It’s All About the Guidelines - Cancer Survivorship Research Conference Part 3

One of the most informative plenary sessions was titled Guidelines/ Implementing Survivorship Care.  With the number of cancer survivors estimated to be 14 million  by the ACS the need to have guidelines for implementing survivorship care plans is important. There are four main guidelines each with a different audience.

LiveSTRONG

LiveSTRONG recommends a process for care called Essential Elements which can be used by everyone. http://www.livestrong.org/pdfs/3-0/Essential-Elements-Definitions_Recommendations

NCCN

NCCN guidelines cover:

Anxiety and Depression

Cognitive Function

 Exercise

Fatigue

 Immunizations and Infections

Pain

Sexual Function (female/male)

Sleep Disorders  

This guideline is written for the healthcare professional so a link for patients is unavailable.

ASCO

ASCO published the first of its Survivorship Guidelines in April of this year. They focus on Anxiety and Depression, Neuropathy, Fatigue and Fertility Preservation and are meant for healthcare providers. They can be found at http://www.asco.org/guidelines/survivorship

ACS

The audience for the ACS guidelines is the primary care physician. The first guideline is for prostate cancer can be found at http://www.cancer.org/cancer/news/news/longterm-care-guidelines-for-prostate-cancer-survivors . Additional guidelines will be developed for breast, colon, lung, cervical , ovarian , endometrial , uterine, head and neck and  melanoma.

After learning about these guidelines we heard a discussion of these plans by Julia Rowland, NCI and Doctors Ganz, Wender and Farber. They raised points about the challenges of implementing survivorship plans, the need to train PCPs regarding survivorship issues and the need for evidence based research to show whether or not patients with survivorship plans do in fact have better outcomes.

Dee

Every Day is a Blessing!

Do you have a Survivorship Plan?

Updated 2/4/13
Last week, I joined the Breast Cancer and Social Media (#bcsm) tweet chat. The topic of discussion was survivorship plans.  A few years ago the Institute of of Medicine (IOM) studied what care was provided survivors after they finished treatment . They found that little support was available for survivorsor their doctors regarding medical or pyschosocial issues. The IOM suggested that each survivor on completion of treatment be provided a summary of their treatments and a follow-up care plan.

Kathy LaTour editor of  Cure Magazine and author of the recently published article "Planning for Cancer Survivorship" was part of the discussion. She tweeted that only 43% of the NCI comprehensive cancer centers provide their patients Survivorship Care Plans (SCP)when they finish treatment. Since a large survivors are treated at their community facilities a majority of survivors do not have plans. I know I did not get a survivorship plan when I finished treatment although I had discussions with my doctor about what I should look out for and of course I had kept copies of all my scans and treatment summaries .  But I was very interested in hearing what she and other participants said about the key items of information that should be in the Plan.

Not only did we discuss what information should be included in a SCP but a few participants shared links to sample SCPs. Just because survivors are not provided personalized SCP does not mean they shouldn't have one. They can develop their own with the help of some great resources. And then the next time you see your oncologist/ radiation specialist you can have them fill in the blanks. Here are some great sources on SCPs.

You can download a sample plan from the article Kathy LaTour wrote.
http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/2023

Here is a survivorship plan ( pdf file) for ovarian cancer which is part of the SGO Survivorship toolkit.
https://www.sgo.org/wp-content/uploads/2012/09/SGO-Ovarian-cancer-survivorship-care-plan_FINAL_form.pdf

Here is a link to the IOM's fact sheet on Cancer Survivorship Plans.
http://iom.edu/~/media/Files/Report%20Files/2005/From-Cancer-Patient-to-Cancer-Survivor-Lost-in-Transition/factsheetcareplanning.pdf

LiveSTRONGCare Plan  / Penn Medicine Oncolink
Answer a few questions and this program will develop a plan that you can discuss with your health care team
http://www.livestrongcareplan.org/

ASCO provides forms that you can fill in with your doctor
http://www.cancer.net/survivorship/asco-cancer-treatment-summaries

Memorial Sloan Kettering provides a concise 2 page form you can fill in with your doctor.
http://www.mskcc.org/sites/www.mskcc.org/files/node/3019/documents/summary-cancer-treatment-and-follow-plan.pdf

So fellow cancer survivors at your next follow-up visit be sure to ask your doctor about a SCP or better yet bring one of the forms with you and ask for help to fill in the blanks. This is one thing we can do to make our survivorship better.


Dee
Every Day is a blessing!