Monday, March 18, 2013

Survivorship Guidelines. For real.

Late last week the National Comprehensive Cancer Network (NCCN), a nonprofit alliance of 21 comprehensive cancer centers, announced its first ever set of clinical practice guidelines for survivorship care.
     There are some 13.7 million cancer survivors in the United States alone. Of those, 2.9 million are breast cancer survivors. All of us have found our way through those first difficult months and years following diagnosis. Treatment itself was one thing. Trying to adjust to life after cancer was another.
      But by any measure the guidelines are good news for any man or woman in treatment now. The 100-page report covers eight distinct areas:
  • anxiety and depression
  • cognitive function
  • exercise 
  • fatigue
  • immunizations and infections
  • pain
  • sexual function 
  • sleep disorders. 
           Standards for evidence-based survivorship care are only being developed now. The first conference on survivorship science as an entity in and of itself did not take place until 2003. In 2004, the CDC and Livestrong published "A National Cancer Action Plan for Cancer Survivorship," which included the simple, yet powerful recommendation to establish an infrastructure for a comprehensive database on cancer survivorship. I don't know if that has transpired.  While that sounds smart to me, making smart things happen is not one of the hallmarks of our framented health care system.  
           Then as most of you know, in 2005 the Institute of Medicine published its landmark consensus report Lost in Transition, which made the case for survivorship care. Six years later Livestrong held a collaborative symposium of stakeholders, health care professionals and advocates to begin a consenus building project to articulate the "essential" elements in surivorship care. 
            A later IOM report, "From Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs," recommended that psychosocial screening be part of quality cancer care.  This is well covered in NCCN guidlines but why other concepts from Lost in Transition and Elements didn't become part of NCCN's report aren't clear, even though both reports are mentioned. NCCN surivorship care guidlines, for example, don't even support the need for a survivorhip care plan or treatment summary. While we all understand that there's no economic incentive in place for this let's get serious. A one page print out is not rocket science. Both "Lost" and "Elements" stress the need for education - of providers and patients - and coordination of care. NCCN's guidelines don't venture that far.
            NCCN's guidelines are directed at professionals. How this material will make its way from the nation's 21 comprehensive cancer centers to the community setting, where the majority of women are seen, is not explained. Color me skeptical but I see a packet of information stacked on an oncologist's already stacked desk. Neither were there any outside patient advocates or organizations on the committees as listed in the report. This makes no sense to me. You'd think that patient advocacy networks would be tapped for their assistance and guidance in moving this material to where it needs to be. Let patients know and let them help. No one is more invested in assuring the provision of good survivorship care than we are
          A few other take-aways to the report:
  • at least 50% of (all) survivors suffer from some late effect of cancer treatment. The most common problems seen are pain, depression and fatigue.
  • anxiety and depression affect up to 29 percent of all survivors; and some 19% meet the diagnostic criteria for post-traumatic stress syndrome.
  • the increasing trend toward more treatment, combined chemo, radiation, hormone therapy and surgery can result in more late effects. One example was the study from last week on increased of heart disease for women receiving radiation therapy.
          Believe me, I am far from done with this topic. Sometimes It seems the more we do to treat - not cure - cancer - the more potential for problems there are down the road.  We can't go back and undo treatment we selected, decisions we made when faced with a difficult, confounding disease. I do believe we can do a better job with survivorship though, and these guidelines are one place to start.
          I hope you'll take a look at the report. You will need to establish an account but you can access the material by registering with your email address here:
#   #   #

Interesting note:  I just saw a news release from NCCN announcing that two additional cancer centers have been added to their network.  They are UC San Diego Moores Cancer Ceneter and University of Colorado Cancer Center.


Anonymous said...

Hello Jody and thanks for this. I wrote about the cancer survivorship model last June, but not in the way you might think.

First, this important focus on the real life of patients is long, long overdue.

Although perhaps in its infancy, this readjusted focus on the whole person, particularly the psychosocial fallout, is a good start.

For example, you already have books like 'Everyone’s Guide to Cancer Survivorship', or 'Cancer Survivorship: Today and Tomorrow', or 'Handbook of Cancer Survivorship', or 'Implementing Cancer Survivorship Care Planning'.

You have Cancer Survivorship Centres, like the Ottawa Regional Cancer Foundation’s Maplesoft Centre. It’s a lovely building which “incorporates the five Wu Xing elements of fire, earth, metal, water and wood – to help provide balance and harmony to the lives of cancer survivors.”

You have Cancer Survivor Parks. The R.A. Bloch Cancer Foundation, for example, has provided millions of dollars to build 25 of these cancer survivor parks across the United States and Canada, each featuring therapeutic elements like “positive mental attitude walks” amid beautiful urban settings.

In fact, back in 1985, The New England Journal of Medicine published Dr. Fitzhugh Mullan‘s account of his own diagnosis and treatment of cancer, in which Dr. Mullan defined three primary "seasons" of cancer survivorship: acute, extended and permanent.

Until last year, I'd never heard of this cancer survivorship model. And my initial selfish gut reaction as a heart attack survivor (along with "HURRAY for them!!") was: "Where's the survivorship model for heart patients?"

We know, for example, that up to 65% of heart attack survivors experience significant depression (yet fewer than 10% are appropriately identified). Our PTSD rates approach 30%. Heart disease is our biggest killer - killing six times more women than breast cancer does, and more women in fact than all forms of cancer combined.

But these stats are not that different from other patients living with a chronic and progressive diagnosis - like MS, ALS, stroke, kidney disease, diabetes, fibromyalgia, AIDS, lupus, and on and on and on. And on.

Where are the survivorship models for these patients, too? Will we see Lupus Survivorship Centers or ALS Survivorship Parks someday too?

The difference - and perhaps the reason cancer patients are ahead of the rest of us on this issue - is that survivorship plans and parks and centers and books and clinical practice guidelines take money, and lots of it.


Jody said...


Thanks so much for writing and providing an excellent perspective from another health community. I admire what you do with My Heart Sisters very, very much. I've written about heart disease a few times, noting how our culture is dominated by cancer when heart disease has a greater mortality. It's invisible. Why is a good question. My thought is that it doesn't "image" as well as good cancer story via traditional media. This makes your work all the more important.

And speaking of images, the existence of large parks, a foundation or even information about survivorship, from Dr. Mullan to NCCN, does not at all equate to a reasonable standard of care for anyone with cancer. Our system is tremendously fragmented and one patient's experience and instruction on what to expect following treatment can vary within a single practice.

The largest difficulty for women who receive all components of care, chemo, radiation, surgery, reconstruction (and then if ER+, hormonal therapies) has been the transition from active treatment into regaining health in a much altered body and mind.

So the issue to me isn't about parks, or whether or not a "survivorship center" is needed. If some entity (private foundation or other) wishes to establish one as a "feel good about doing something for cancer" then I can't help that. None of the advocates I know are asking for anything like that. There is much more at stake.

It is about communication with each patient about side effects, late effects, adjustments, and how to if at all possible, prevent the next cancer. That kind of education would help every patient through the transition the IOM identified so well. This holds true for cancer or any chronic disease. If heart patients and others need similar standards then advocacy is the key.

And it's funny, because from what I have seen and heard here, cardiac rehab is very much part of a heart disease diagnosis. I am a fan of Mary Knudson (@MaryKnudson on Twitter), who wrote "Living Well with Heart Failure: The Misnamed, Misunderstood Condition." I met Mary via Twitter, and was in trested in heart disease since my mother suffered from heart failure and many cancer patients can develope cardiac conditions as a late-effect from treatment.

Thanks again,

Lani Horn said...


This is a very helpful summary. Thank you, from all of us who don't have time to make it through the 100 page report!

The Accidental Amazon said...

Right on, Carolyn.

As a survivor and a clinician, I, too, am skeptical. I applaud NCCN, but how many versions of survivorship guidelines do there have to be before any of them are implemented? My employer paid for several of us to get STAR oncology rehab certification last year (which, frankly, leaves a lot to be desired...more on that another time) and yet there were no oncologists involved in any of the meetings to implement this. As they are the ones who have to write the orders for onc rehab, this seemed like rather a glaring oversight. Not only that, but the only navigators provided in this particular local provider system are for breast cancer patients only. The patients I see have all sorts of cancers, and each of them needs a navigator.

With an already costly and overburdened healthcare system, I fear we are still a long way from making survivor care plans the standard of care.


Anonymous said...

Hi again Jody and thanks for your thoughtful response to my comment.

You are so right! Comprehensive "survivorship" care should not have to depend on where you live, or who your doctor is, or how skilled your care team is in follow up.

We see the same issues with cardiac rehab; although all studies show that a combination of exercise-based plus psychosocial/education support is linked with significantly more positive longterm outcomes, the vast majority of rehab programs offer exercise-based sessions only. You might get the full meal deal if you happen to be lucky enough to have your cardiac event in a city that actually follows clinical practice rehab guidelines. If not - well, too bad, so sad!

Your post reminds us all that there's a big disconnect between those who are writing the survivorship books or raising funds to build a survivorship park and the actual real live patient going through the experience. Again, it's back to the money: bricks-and-mortar fundraising is always easier; donors like to point to a building or a park and say "I helped to create that!"

The survivorship model is important because it moves the needle from "diagnosis/treatment/cure" to "living with" - that's a very big change in thinking for some health care providers.

As I've said before about cardiology, our docs can stent us, bypass us, drug us, zap our wonky electrical systems - but they cannot address the very things that damaged our hearts, often 20-30 years earlier. Yet we see the same thing in cardiology: we are booted out the door to free up the bed as if we've been in for a routine appendectomy or any other acute medical event that will never cause us another moment's distress ever again after it's "fixed".

As you pointed out, the fact that changes like survivorship guidelines appear to be coming down the pipe without input from real live patients is yet another example of top-down health care initiatives. They look good, they sound good - it remains to be seen whether they'll trickle down to the end users who need them.

Regards - and many thanks for the work you do,

Jody said...

Thanks much, Kathi. Your skepticism is well earned. One thing that may make a difference here: often NCCN guidelines pave way for reimbursements. That can be powerful.

This increasingly convinces me as an advocate, and I know you are already doing so in your work, how much we need to continue to let others know that these guidelines here, how they developed, and why.

It's ironic to me that these guidelines comes almost 15 years after I was diagnosed with cancer. They've been a long time in coming.


Jody said...


I grew up with a mother who was chronically ill; consequently I understood how health care and hospitals worked far too early.

It's interesting, one of the first, really good memoirs about illness that I came across as a young adult was (if I remember correctly) "Heart Sounds," by Martha Norman Lear. She was able to capture the experience from the patient and clinical perspective...the depression following heart surgery, the psychological ramifications of having your "heart" operated on, and so forth.

Keeping our shared experiences on the table shows how much we all have in common.

Great discussion,

The Accidental Amazon said...

Carolyn, never hurts to tell you again how many times I've turned to your blog or referred my cardiac patients to it for practical, evidence-based info. The points you and Jody raise indicate some issues in our healthcare system that perhaps guidelines alone cannot fix.

Our healthcare reimbursement system is based almost entirely on addressing 'acute' problems, or acute exacerbations of chronic diseases. Not wellness. Not maintenance. Not prevention. Not collateral damage from the treatment of acute problems. One of the most inadequately reimbursed areas in the entire system is mental illness, including depression. But even with standardized assessment tools already in place for depression, fatigue, pain, etc., many docs don't seem to know about them or use them.

Part of the issue is how physicians are trained in the first place. But a large part of the problem is reimbursement. Doctors are not reimbursed for providing 'education' to patients, and if they do attempt to provide it, they have to use their imagination with codes to get paid for it. Ditto the rest of us who provide clinical care, to one degree or another. Another glaring omission is figuring out a way for doctors to get reimbursed for much-needed discussion of end-of-life plans with patients.

It's all more than a little crazy. Perhaps one thing we need to focus on is how the ICD and DSM reimbursement codes are defined in the first place. Because they rule healthcare to an alarming degree.

And along with that, there needs to be a paradigm shift in how we define healthcare and treatment in the first place. Here's an example illustrating all of the above. In recent years, my PCP wanted to put me on a statin because my LDL cholesterol was high. Didn't matter that I had no coronary artery disease, or that I was normal in every other way, including my HDLs & triglycerides. Didn't even matter that research has shown that putting a woman like myself on statins didn't actually prevent mortality from cardiac disease. Never mind that the most common measure of LDLs is not even accurate, according to other research. He never talked about diet, exercise, appropriate supplements, none of that. And he's a good doctor. But often all any doctor has time for is ordering less-than-perfect tests and writing prescriptions.

Nuts. But that's the kind of thing we're all up against. And it reverberates throughout the system.


Jody said...

We're a sickness system, not a wellness system as you point out.

And I hear you on the statin business. My prior internist was jumping all over the statin bandwagon. Next one? Not so much. "Nothing indicates that you need them....."

I often think about the men and women who don't look at the studies, who don't try to find out everything they can about recommended procedures or prescriptions.

That is just as scary to me as all of this.


itsthebunk said...

Jody, thanks for another great post. This is both fascinating and disappointing.

In my opinion, Cancer Centers are missing out on a huge opportunity to help survivors in meaningful ways while creating additional revenue streams for their businesses. They will only get it right when they constructively include survivors (i.e., end-users and subject-matter experts) in the design and development of Survivorship Care.

As a 19-yr, 8-yr and 4-yr survivor and experienced design thinker, I have spent hours analyzing needs and issues and developing smart solutions for survivorship care, but have not yet found the *right* organizations/people to present them to.

It's great that guidelines are coming out... hopefully it signals a shift in thinking that will lead to the right environment for real change to happen.


itsthebunk said...

I've now gone back and re-read the full discussion with Carolyn (hi!) and Kathi (hi, too!).

Survivorship parks, retreats and so forth are exactly what I, and many cancer survivors I know, want nothing at all to do with! Going to a lovely building designed with the "five Wu Xing elements" or going for walks that encourage a "positive mental attitude" are not, in my books, anywhere close to being anything that would resemble a true long-term survivorship plan or model! Sorry, but the notion of survivorship parks makes me cringe.

A general wellness park that doesn't segregate by disease might be a lovely place to visit -- they already exist and are called Botanical Gardens, National Parks and Nature. I know I am ranting, but this has touched a nerve!

A survivorship MODEL has to address the holistic and complex needs of the survivor of the catastrophic illness (cancer; heart attack, etc.) and help rehabilitate him or her.

I've often thought about people going through rehab for substance abuse: very often, a minimum of 28 days inpatient, followed by years of regular AA meetings, for example.

People recovering from substance abuse and addiction have better long-term care/options/models available to them than cancer survivors.

I've also thought a lot about people going through rehabilitation for spinal cord injuries (the documentary, Murderball comes to mind).

When one has a visible, easily quantified physical disability, it is, in my opinion, much easier for any and all stakeholders in that person's care/life to embrace the need for a comprehensive survival plan/model. It's a no-brainer. It's plain to see.

When you are done with cancer treatment and your hair has grown back, that's it! You look like a "normal" human being, so you must be fine and get on with your life. This is so often a feeling internalized by survivors, even if their medical teams tell them otherwise. They join the ranks of the invisible walking wounded, as a cancer diagnosis is inherently multi-dimensional in its effects -- its impact is holistic, to reuse the term.

So, beyond the medical and psychosocial, there is also a need for many to be re-trained to re-enter the job market/working world; reduce the stigmas of a prior diagnosis (gaps in resume, etc); and even adapt to living with and managing new (often, invisible) physical limitations. And of course, many of us in the U.S. experience financial ruin as a consequence of a cancer diagnosis, and need help rebuilding from that.

I know that like most things cancer-related, this is a very complex issue (who will pay for it? reimbursement/Dx codes?;whom to include? how to disseminate to physicians, patients, etc.?) and any viable solution will require deep cultural change.

Anonymous said...

What a great discussion this is turning out to be! Hello Liza and Kathi (and Jody again!)

But I almost need a wee lie-down now to recover from being pissed off about survivorship parks and "positive mental attitude" walks. Not that these are not perfectly lovely things, but no cancer patient stares out the window during chemo and pines: "Oh, if only there were a positive mental attitude walk out there for me!"

This - veering off dangerously onto another rant topic - has much to do, in my never-to-be-considered humble opinion, with this pervasive patient engagement movement that is almost exclusively populated by non-patients! I wrote about this last year in "Has Industry Co-Opted Patient Engagement?"

And just this morning on Linked In, the wonderful Colleen Young @VirtualHospice openly confronted yet another patient engagement group hosting an upcoming conference called "The National Forum on Patient Experience" because the group has NO patients involved!


Nancy's Point said...

Very interesting post and discussion. Jody, I think your statement somewhere in there that says,"We're a sickness system, not a wellness system," is a huge part of the problem. And why it's taken so long to come up with these guidelines in the first place is beyond me. Somehow it seems as if this issue has been made more complicated than need be. Survivorship care, no matter what illness or condition, seems like a no-brainer and it would probably save money in the long run. As Kathi mentioned, we should be focused on education, wellness, maintenance and prevention. It also seems as if doctors are too often passing the buck regarding ongoing care concerning long-term side effects, etc. And parks and retreats are not the answer. Sorry, I'm starting to ramble... Thanks for the post.

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