Web-based system for self-reporting symptoms may help patients live longer

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Published: 4 Jun 2017
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Prof Ethan Basch - Lineberger Comprehensive Cancer Centre of the University of North Carolina, USA

Prof Basch presents, at a press conference at ASCO 2017, findings from a randomised clinical trial of 766 patients showing that a simple, web-based intervention can have major benefits, including longer survival.

Read the news story and watch the video interview for more.

On behalf of my fellow authors, as well as the patients and clinicians who participated in this study, I’m pleased to present the overall survival results of our randomised controlled trial assessing patient reported outcomes for symptom monitoring during routine cancer treatment. Two of my co-authors, Drs Deal and Dueck are here in the room today who were the lead statisticians on this study. I’m also pleased to note that the results of this trial are being published online today in JAMA simultaneous with this session now. As a final note before I start I would note that, like the prior study, this study was also funded both by public funding from the NIH and from foundation funding from ASCO, again underlying the importance of these mechanisms for funding important patient-centred research.

Symptoms are common, such as nausea, pain and fatigue, among patients with metastatic cancer but unfortunately often go undetected by doctors and nurses until they become severe and physically debilitating. This is because between visits patients are often hesitant to call the office until problems become severe. Even at clinic visits, amidst many competing topics and limited time, symptoms are often not fully communicated between patients and their doctors and nurses. So we’ve identified a communication gap. We wish that doctors and nurses were in more systematic communication with their patients about symptoms.

We hypothesised that having patients report their own symptoms using an online system with this information conveyed to their clinicians would prompt those clinicians to intervene earlier, thereby improving symptom control and downstream health outcomes.

This is a web survey system that we developed and taught patients to use for self-reporting symptoms in this trial. Patients could use it from home between visits and also in clinic waiting areas prior to seeing their oncologist. The system automatically triggered email alerts to nurses any time a severe or worsening symptom was reported by a patient such as in the example on this slide. The nurse could then use this information to take clinical actions between visits. In addition the system generated reports showing the trajectory of symptoms over time that oncologists could use at visits to lead discussions with their patients and to guide symptom management.

We tested this web-based self-reporting system in a clinical trial in which 766 patients receiving treatment for metastatic cancer at Memorial Sloan Kettering Cancer Center were randomly assigned to one of two arms. In an intervention arm patients used the web-based system to self-report twelve common symptoms prior to visits in clinic waiting areas and between visits from home. Weekly emails were sent to patients reminding them to report. Email alerts were triggered to nurses for severe or worsening symptoms. Reports showing symptom trajectories were printed for oncologists at visits. The control arm of the study was standard symptom monitoring consisting of usual discussions at visits or calls between visits at the discretion of patients. Patients remained on the study until discontinuation of all cancer treatment, hospice or death. Then we measured a host of clinically meaningful outcomes.

Compared to standard care patients who self-reported symptoms experienced multiple statistically significant clinical benefits. 31% of patients experienced better quality of life and better physical functioning. There was a 7% reduction in emergency room visits. Patients were able to remain on potentially life prolonging chemotherapy for an average of two months longer duration. But perhaps the most notable finding in the study is that, compared to standard care, median overall survival was five months longer among patients in the self-reporting arm which is almost a 20% increase in survival time for these patients. Another way to think about this is five year survival - at five years 8% more patients were alive in the self-reporting group.

Why might this survival benefit have happened? There are three potential drivers supported by evidence from this trial. Number one, this system yielded more responsive care. It alerted clinicians in real time about symptoms as they emerged. It prompted clinicians to early action to manage problems before they caused serious complications. Number two, by controlling symptoms better this system kept patients more physically functional and kept them from becoming deconditioned or immobile which we know from multiple prior studies has a strong association with better survival. Number three, this system enables better management of chemotherapy side effects. In oncology we often are limited in our ability to give life-prolonging treatment because people don’t tolerate it well. Being able to administer treatment longer can be beneficial and in this study patients who are self-reporting received two months longer duration of chemotherapy.

We are involved with ongoing work testing the next generation of systems to make it easier for patients to communicate with their care teams. We are conducting national studies to figure out how best to integrate these tools into oncology practice and we are building similar tools to improve our understanding of patient symptoms in cancer drug development.

In conclusion, integration of patient reported symptoms and to care for patients with metastatic cancer is associated with clinically meaningful benefits including quality of life and overall survival. This approach should be considered for inclusion in standard symptom management as a component of high quality cancer care. Thank you very much.