Chapter 11 : Additional Programs and Final Thoughts
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Description
Dr. Schover begins this chapter by discussing two additional projects she has worked on to test online interventions for sexuality and fertility. Next she talks about “Bring It Up,” a marketing effort for Will2Love aimed at increasing the number of people who discuss sexuality with their oncology teams. She talks about the self-help tool provided on the site to give patients an action plan for discussing sexuality with their providers.
Next, Dr. Schover reflects on her hopes that onco-fertility will evolve into a topic of easy discussion with patients that is fully integrated in daily care of the active cancer patient and the survivor.
Finally, she reflects on her time at MD Anderson, noting that when she first came to the institution, the focus was on providing drugs and has shifted productively to greater focus on quality of life issues. She notes that she has contributed to strides made and is pleased to have been recognized as a pioneer in onco-fertility.
Identifier
SchoverL_02_20181004_C11
Publication Date
10-4-2018
City
Houston, Texas
Interview Session
T.A. Rosolowski, PhD, Oral History Interview, October 04, 2018
Topics Covered
The Interview Subject's Story - The Researcher; MD Anderson Product Development and IP; Discovery, Creativity and Innovation; Finance, Entrepreneur, Biotechnology; The Researcher; Professional Practice; The Professional at Work; Definitions, Explanations, Translations; Overview; Understanding Cancer, the History of Science, Cancer Research; The History of Health Care, Patient Care; Survivors, Survivorship; Patients, Treatment, Survivors
Transcript
T.A. Rosolowski, PhD:
Well, I have a couple of other questions, and you can tell me if—I mean, I picked these off of your CV, and you can tell me if you think they’re significant. There’s the connection, so the American Cancer Society pilot trial that you were involved with.
Leslie Schover, PhD:
I’m just trying to figure it out, because I’ve been involved with so many different ones.
T.A. Rosolowski, PhD:
That might be. I kind of… And then there’s the Bring It Up! Cancer Sex and Fertility campaign.
Leslie Schover, PhD:
So, the American Cancer Society trial is the one that’s ongoing now, that I was telling you about. I actually am working with a couple of people in the intramural group of the American Cancer Society, and they gave us some funds to do this trial, which is a trial of the self-help programs, very much as a standalone, without any direct clinician contact, and so that’s the one where the results have been a little bit disappointing. So far, we don’t have the outcome data yet, but I was disturbed when I started seeing how many dropouts we had and how much time people were or weren’t spending on the website, or the comments they made about, it would have been nice if you had information X, Y, Z, and we did have information X, Y, Z. So that really bothered me, and so that’s already led to some modification in the way we’re presenting the website. I really appreciated the chance to do that study, it’s by far the largest study of the ones that we’ve done. I have had some talks with the Palliative Care Committee of the Southwest Oncology Group, and they may be interested in doing a study of our self-help programs in patients with advanced disease, and that would be a great opportunity to test our new and improved version of our programs and see if they’re doing better, so I’m hoping that will go forward.
T.A. Rosolowski, PhD:
Absolutely.
Leslie Schover, PhD:
The Bring It Up was part of our marketing efforts in a way, but also a little public health campaign that’s free, where we created a little website and we created what we call three-step action plans, for patients and for oncology professionals, to try to improve the rate of people talking with their oncology professional about sex and cancer, because currently it seems pretty clear, from a variety of studies, that at best half of patients recall any talk about sexuality with someone on their oncology team, and then it’s usually two sentences during informed consent and it’s never brought up again. So the patient action plan is: at the beginning of an appointment, or even when you’re making an appointment, mention that you’ve got a special question and you need a few minutes to discuss it, and don’t go without asking your question. And prepare a detailed question in advance, like I now have an erection problem and I want to know what are my treatment options? Or I’m having pain with intercourse and dryness and I don’t understand why that’s happening. So, something specific. Then the third step is don’t leave without a next step. So don’t just get some kind of a, ‘Well, I don’t know, maybe you should ask your gynecologist.’ But try to get a specific referral or a specific suggestion of what you can do next. And then the clinician three-step plan is you know, ask one quick question for every patient at some point during their treatment, planning and periodically at follow-up. Like, ‘Many people find that their cancer treatment has an effect on their sex life or their fertility, do you have any concerns’? If they have a concern, have a trained local sex expert in your clinic-- which is the idea that we promote with our PRO Portal-- that an advanced practice nurse or a physician assistant or a nurse navigator or an oncology social worker, who has some time to sit down with a patient and should get enough training to understand the sexual and fertility issues in the populations they serve and be comfortable talking to the patients. The third step is having a referral network for specialty care, and that assessment interview should result in appropriate referrals, maybe both for a mental health and a GYN referral or a urology referral or an oncofertility referral.
T.A. Rosolowski, PhD:
So that, is that still ongoing or that was a marketing that was with a specific time period?
Leslie Schover, PhD:
Well, the website is still up. We haven’t been promoting it as much recently on social media, but I think what it has led to is, as we talk about these contracts with hospitals, I think some of the materials we developed for the Bring It Up campaign, I would modify to do some of that internal marketing to patients and to staff and target clinics, to try to get them to talk about these issues and get them brought up and resolved.
T.A. Rosolowski, PhD:
What’s your thought about—well, let me start again, because you were talking about kind of what is the big arc of this issue, you know from sex therapy being seen as the cool new thing, but never applied in areas of chronic disease. Then slowly that begins to get some traction and interest and research investment. What do you think is the longer term story. What’s that going to be, with adopting these kinds of practices within hospitals and clinics?
Leslie Schover, PhD:
Well, what I hope would happen is --I think we’ve slowly gotten in the biggest hospitals, specialty services that serve maybe 5 or 10 percent of patients. Like Memorial Sloan-Kettering has sex clinics for men and women, and my guess is 5 or 10 percent of their patients are seen there, who are usually well insured and well educated and want those services. But what’s been a lot more difficult is integrating these issues into daily care, the way that we now, for example deal with survivorship care. But you know this is one issue with survivorship that often gets off the radar screen and doesn’t get discussed. So having the more practical, short-term solutions that can help a lot of people, where maybe the more complex problems need to be seen by the specialists, I think that’s the part that’s the difficult thing to get hospitals to adopt. And not just in cancer, but I mean we’ve also thought about expanding our company to diabetes and cardiovascular disease, which also have very high rates of sexual problems and again, even fewer self-help options in terms of books or websites or clinics, that focus on them.
T.A. Rosolowski, PhD:
Would that be a market for you at this point, would that improve the chances of marketability of the material?
Leslie Schover, PhD:
It would probably improve our chances of getting investment, because it would give us a wider market. But also to make that switch, we would need a couple of hundred thousand dollars to develop all the correct materials and test them, et cetera, and so --at least that much. So that’s the obstacle, is to expand into that you’ve got to have the resources.
T.A. Rosolowski, PhD:
Right. Well is there anything else you would like to add at this point?
Leslie Schover, PhD:
I don’t think so. I think we’ve talked about a lot.
T.A. Rosolowski, PhD:
Do you have any reflections on what you were able to accomplish when you were at MD Anderson, what you’re really contented to have done, something that meant a lot to you?
Leslie Schover, PhD:
Well, when I first came to MD Anderson in the early ‘80s, I was the only psychologist dealing with adult patients, and the psychiatrists that they had then were very contemptuous of anything except giving patients drugs for really major problems like post-surgery delirium or profound depression, or something like that. The one area that really had good mental health services was pediatrics. And you know by the time I came back in 1999, although Behavioral Science was a research-oriented department, clearly, people were working on issues that were important to patients with either cancer prevention or survivorship. So it felt good to be part of a group of people who had the same goals and interests as I did. I’m sorry that I never was able to get the institution to really implement a full-scale innovative program that would serve men and women with sexuality and fertility, but we certainly did make strides and certainly the oncofertility program is great now. As far as my career goes, not necessarily specific to MD Anderson, I certainly have gotten a lot of recognition as being a pioneer in this specialty area. People come up to me in conferences and say, “Oh, I’ve read a lot of your papers,” you know those kinds of things which are certainly gratifying. So I feel like I’ve certain had an impact, you know in patient care.
T.A. Rosolowski, PhD:
Is there anything else you’d like to add at this point?
Leslie Schover, PhD:
I don’t think so.
T.A. Rosolowski, PhD:
Well, I’m really glad you came in and chatted about all this.
Leslie Schover, PhD:
Well, thanks.
T.A. Rosolowski, PhD:
I mean it’s a totally different kind of perspective.
Leslie Schover, PhD:
Yeah.
T.A. Rosolowski, PhD:
Well, I’m really pleased. We can talk about this after, but please know, these interview materials will be publicly accessible, which means you can use them too, for your own purposes. So you know, it’s nice to be creating this record.
Leslie Schover, PhD:
Sure.
T.A. Rosolowski, PhD:
Well I want to thank you.
Leslie Schover, PhD:
Thank you.
T.A. Rosolowski, PhD:
And just for the record, I am turning off the recorder at quarter after two. [End of Interview]
Recommended Citation
Schover, Leslie PhD and Rosolowski, Tacey A. PhD, "Chapter 11 : Additional Programs and Final Thoughts" (2018). Interview Chapters. 1502.
https://openworks.mdanderson.org/mchv_interviewchapters/1502
Conditions Governing Access
Open
