often overloaded with paperwork.

“PRO largely circumvents physicians and is managed by nurses and/or patient navigators, whose jobs often encompass symptom management and care coordination,” he explained in a UNC news release. “The PRO systems have also proven very easy for patients to use, in terms of technical ability.” However, ensuring equitable access to technology and digital literacy training for Black patients will be essential for the successful implementation of PRO systems in this population. Furthermore, culturally sensitive design and implementation of PRO tools will be critical for maximizing their effectiveness among diverse populations.

The PRO system performed well across a variety of cancer types. While this study focused on patients with advanced cancers, it’s hoped that future trials will examine its performance among people battling cancer in its earlier stages, Basch said. Further research is also needed to explore the specific impact of PRO on diverse populations, including Black patients, to ensure that these interventions are effective and equitable.

“We certainly hope researchers will take an interest in establishing more studies to provide evidence of that benefit,” he concluded.