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The Paradoxical Benefits Of A Web App For Cancer Patients

This article is more than 6 years old.

Dr. Ethan Basch wants to improve communication between patients and their oncologists. An approach he’s developed—and he’s been working on this problem for over 15 years, with collaborators—involves a web-based tool, or app, by which cancer patients report symptoms at least weekly. This kind of intervention can be surprisingly powerful. He and colleagues have previously reported that for patients with advanced tumors, the Symptom Tracking And Reporting (STAR) tool improves quality-of-life measures, reduces emergency room visits by 7%, and lessens hospitalizations.

It turns out that when patients with advanced cancer use the symptom-reporting app, they live longer.  In a prospective, randomized “open label” study of 766 people with advanced urologic, gynecologic, breast or lung cancer treated at Memorial Sloan Kettering Cancer Center (MSKCC) in New York, median overall survival of patients assigned to use the STAR app was 31.2 months, vs. 26.0 months in the control arm. This survival difference was highly significant in patients with limited life expectancy.

Overall, use of the STAR app added 5 months of life in this trial of advanced cancer patients. Basch, a medical oncologist and professor now at the UNC Lineberger Comprehensive Cancer in Chapel Hill, North Carolina, reported the findings at a plenary session of the American Society of Clinical Oncology (ASCO) annual meeting in Chicago and, with colleagues, in JAMA. We spoke at the meeting.

I asked Basch if the app might diminish patient-doctor relationships, by reducing person-to-person chats. He acknowledged the concern, and said: “One of the worries we have about e-health is that it will make care less personal. Even though this tool is based in technology, the effect is to bring patients and doctors together.”

“This tool brings us closer to the country doctor model,” Basch said. “We’re in touch with our patients on a regular basis, he said. “As an oncologist, it makes me feel like my patients aren’t ‘out of sight and out of mind.’ When my patients are using this tool, I worry less that they’re going to experience something and I won’t know about it,” he said. “If patients are experiencing a problem, we can reach out.”

This web tool lowers barriers to communication ,” Basch said. “And that’s a good thing. Because a lot of patients, especially in some poor and rural areas, are reluctant to pick up the phone and call,” he said. “People show up in clinic after they’ve been experiencing symptoms for days. Some go to the emergency room, when the problem might have been resolved by earlier communication. This tool reduces that. It keeps doctors aware of what’s going on with our patients, so we can intervene sooner.”

Doctors can be oblivious patients’ experiences. “From other literature, we know that clinicians are unaware of about half of patients’ symptoms,” Basch said. There are many reasons for this, from his perspective as an oncologist: “At visits, we miss a lot. Patients are reluctant to tell us things. Patients are reluctant to disappoint us. We don’t ask enough. We don’t have time. We don’t systematically interrogate how patients are doing,” he said. This tool helps with all of this. “Communication is the intervention.”

“The technology has evolved,” Basch reflected. “When we first started doing this, we were handing patients industrial-sized tablets. We asked them to check in at airline-style kiosks installed in the waiting rooms.” For the trial in the new report, cancer patients enrolled between 2007 and 2011 at MSKCC, where Basch worked at the time. Median follow-up is now 7 years.

In the randomized trial, patients using the STAR app may have benefited from these four components in their care: patients were asked to use the web tool to report on 12 common symptoms before and between visits; they received weekly reminders to report on their symptoms; nurses got email alerts when symptoms changed; when patients came in for visits, oncologists were given printouts of the patient-reported symptoms.

How does a web questionnaire extend survival? In his presentation, Basch mentioned three possible and non-exclusive explanations: First, when clinicians received alerts of symptoms, they’re more likely to intervene before serious and potentially irreversible complications occur; second, if patients’ symptoms are addressed earlier, they maintain a greater level of function, which correlates with improved survival; third, when side effects are managed pro-actively, more patients take prescribed treatments for longer (and they may be more compliant with those treatments), which yields a survival benefit.

“One thing we’ve observed consistently since we began this study, 10 years ago, is that people with no previous or limited on-line computer experience are enthusiastic about using it,” Basch told me. Older cancer patients, and those who lacked computer skills, appear to benefit most. “Using the app has changed some patients’ relationship with technology,” he said. Basch recalled a patient who came in with a grandchild. “The grandchild said, ‘grandpa just got an email account.’”

Basch noted that improving survival was not a primary goal or study endpoint. “All of the patients had advanced or metastatic cancer, so the goals were not for cure. We published on the quality-of-life benefits. Sadly, we had to wait a long time to see the survival benefit, until two thirds of the patients had died, but after 10 years, the survival benefit became clear.”

These observations suggest that the web app can have bonus effect on health literacy , Basch said. Patients who were not previously confident using computers may benefit from access to on-line information, and from enhanced communication with their providers, he said. “We bridged a gap.”

“When I set out to do this study, I never thought that survival would be impacted,” Basch told me. “The primary outcome was quality of life. Then we created a statistical plan to look at survival and it panned out, very clearly.”

What remains to be seen is if the STAR app and others like it in development can be applied so successfully in communities and hospitals that are less-well staffed than MSKCC. As with cancer drugs that initially appear promising at cancer centers—but then don’t work as well elsewhere—the consequences of this electronic intervention need “real world” follow-up. It could be that some doctors will rely on electronic information instead of conversations with patients, and not really review patient-reported symptoms. Nurses monitoring the electronic symptom reports might not adequately alert doctors when concerns arise.

Meanwhile, Basch and colleagues have developed a newer tool for the National Cancer Institute, called PRO-CTCAE. “There are many places using systems like this now.” But the actual software we used has only been for research purposes, he indicated by email. “It would be terrific if there were a freely-available system that seamlessly integrated with electronic medical record systems.”

“The next step is to see how this kind of tool can be integrated into the diversity of oncology practice types -- smaller, larger, community, academic, rural, urban. We're directly addressing this in our new national study which will begin accrual this summer,” Basch added.

The upcoming trial, “Electronic Patient Reporting of Symptoms during Outpatient Cancer Treatment: A US National Randomized Controlled Trial” is sponsored by the Patient-Centered Outcomes Research Institute (PCORI) and will be carried out through a consortium of practices in the Alliance for Clinical Trials in Oncology.

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