Survivorship Care Plans (JOP podcast - August 2012)

I host and edit the Journal of Oncology Practice podcast for ASCO, and this month I interviewed Deborah Mayer, who is an advanced practice oncology nurse and clinical researcher at UNC, on the topic of survivorship care plans. Deb's current interests include eHealth and cancer survivorship, and you can read her bio on the UNC website. The podcast is available on the JOP site or it can be downloaded from the iTunes Store here.

The article that we covered in the interview was in the July 2012 issue of JOP and was entitled "Patient and Provider Preferences for Survivorship Care Plans." In the article, the researchers, who were from Duke and UNC, describe how they did focus groups with cancer survivors to elicit their preferences for survivorship care plans, including format and mode of delivery. They also interviewed five primary care physicians to get their perspectives.

You can read the article for a full description of what they found in regards to patient preferences for the different survivorship care plan templates, but in the podcast interview, what I thought was even more interesting and was not covered in as much detail in the article, was what the focus group of cancer survivors had to say about their overall experiences of the diagnosis, treatment, and follow-up phases of their cancer, particularly communication issues. For example, the survivor group pretty consistently said that while the idea of a written survivorship care plan was very nice, it was really too little, too late. What they wanted was not so much to be presented a summary document at the end of therapy, but rather each wanted his or her oncologist to write down all of the details at the beginning of therapy, including drug names and key pathology points. Along those lines, ASCO as been promoting the idea of a chemotherapy treatment plan as a companion to the treatment summary document, although in reality the penetration of both documents is pretty low in most practices. In addition, once treatment ended, the patients were very interested in knowing which symptoms they needed to report to their doctors and which they could ignore. They were interested not so much in the actual percentage risk of recurrence, but rather if they were having a symptom, when should they worry and, even more commonly, whom should they call - med onc, rad onc, surgeon, PCP, etc. I thought this was a particularly good point, one that many oncologists overlook - i.e., how bewildering it can be for many patients as to which doctor to call for which problem. I've always assumed patients knew they should call me for most symptoms, especially when they are in the middle of chemo, but this is not always straightforward from the patient's perspective.

Another key point that was brought out in these focus groups was how patients were keenly aware whenever the different members of their care team weren't communicating with each other. Too often, it seemed up to the patient him- or herself to update the PCP about the status of their cancer treatments, something that most patients weren't too happy about. In the interview, Deb makes a great point about how oncologists should be even more proactive at the start of treatment in including the PCP in the medical decision-making and explicitly dividing up the different treatment and follow-up tasks between oncologist and PCP. This is particularly true in the surveillance phase, and it should be crystal clear which doctor is going to be ordering the follow-up CEA's for example. But I know from my own experience this is much trickier to operationalize than it sounds. When the oncologist and PCP are not on the same EHR, it can be a real nightmare to exchange information and meaningfully coordinate care like that. Not an excuse, just a reality check. Even on the same EHR, it's not always at all clear cut who is going to do what, meaning that the patient is the one who gets caught in the middle if doctors don't talk to each other.

The interviews with the five PCP's were also interesting. The PCP's liked the idea of treatment summaries, but they asked that they be shorter and more to the point. They wanted the Reader's Digest version, and the amount of detail that is in some survivorship care plan documents, while it may be ideal for the patient, is irrelevant to many physicians. They also asked that these summary care plan documents not contain the usual inscrutable treatment abbreviations or onco-speak gobbledygook. I suppose they tire of getting notes from us saying that the patient received AC x 4 then T x 12, with concurrent Herceptin, followed by PMRT and an AI. While that sentence makes perfect sense to me, I totally understand how it may not do much for care coordination.

Deb was a great person to interview, and the points she brought out were instructive. For me, I realize that even now practicing at Hopkins with a dedicated breast cancer survivorship program, I still can do a much better job in getting patients the information they need in a format they can really use and engage. Once again, the key word is communication. Doctors need to be better at communicating with patients about treatment specifics, long term side effects that affect quality of life, and key issues in the post-treatment survivorship phase. For the minority of us filling out survivorship care plans or any type of treatment summary document, we should stop patting ourselves on the back that we've actually done it in the first place and try to improve the ongoing communication our patients really need from us.

Hope you enjoy the article. Since you have to be a JOP subscriber to read the full text (or wait 4 months and it will be freely available on Pubmed Central), listen to our podcast to get a real flavor of this specific research study and some of the larger issues facing our patients in this transition phase.