Peer-Led Support Groups for Prostate Cancer Patient Care - Herbert Geller

January 30, 2023

Alicia Morgans interviews Herb Geller about a study into peer-led support groups for prostate cancer patients. Dr. Geller explains the AnCan model which is focused on online peer-led support groups catering to different types of prostate cancer. These groups provide a platform for patients to share their experiences, ask questions, and gain information without additional irrelevant data. As a part of their investigation, AnCan sent out questionnaires to assess the usefulness of these groups and found that over 80% of respondents deemed the information provided beneficial. The findings indicated that AnCan's approach contributed positively towards patients' treatment decisions, their interaction with healthcare teams, and improved their quality of life. The discussion also covers the unique needs of the active surveillance patients and the ways to meet them. Dr. Geller expresses hope that healthcare providers will acknowledge the value of peer-led support groups and recommends them to patients as part of treatment guidelines.


Herbert Geller, PhD, Board Member and Moderator, AnCan

Alicia Morgans, MD, MPH, Genitourinary Medical Oncologist, Medical Director of Survivorship Program at Dana-Farber Cancer Institute, Boston, Massachusetts

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Alicia Morgans: Hi, I'm so excited to be here with Dr. Herb Geller, who is a moderator and board member of AnCan. And who's here to talk with us about a recent presentation, an investigation that he and his group have done looking into peer-led support groups and the way that they help patients really cope with the diagnosis of prostate cancer. Thank you so much for being here with us, Dr. Geller.

Herbert Geller: Geller. Oh, it's great to be here, Dr. Morgans.

Alicia Morgans: Wonderful. So, Dr. Geller, can you tell us a little bit about what it means to be a peer-led support group? What does that mean and why was that important to investigate?

Herbert Geller: So I think the AnCan model is that we have web-based support groups for several different types of prostate cancer. So we have groups for advanced prostate cancer, intermediate, we have groups for actual surveillance and we have a group for under 60. And we do that because we believe that having these individual categories helps people associate with each other and learn from each other without having sort of excess information that doesn't apply to their condition. So the way our group works is we have open sessions, people can just join us through the AnCan website. We don't ask for any money and they're welcomed into the group. The model that we use is that each person is polled at the beginning of the session to ask if they have an update or some question they want to ask. And if new people come, we give them an extensive introduction to AnCan. We lead them through a series of questions so that we can get familiar with their disease phase and what are the questions that they have for us? And the key here is that we're all peer-led. Those we're all prostate cancer patients. If we have professionals such as physicians, as members of the group, and we do, they're really there as patients. They're not there as special experts, although certainly we take advantage of their expertise.

Alicia Morgans: Well, that makes a lot of sense. And I think importantly, you've really emphasized this peer-led perspective, which is wonderful in sort of leveling the playing ground for everyone to be able to feel comfortable to ask questions, even if there they might be considered, even by the person who's asking himself, to be a silly question. I think that kind of ability to help everyone feel comfortable and able to engage is so, so important. So what exactly did you investigate when you did the study to try to understand these peer-led support groups?

Herbert Geller: So, I mean having run the groups for a while, we came to the conclusion., We really wanted to know if we're really helping anybody, from their perspective. So the way we did this was we surveyed those who had been to AnCan meetings and we sent out a questionnaire. We actually sent out two questionnaires. One, which is a general questionnaire to all the AnCan group members and then another one specialized in the actor surveillance group, because they have their own special needs. And then we asked questions about quality of life, we ask questions about how it might have improved their interaction with their physicians.

So for example, one big question is, "Did you find the information useful that to get from AnCan? Well, over 80% of our respondents said they found the information useful. And if we break that up into individual categories, we find out that they took the information and they discussed it with their care team. Many of them, over 50% that said it informed or changed their treatment plan, they helped navigate the treatment. And finally, the AnCan watchword is you are your own best advocate. So we really believe in educating the patient so that they can advocate for themselves with their physician and their team.

Alicia Morgans: Well, this is great. And I think really supports the idea that the work that you're doing within these groups leads to people feeling like they're learning something that's of value and hopefully empowering them just as you said, to engage confidently and to ask the questions that they want to ask. So this is all really positive. Was there anything that you found that wasn't necessarily as positive or something that might help you understand where to go in terms of next steps?

Herbert Geller: Before we go to that, we've also looked at how being with AnCan improved their quality of life. One phase was how do you interact with your physician, but what about how you might increase your quality of life? And we found out that, for example, from the discussions at our meetings, about half the people changed or improved their diet, which is an important thing. 90% said they either changed or increased their exercise and we strongly believe that exercise is a way to help fight this disease. And one major field finding was that over 50% reported decreased stress in their interactions with their physicians and in facing their disease. So this, we felt was a very positive effect on.

Their patient's quality of life. Now, another group that we surveyed were active surveillance patients. And they have their own particular set of needs, and so for example, they felt, over 70% recommended that active surveillance patients be part of an AS group only. They feel that they have very special needs where they felt that they learned about new diagnostics and it contributed to their staying on active surveillance. And so we feel very strongly that for both people under active treatment and active surveillance, having this peer group has helped them with their disease.

Alicia Morgans: So I love that and thank you for more fully characterizing some of the things that you've investigated, especially around quality of life. And really, it's so interesting to hear that the active surveillance patients really have their own needs. And this is what we think about and see in clinical practice. And sometimes they can feel forgotten, I would imagine, or overwhelmed by some of the things that they hear from folks who are receiving active treatment or who have received doctors treatment. So are there, are there things that you do in your peer-led support groups that actually provide additional or more unique support to the active surveillance participants?

Herbert Geller: Well, I think we do. The active surveillance group has a very strong connection with physicians who are really promoting active surveillance. And the consequence of that is that they have a lot of educational sessions. More than in fact, that are devoted to more advanced treatment. So that they're very focused on education and feel that educating early in the disease process will help people stay on active surveillance. So they do have their own special approach to how they conduct their meetings. The other part of our ethos is that because we are a web-based peer group and because we've isolated the different levels, we find that we get a lot of information from people who are being treated by different physicians all over the country, so that we have a really strong background of information about how different physicians are approaching their patients and can sometimes recommend to a particular person who shows up in the group, "We think this physician would be the ideal one for you based on your personality and how we know they interact with their patients."

Alicia Morgans: Oh, that is certainly helpful as well. I have a question, and this is maybe outside of the scope of the particular study that you did. You didn't answer this question, but one of the things that I worry about, one thing that was identified in a recent survey study that I was fortunate to participate in was that there's actually only a minority of individuals who end up getting engaged with these kinds of support groups. When you think about all of the people around the world who are actually diagnosed with prostate cancer. And so I wonder, and certainly these surveys don't address that particular question, but I wonder how AnCan and how surveys like this can help understand which patient needs are not necessarily being met so that we can engage larger portions of the population over time and ensure that they have the care that they need as well?

Herbert Geller: Yeah. I think that again, we can focus on, we didn't actually do it quantitatively, but obviously during the course of our sessions, we find out what are the kinds of things that perhaps physicians might overlook. So for example, we really believe in genetic testing. This is something as part of the NCC guidelines n both genetics and tumor sequencing. And yet we find that some people have not had those procedures. So there's a case where educating physicians about the importance of genetics and potentially precision medicine and how we approach this disease would be an incredibly useful thing. The other thing is, and I've been ... is while we have a significant attendance at our meetings, it, nowhere matches the number of people who we think could benefit. And so hopefully through sessions like this, we can alert the medical community that AnCan and other types of organizations like us exist and recommend them to their patients.

Alicia Morgans: And that's important, I completely agree. And I think as we continue to evolve as a cancer support community, ensuring that we understand the diverse needs of individuals out there and adapting the way that we provide these peer supports, I think will be so important as we really do try to meet more and more people where they are. So if you had to sort of sum up this work and of course make a forward thinking perspective of where you hope to take this work, what would that be?

Herbert Geller: Well, I hope to take it to the point where physicians begin to recognize the value of this peer support group and recommend it to their patients as part of a treatment guideline. That's what I'd like to say. Both in AUA and ASCO, to see that this is a valuable thing. And just tell your patients that this is something you could try and not see it as a threat that we're going to sort of overeducate your patient. And then finally, we're planning surveys for the physician side to learn more about what physicians would like to see from their patients and have a better match up both the needs of the patients and the needs of their treatment group.

Alicia Morgans: Well, I think that those sound like great perspectives and goals for the future. And certainly I think as physicians care for the patients that they see in their clinic, they really do need to recognize that it takes so many different people in the lives of patients with prostate cancer to meet different needs and to take care of different aspects of their lives. And physicians play a very important role, the rest of the care team of course plays a very important role, but peers themselves certainly play a role as you and your team have clarified and have really demonstrated in this work. So I wish you and the team continued success with your peer support group, but also with your ongoing research, which I think is so important and being patient-led and patient driven is also a really exciting aspect of the work. So thank you for your time, your continued efforts and your expertise.

Herbert Geller: Well, thank you very much for this opportunity. I'm very glad to present what we've done.