Wednesday, December 24, 2014

Survivorship Guidelines. For real.

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 
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. 

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.

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


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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