Crowdsourcing Adverse Effects of Breast Cancer Treatment

Susan M. Love, MD, MBA; Laura A. Stokowski, RN, MS


March 04, 2015

Editor's Note: In a groundbreaking study, crowdsourcing is being used to study the short- and long-term effects of breast cancer treatment in women. Susan M. Love, MD, MBA, clinical professor of surgery at the David Geffen School of Medicine at UCLA and president of the Dr. Susan Love Research Foundation, reported study findings at the 2014 San Antonio Breast Cancer Symposium. Medscape spoke with Dr Love about this novel approach, the implications for women with breast cancer, and the potential use of social media in cancer research.

Medscape: "Crowdsourcing" seems to be a novel method of cancer research. How did you come to use it to study women who had received breast cancer treatment?

Susan M. Love, MD, MBA: What really got me interested in this was when I had my own experience with cancer a couple of years ago. I was diagnosed with acute myelogenous lymphoma. I realized, having been on both sides—as patient and physician researcher—that the patient experience was not being captured and that most physicians don't want to know about what I call the collateral damage of treatment.

I have heard physicians say, "If I don't know how to treat it, I don't want to know about it." I realized that, as physicians, we look at patients with cancer and compare them with people who have died, and pat ourselves on the back because they are alive. But as the patient, you are comparing yourself to how you were before you were treated for cancer. That is the big difference. You are happy to be alive, but you are aware of the price that you have paid to be here.

It was obvious to me that there was a disconnect. When I started looking at the literature, it was clear that most of the survivorship research was done with questionnaires developed by physicians and researchers. The questions were coming through the lens of the physician and the medical care delivery system as opposed to the lens of the patients' experience.

Having had that aha moment, the next step was to document the collateral damage of breast cancer treatment by capturing the voice of the people who had gone through treatment. It was a way of testing that hypothesis with real people.

The Army of Women Reports "Collateral Damage"

Medscape: How did you use crowdsourcing to study the patient experience?

Dr Love: We wanted a questionnaire that was developed by the women who experienced the problems firsthand. We contacted 19 different breast cancer advocacy groups and our Army of Women [an online community of more than 375,000 women], and put the invitation on our Facebook page. In the fall of 2013 we put up a website called "Question the Cure." We asked women to tell us about their collateral damage, but to pose it in the form of a question, like on the game show Jeopardy! For example, "Is it normal to keep forgetting things that were easy to remember before my breast cancer?" or "Will the numbness in my toes ever go away?" We did this so that we wouldn't get long paragraphs from women describing their problems.

We had a huge response. More than 3200 women contributed more than 9000 questions about their symptoms, side effects, or collateral damage. Clearly, there was something there that had been untapped. There was something that we, as researchers, had not been capturing in terms of the patient experience because we really weren't asking them in an open-ended way.

Medscape: You reported some of the crowdsourcing results at the Breast Cancer Symposium in 2014, which indicated that the most common symptom was fatigue, followed by memory problems, anxiety/depression, and then numbness/neuropathy. Did the crowdsourcing results highlight any effects that were unexpected, or were there any long-term effects that had been previously unreported or overlooked in this population of women?

Dr Love: Some of the collateral damage we already knew about, such as chemobrain, neuropathy, and hot flashes and arthralgia from aromatase inhibitors. But other symptoms and side effects had been less commonly reported. There were a few things that surprised me. One that I remember was that people who were taking trastuzumab tended to complain of having rhinorrhea all the time, which I had never heard of as a side effect of trastuzumab. I mentioned it to a couple of oncologists and they said, "Oh yes, we see that." Now, that doesn't sound serious, but you can see how it could be bothersome and interfere with your life to have an endlessly runny nose.

What surprised me the most was how many women said, "How come nobody told me (fill-in-the-blank)?" For example, "When will I get sensation back in my reconstructed nipple?" And, of course, the answer is never; those sensory nerves were severed during surgery. The question we asked ourselves was: Did nobody tell them that? Or did someone tell them at a time or in a way that the women just didn't—or couldn't—hear? Because, obviously, women didn't understand or remember being told.

Medscape: Is there a reason that you use the term "collateral damage" rather than "side effects" when you conceptualized your crowdsourcing study?

Dr Love: I like "collateral damage," and now other people have started to pick up that phrase, which delights me to no end. But I use it because that's what it is. Calling them side effects makes them sound temporary, and many of these issues are not temporary. Chemobrain doesn't really improve; you get a little more used to it but it doesn't get better. Neuropathy doesn't get better, certainly. After a while, people stop complaining about them but most of the effects don't go away. Think of your car after it has been in an accident: You still may be able to drive it to work but it doesn't work quite the same. There is that dent that will always be there.

You are not the same as you were before breast cancer treatment. Life does not go back to normal. Rather, women find themselves needing to adjust to a new normal, one that includes dealing with the physical and emotional collateral damage from their treatments. It doesn't mean that we shouldn't be treating breast cancer, but we need to have a better way to capture the damage that results and better ways of helping people deal with those issues.

Asking the Experts: Breast Cancer Patients

Medscape: What will you do next with the crowdsourcing data on collateral damage?

Dr Love: The crowdsourcing study was the first step, and it has brought up a number of issues that we are now pursuing in both traditional and nontraditional ways. We used the crowdsourcing questions to develop the Quality of Life (QOL) questionnaire, which is a more traditional questionnaire that incorporates validated instruments that have been used previously in QOL research.

The QOL questionnaire was administered to our international online Health of Women (HOW) cohort, beginning in October 2014. This cohort includes women with and without breast cancer, which will allow us to compare the specific symptoms that were identified as collateral damage from the treatment of breast cancer with QOL symptoms experienced by the general population.

Some of the most frequently reported collateral damage from breast cancer treatment could also be attributable to menopause or the impact of other chronic or inherited diseases. We don't know whether it is all from breast cancer treatment. From the HOW cohort, we also have data on health demographics as well as data on breast cancer treatment that the women received, so we can get a much better idea of whether collateral damage is associated with specific breast cancer treatments, and whether some people—with and without breast cancer—are more susceptible to certain QOL symptoms.

As of late November 2014, we received responses from 8712 participants, of whom 2856 (33%) had a history of breast cancer. The most commonly reported symptoms among those with a breast cancer diagnosis were hot flashes (51%), sleep problems (49%), and vaginal dryness (47%). Breast cancer treatment was blamed by 66% of those who reported hot flashes, 52% of those who reported vaginal dryness, and 39% of those who reported sleep problems. Among participants with no history of breast cancer, the top three QOL issues were sleep problems (34%), depression (31%), and headaches (27%). These are preliminary results; we are continuing to collect data from the HOW cohort.

The third step, which we are trying to get funding for, is to do an experiential questionnaire. This will be a way to combine the benefits of crowdsourcing with a free-text data entry method to let people write about their experiences and their issues related to breast cancer treatment. It is a qualitative methodology, and the data will be analyzed in a way that will provide valid results.

Is It Chemobrain or the Aging Process?

Medscape: In the QOL study, are you using the control group of patients without breast cancer to determine to what degree the symptoms that women might attribute to chemobrain are really the result of normal aging?

Dr Love: Yes. As we analyze those data further, we should be able to distinguish how much is chemobrain and how much is the fact that you are 65 and you just can't remember things. If we could tell the breast cancer community that, for example, 60% of women at this age will have this side effect and that it's not all related to breast cancer, I think there is value in that.

Chemobrain is measured by concentration and memory in the QOL questionnaire. In the preliminary results, among all of those treated for breast cancer, 32% report problems with concentration and 42% report memory problems, compared with 13% and 15%, respectively, for the entire control group. Among the breast cancer survivors, 71% believe that their problems with concentration are related to their cancer treatment, and 67% believe the same about their memory difficulties.

Medscape: How will the findings of your research benefit women with breast cancer, both those who have just finished their treatment as well as those newly diagnosed?

Dr Love: We think these data can be used to help women make choices about breast cancer treatments. More important, I would like to see whether there are particular comorbid conditions or genetic tendencies that make certain treatment consequences more common. For example, could it be that women with restless leg syndrome are more likely to experience neuropathy, or that those with a family history of Alzheimer disease are more likely to experience chemobrain?

We have to help women understand their new normal and discuss it with them at a time when they can hear it. Often women are told about potential side effects at the same time they are told they are going to receive chemotherapy. If a woman who is scared to death about her diagnosis is told that she might go into early menopause as a result of therapy, she might think, so what? Why would I care about early menopause if I'm alive? It's only afterwards, when she realizes that she is going to live and she is stuck with these after-effects, that they can seem pretty significant. It may be that we recommend all patients undergo some form of post-treatment counseling and receive information on symptom relief. Perhaps some type of rehabilitation program can ease people into their new normal.

I don't have the answers. I want the recommendations to come from the data. At the end of collecting and analyzing our data, we hope to put together an expert group to come up with recommendations. Here are the data. Here is what we are missing. How can we best fix the situation with the current healthcare delivery system?

Turning Breast Cancer Research Upside Down

Medscape: Does crowdsourcing have advantages over more traditional research methods?

Dr Love: Traditional research is very top-down. I sit in my office and say, "Well, I think that the main issues related to collateral damage from breast cancer treatment are hot flashes, sexual dysfunction, and arthritis." And I might say to you, the patient, "Are these effects important to you?" and you might agree that they are, without mentioning that the thing that really drives you crazy is your chemobrain.

We need to turn research upside down, and crowdsourcing is a way to do that. Crowdsourcing asks the people involved what the issues are. By doing that, we can capture different information and start to recognize not just that the issues can be different but that the issues that matter to people can be different as well.

One of the problems with traditional research and clinical trials, especially for drugs, is that no one is going to ask about all of the side effects. There is a standard set of side effects that researchers ask about, and these are what they can get away with and still get US Food and Drug Administration approval. They don't want to document all of the problems that might be associated with the drug.

Typically, the people who are allowed to enroll in the clinical trials can't have a lot of other diseases or health problems, or be on a lot of other drugs. But in the real world, people have diseases and they have a lot of other problems, and they are on a lot of other drugs. So the data that we get from clinical trials don't always represent the real world. I think that crowdsourcing can give us some interesting hints about what is really going on.

Crowdsourcing also allows the public to be more directly involved in the research, no matter where they live. It breaks through geographic constraints and makes the research more representative of the real world. Crowdsourcing has its benefits for particular kinds of research, but it is not universally applicable.

Medscape: Your HOW cohort has a high proportion (97%) of white women. What are you doing to increase the diversity of your cohort so that your research findings can be more generalized?

Dr Love: The lack of diversity is a concern and it is something that we keep working on. What we really need, and we do not yet have the funds to do it, is a smartphone app. We need to transition from computer/laptop-based access to the study questionnaires to more smartphone-based access. We suspect that many of the communities from which we are lacking participation may not use email very much, but they do use smartphones. If we had an app, we could improve access to those groups. We are hoping to improve our reach in this way.

Medscape: Earlier you referred to the Army of Women. How did this group come about?

Dr Love: I was frustrated that so much of the research in breast cancer takes place in rats and mice. I would say to researchers, "Why don't you do your study in women?" They would say, "We don't know how to find women." And I said, "Well, I know how to find women." So we started this initiative and recruited more than 375,000 women around the country, with and without breast cancer, who are willing to participate in research. The researchers come to us with their studies and we vet them. We then e-blast the study to the Army of Women and notify them of the opportunity to participate, if they are interested. We don't match participants with researchers; it's up to the women (and men) to pick and choose which studies they might want to volunteer for. We have been very successful at recruiting for all kinds of studies but are as yet underutilized by the research community.

For more information: The Dr. Susan Love Research Foundation is dedicated to achieving a future without breast cancer by engaging the public and the scientific communities in innovative research on cause and prevention. The foundation's international online cohort, Health of Women (or HOW study), is open to all women aged 18 years or older, with and without breast cancer, and to men who have been diagnosed with or are at high risk for breast cancer. All participation in the HOW cohort study takes place online. Patients interested in volunteering for other breast cancer research studies should register separately with the Army of Women. Read about current Army of Women projects here.


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