Survivorship Services

 The Journal of the American Medical Association Network Open had an interesting article last week about survivorship services at cancer centers.

I've been thinking a lot about survivorship lately -- what happens to cancer patients after they are finished with treatment. Lots of patients feel abandoned by their healthcare team, even though they continue to deal with physical, emotional, and psychological issues after they are "finished" with treatment. That's partly because their healthcare team is focused on diagnosing and treating, and they aren't trained to handle what comes afterward. 

At the same time, I'm also aware that most cancer centers do provide survivorship services. So I think this is partly on the patient, too -- lots of us probably want to put all of the cancer stuff out of our minds and try to "move on," even though we have those constant physical and emotional reminders.

The JAMA article is called "Cancer Survivorship Care in the United States at Facilities Accredited by the Commission on Cancer," and it looks at the survivorship services offered at 384 cancer centers in the U.S. that are accredited by the American College of Surgeons Commission on Cancer, which has required a survivorship program in order to get the accreditation. About 70% of cancer patients in the U.S. are treated at one of these accredited centers.

The results of the research are pretty interesting, and confirm that contradiction, that patients feel like they are abandoned even though survivorship programs are common.

The research involved a survey sent to the 1400 cancer centers that are certified, with 384 responding. 

The survey found that most survivorship programs include nurses (87%) and social workers (72%), and some also included physical therapists (47%) and occupational therapists (23%). All of that makes sense -- these are the folks who can handle the physical and psychological issues that come with being a survivor. 

The most common services that are provided include screening for new cancers (87%), nutritional counseling (85%), and referrals to other specialists (83%). Other services include creating survivorship care plans (43%), sexual health (57%) and fertility services (57%). 

It was more common for treatment teams to deliver survivorship services (63%) than for a separate survivorship clinic (31%).

About 80% of the cancer centers surveyed thought they were doing a good job with survivorship services. Still, while many cancer patients use survivorship services, the centers also recognized that there were many that did not. They said lack of referrals and low patient awareness were the biggest barriers to their services being used more often.

I find that especially interesting -- while the survivorship services are successful, it's often an internal issue that keeps them from being used -- oncologists aren't telling patients to use the services. And most programs do rely on the treatment team to provide services, rather than a separate clinic. Of course they are likely to be focused on treatment rather than what comes afterwards.

The issue of the journal that the article appears in also includes a commentary about it. Essentially, the research article says that the survey is valuable because it provides a baseline -- a way of measuring how much such services might improve in the future. 

But the commentary goes further, and says the time to act is now. We have data to show what works and what doesn't. Relying on a passive approach isn't working -- basically waiting for patients to ask for help. A more active approach would be much more effective, making a survivorship care plan an expected part of the treatment process. It's not a matter of the patient asking for help (which is useless if the patient doesn't know that help exists). It should be a matter of a survivorship team being brought in whether the patient asks for it or not. 

Personally, I was not made aware of survivorship services when I was finished with treatment. But that was 14 years ago, when those services were much less common, and I was treated by a private practice, not at a cancer hospital. Things are certainly different now, and the cancer hospital I go to has a well-regarded survivorship clinic available.

I think the lesson is that, as with most of our lives as cancer patients, we have to be proactive. We need to know what our options are -- whether that means available doctors or specialists, treatments, or post-treatment services. Help is there. We just need to know what to look for, and where to look.