We conducted a study to ask a simple question – whether providing patients with an online tool to report their symptoms between visits, that would convey messages to their nurses if they experienced severe or worsening symptoms, would improve clinical outcomes. To ask this question we designed a randomised controlled trial in which 766 patients were randomly assigned to one of two study arms. In the intervention arm patients were given access to an online tool where they could report twelve common symptoms that patients experience during chemotherapy. When patients were at home during their chemotherapy and they reported a severe or worsening symptom it would trigger an automatic email alert to their nurse and their nurse could use that to call the patient or intervene. In addition, at follow-up clinic visits with their oncologists those patients’ symptoms would be printed out longitudinally so that the oncologist could see the trajectory of symptoms over time and use this for discussions and symptom management.
In the control arm patients received the usual standard care which consists of us discussing symptoms with patients at visits or the patient can pick up the phone between visits or send us an electronic message about their symptoms. But the impetus or the work is to the patient to take the initiative to contact us.
Patients remained on this study throughout chemotherapy for advanced or metastatic cancer; they stopped the study when they stopped chemotherapy or if they died or went to hospice. We measured a host of different clinically meaningful outcomes. The first outcome that we measured was emergency room visits. We found that when patients were reporting their own symptoms and alerts were sent to their nurses it allowed us to control their symptoms better and intervene early and it kept people out of the emergency room. There were 7% fewer emergency room visits.
We then looked at quality of life and found that 31% of patients had better quality of life. We also looked at duration of chemotherapy and we found that people who were self-reporting, compared to standard usual care, were able to tolerate staying on their chemotherapy on average two months longer, probably because their side effects were being better managed. Taken together these different factors likely account for the most striking finding in this study which was the finding around overall survival, how long patients lived. We found that in the patients who were self-reporting compared to usual care median overall survival was lengthened by five months, so people lived five months longer on average when they were self-reporting. We also looked separately at five year survival, meaning we looked at the percent of patients who were alive at five years, and found that in the self-reporting group 8% more patients were alive in the self-reporting group compared to usual care.
The first question that comes to mind is are we surprised by this, that having patients update their own medical records, in a way, and give more of an insight into their personal life, their symptom management, that helps with symptom management?
To me as an oncologist I recognise that patients with cancer have symptoms that are often terrible. They can have symptoms related to their cancer, they have side effects related to their chemotherapy and we know from prior research that as oncologists we’re unfortunately unaware of up to half of our patients’ symptoms. So there is a communication gap and it’s not a surprise that by being able to monitor symptoms better we can improve outcomes. But what’s surprising in this study is the magnitude of these benefits and that survival was actually improved by this intervention.
It does have elements of the concierge doctor, that by being more personally involved in a patient’s journey that they get not just more involved care but an extension in their own quality of life. Would you see that as a similar comparison?
I think that’s right, to some extent. This tool brings us closer to our patients. It means that right now, as I’m speaking to you, I have patients who I treat who are at home and maybe suffering. Having this kind of tool gives us both the confidence to know that if my patient is experiencing a problem they can communicate that and my team will get that information and react to it. So it’s a form of automated concierge medicine.
Would you see it as something that would be complementary to the presentation from Dr Viviane Hess on Friday of using a web portal to help manage patients’ anxiety about their cancer diagnosis or advancement? Having this ongoing communication to manage not just symptoms but also some of the palliative care options towards easing people’s anxiety, distress and ultimately extending the quality of their life further?
Yes, absolutely. There are a number of studies now showing that by monitoring patients’ symptoms using electronic tools that a whole host of symptoms can be better managed. This includes anxiety, this includes depression, this gives us the ability to answer questions that patients may have more quickly or in real time. So there are many applications here. Even beyond the setting of this study, which was in patients with advanced or metastatic cancers, we could see benefits, for example, in people after surgery when we’d like to monitor how they’re doing after their procedure. There are implications even beyond oncology; there are many diseases that carry symptoms with them – heart failure, emphysema, diabetes. In all of these settings this kind of an approach could potentially not only bring patients and doctors and nurses closer to each other but could improve outcomes.
As noble as that is I’m sure someone somewhere will be asking, ‘And who is going to pay for that?’ But ultimately psychology is probably going to be vindicated and some of the clinical advances we talk about at conferences like these have huge bills. So where would you see the priority being in terms of funding clinical advances alongside supporting patients who are already journeying through this diagnosis and recovery?
That’s a terrific question. Unlike a new drug that has these kinds of benefits there’s not a pharmaceutical company that’s backing the implementation or the dissemination of the new advance. In this case we have to rely on other mechanisms for implementation but there are a number of findings in this study that can help us in that direction. First, this is a very cheap intervention. The software applications are inexpensive to develop and there are many of them that are available. This intervention did not take any additional time; the office visits were no longer and nursing time was not increased. In fact, it probably saves money because the number of emergency room visits went down. So this is likely a cost-effective approach that improves outcomes. We hope that as hospital systems and cancer clinics recognise the value of this intervention that they will be more prone to adopt it over time. We also hope that the electronic health records system manufacturers or vendors will start to have better patient-reported outcome applications in their software.
