Study idea: Comparing pt peer SE advice with care team SE advice in MBC pts

While I was hiking yesterday I had a thought for a study I’d like to do – or at least research whether anyone else has already done it. Of course, I cannot even think about it until I’m finished with my dissertation research, but I thought I’d write it here so that I don’t forget, but also to see what others thought about it. If anyone has any suggestions on where / how one might get some funding to study this I’d love your suggestions. A grant of some type would give the study some legitimacy, however, at this time I’m not affiliated with anyplace that could do that.

Anyways, more to the point, the study idea. The title would be something like: Comparing online peer-to-peer support with oncology care team support relating to chemotherapy side effects in metastatic breast cancer patients.

Part of what got me thinking about this has been conversations with my friend Lori Wallace. She has metastatic breast cancer (MBC) and is very involved in the patient online communities. When she learns something that might be helpful, she makes a note of it.

When Lori begins a new chemotherapy regime, she looks up her notes and asks others about the side effects. She recently started Xeloda, which has a common side effect of “hand and foot syndrome”, where the skin on the hands and feet get paper thing and dry – the folks at Chemocare describe it as similar to having a sunburn on your hands and feet. One of the suggestions she had learned from her support group was to take 400mg of vitamin E. This is something her oncologist, who is truly amazing, had never heard of. Lori describes it as “It makes a subtle difference, but it HELPS and that’s a big deal. It’s the difference between walking with with painful feet and walking with bloody, raw painful feet. Feet hurt either way, but with Vit E, it’s at least possible to baby the feet a few days, then do normal things and “beat them up” without all ones skin peeling of and bloody fissures.”

Another thing that Lori learned from her support group was that Ritalin could help with the debilitating fatigue she was experiencing. It turns out that her oncologist had heard of it, but that it is not approved for that purpose. As a result, her oncologist could not suggest it. In the end, Lori went to one of her other doctors (palliative care or family medicine) in order to get the prescription.

These are just two examples of the type of information that patients are gleaning from each other through online support groups. It isn’t necessarily that the health care team doesn’t know – more that they are not empowered to share – but also that they don’t always have the time or motivation to seek out ways to reduce some of the sometimes rare side effects of a given chemotherapy regime. Patients on the other hand are motivated to find that information. When you are suffering, you reach out to those who understand and appreciate your pain, and can offer some ideas on how to make your life better.

I want to highlight that this is very different than snake oil type “cures”. This is not people who have no experience with the illness lecturing on what might work – rather it is people that do know exactly what it is like to live with the illness or side effect, and can share the things that make a “subtle” difference that really is the difference between having a good day and having a bad one – and when your days are few, every good one matters.

I also want to highlight that the information received isn’t always useful and in some cases does cause harm. This is part of the balancing act patients of critical and chronic illness need to learn how to navigate.

For a research study, I was thinking of looking at what knowledges MBC patients share in their online support groups, and how that compares to the knowledge they gain from their healthcare teams. I’d also like to contrast that with the information that oncology teams receive from formal healthcare training (e.g. continuing medical education courses and conferences). I want to articulate the role that online support groups play that is beyond providing social support. We know that social support is provided by these groups, but there is also medical information provided. There is also patient empowerment support. There are real suggestions that make a huge difference in quality of life for patients. I’d like to look at this and formalize what is happening within these communities and associate it with the role of ePatients in the future of medical care.

Now, my question for my readers, does this sound like a needed/good study idea? Does anyone have any idea of organizations that might be willing to fund such a study? 




4 responses

  1. Alene Nitzky Avatar

    Becky, I think this is a very good study idea. I would want the information gleaned to be used in a way that would enlighten healthcare providers about their limitations and open their minds and approaches to making referrals. What they do now is hinder patients from getting information they can use. By not being aware of the resources that are out there- due to time constraints, personal or professional bias, burnout, lack of empathy, or other barriers, they are not contributing to optimal outcomes for patients. I am a nurse and not a cancer survivor, so I cannot possibly provide firsthand knowledge or experience. It is imperative that healthcare professionals maintain a level of self-awareness and humility when making recommendations to patients who are suffering from side effects or after effects of treatments. My upcoming book Navigating the C: A Nurse Charts the Course for Cancer Survivorship Care talks at length about the need for healthcare providers to get out of the way and be more open and accepting of support that is available within communities, that might not be medical support. And I also talk about the snake oil bit- that is very different than being open to people with firsthand experience, knowledge and skills that are supportive and helpful.

  2. scottx5 Avatar

    I really have to think about this. My “problem” circles around no support or human contact with the “cancer system.” One problem is the need for caregivers to allow men to die on their own. Men aren’t supposed to have needs, fears or moments of devastating loneliness. We don’t belong and our pain is is not genuine but some sort attention getting scam.

    My experience is that cancer is something only women can truly experience. Men awkwardly “have” cancer and do a damn poor job of it. Had a follow-up call from the cancer institute a few weeks ago and my anger with their indifferent care was countered with: “Well, I guess you are lucky to be alive.” And I guess this is right.

    1. Rebecca - @rjhogue Avatar
      Rebecca – @rjhogue

      Scott, I despise the “lucky to be alive” narrative. I think it is kind of like the “we are all patients” narrative, in that it is something that is said to make the healthy feel better – but also something that denies the suffering that is critical illness. And yet, the lucky to be alive narrative does seem to work for some survivors (and I even use the term survivor, but that is largely because it is the word that is understood by everyone, not that I feel like I survived).

  3. Lori Avatar

    Is it inappropriate for be tje 1st that says, “Yes, PLEASE!”? I will mention it to my Onc and see what feedback she has. ?

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