This post is part of our 20 Years Later blog series which examines progress in advancing the principles in the 1995 NCCS publication Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability(Imperatives). The eleventh principle states that “Psychosocial research is integral to comprehensive cancer care and, as such, psychosocial outcome measures should be included in all future clinical trials. The importance of this research and its application and transfer to oncology care plans should be recognized and encouraged.”

Video Transcript:

So I think it’s well-recognized and certainly from the advocate community we’ve heard time and again that cancer doesn’t affect just a body part, it affects the whole person, and often not just the person but family members and communities. So, attending to that is very important and is an integral part of care. And we’ve seen that come out in multiple different ways, perhaps the most spectacular is the IOM report on “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs.”

I have to say I was in the privileged position of being the program officer on that particular contract to the IOM. So we were able to write in the request to the people who were going to come together and put that report together to say don’t tell us just the problems, tell us how we’re gonna answer that. And I think that volume does a great job of saying that it has to be part of comprehensive care, that we have to be evaluating people, so if you look at the framework it says we need to be evaluating people, if there’s a problem we need to be connecting them with referral resources, and to me the most critical part is that we follow back.

So if I see a patient and I say, “this patient is depressed and I’m going to refer the patient to a psychiatrist or for some therapy or I’m gonna make a drug prescription,” it’s not enough that I’ve done that. I need to do that, I need to ask, and I need to make the referral, but if I don’t follow back I haven’t done my job. And that, in some ways, is the little piece that we struggle most with in a clinical setting is the follow back. Did it work? Or did I send you to someone, you didn’t go, or you went and you hated the person, or they gave you a prescription but you didn’t fill it, or you filled it and had side effects and stopped using it or threw the pills out, or felt that you were dismissed in some way. I have to follow back. That’s really critical.

So psychosocial care, I think, we know has to be part of the standard of care. We struggled a little in the clinical setting with that because I think physicians have been overwhelmed with managing treatment. But as we’ve gotten better at managing treatment I think we realize how important the psychosocial and behavioral components are, and we’re seeing that embraced more often in the clinical setting.

To do that, I think, you have to walk on all sides. You have to talk to patients and families about it, you have to talk to clinicians, you have to work with systems so that there’s a way to pull up that information right away, evaluate somebody’s status with it, and communicate among all the players what’s gonna be done about this. So there are lots of places where we need to be building systems and having conversations about how to really deliver on what we know is appropriate care. When I think of the research portfolio, what’s fascinating to me is the field of cancer survivorship was originally built on psychosocial studies, not medical outcomes. So a slight twist in that is our pediatric survivorship studies actually first looked at medical outcomes and they’re now coming back and looking at employment, relationships, social functioning. Whereas in the adult arena, a lot of the work was on coping, and psychological adaptation and not so much on fatigue, or pain, or chemobrain that we’re seeing now. So we’re seeing this sort of complementary shift in peds and adult, in part on the adult side is because people are living longer and we need to be addressing not just the medical sequelae, but the psychosocial hand in hand.

And I think in the adult world, the legacy was actually, we used to think about helping people die with their disease, so the focus on coping and emotional well-being was very big when we thought of survivors because we’re gonna help them die of their disease and not live with it. But once we started saying, “oh wait a minute, they’re gonna live with it,” then we had to shift gears and say, “Okay, so your emotional is gonna be driven by the fact that you have these pain syndromes and that your intimate life is ruined by this and we need to address that if we’re going to help you cope with this illness.” So we’ve seen that now come back and be better integrated in the care of adults because we expect them to be there. And we expect survivors to talk about it and bring it up and that’s not easy.

We have all this technology and it’s wonderful, but if you’re feeling really sick, it’s hard for you to use that and exercise that option. You do need to have advocates advocating for you, loved ones who come to the clinic to say, “Well, you know Jessie’s really been fatigued lately,” or “John has really been yelling at the kids lately,” so that you have resources to help you get the care that you need. So it has to be a dialogue, we have to be engaging all of the parties. And it’s moving. I think we’re seeing that science move forward.

About the guest: Julia Rowland, PhD is the Director of the Office of Cancer Survivorship (OCS), Division of Cancer Control and Population Sciences (DCCPS), at the National Cancer Institute (NCI). Since she assumed the position of full-time Director of the OCS in 1999, Dr. Rowland has sought to champion the visibility of and investment in cancer survivorship research both within the Institute and across other federal and non-governmental agencies, and to raise public awareness about the health and quality-of-life needs of the growing population of cancer survivors and their families.

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