Divya Ajay: Yeah, thank you so much. It's such a pleasure to be here and such an honor. Thank you. So I would love to talk about our work today. And again, I need to thank BCAN for the Patient-Centered Clinical Research Young Investigator Award, without which none of this work would've been possible. So BCAN, you know, Dr. Kamat, I don't need to tell you this, but losing a bladder is such a vital organ for patients, and when they're hit with two things, number one, the diagnosis of cancer and the idea that they have to lose this vital structure, and then have to decide fairly quickly what type of urinary diversion they need, this is a huge task for a lot of patients and it's extremely overwhelming. And while this big C-word is on their mind, they don't realize that the decisions that they're making about the diversion are going to be a really important one and it's going to last them their whole life and it's going to have a huge impact on their quality of life. And we know this, but it's corroborative with our initial patient interviews, where multiple people told us how scary and quick it was and it was a decision that they didn't really want to make and they didn't have the mental capacity to make it.
It was very stressful and some of them felt like the decision was just being made for them and it was just going fast and furious. So looking back at what resources we have, we noticed that there were over 750 decision aids out there, and almost 50 in the prostate cancer world, but there was only one out of Ottawa for bladder cancer for urinary diversions. And we felt like we could absolutely add to this and do better. So our project was to develop a patient-centered decision aid for urinary diversions and to beta test it to understand whether it actually works for patients and whether they actually like it and get some sort of preliminary efficacy data. We initially started with creating a first draft. We looked at the other decision aid that was out there, looked at systematic reviews of what is important in making this decision, and, of course, the International Patient Decision Aid Standards guidelines to meet the minimum criteria to be considered a decision aid. And this was reviewed by a multidisciplinary steering team. So I have to give a shout-out, you know Sigrid very well, she was the PI in this project. Alvin Goh is our cystectomist, Jaime and Dr. Atkinson were both part of the Patient-Reported Outcomes Group here at MSK, Vashti is our all-star ostomy nurse, and Sandy is the patient advocate and the head of the Indiana Pouch Support Group from BCAN.
I'm also extremely grateful for Dr. Bochner and Donat who, even though they were not part of the steering committees and meeting on the Zoom meetings and doing the legwork, they really spent a tremendous amount of time giving me feedback and helping us tailor this decision aid to make sure it was accurate and truly represented good and correct information for our patients. So with our initial drafts, we worked on refining this product with one-on-one semi-structured interviews to gather feedback on both content and design. And we did three separate rounds of this. So each round we went back to the steering committee and perfected it and went back again. We eventually ended up interviewing 22 patients, median age of 70. These patients were not MSK patients. These were recruited, actually, through BCAN. So these are all patients who are interested in BCAN support groups or have some touch point, have some kind of contact with BCAN. That's how we recruited them. They were 63% men, a skew towards Caucasian patients, but that's just who volunteered to help us. Six patients had ileal conduits, 12 with neobladders, and four with Indiana pouches or continent cutaneous reservoirs. We got a decent distribution of education levels. We had four patients out of high school, nine with bachelor's degrees, and a little bit of a skew towards graduate and higher education.
We also interviewed four caregivers over the three rounds. Median age of 69, 50% were male. One patient's spouse had a conduit, two patients' spouses had neobladders, and one patient's spouse had a continent cutaneous reservoir. And then we interviewed 23 physicians. By physicians I mean any sort of provider on the other side who's helping patients with urinary diversions. Sixty-five percent of this cohort was male and they were between 7 and almost 57 years in practice, with lots of different experience. As you can imagine, most of them were cystectomists. Three reconstruction people like me who are very keenly interested in urinary diversions, stoma nurses, gynecological and medical oncologists, geriatricians, a sex med expert, and an expert in decision-making and decision aids. After a good year-and-a-half, we created a 17-page curriculum here, and instead of reviewing it with you, because it's a fairly comprehensive document, I'm just showing you the table of contents. We go through a couple of pages of glossary of terms with pictures and images of the different types of terms. We go over the different types of urinary diversions with pictures, the medical factors and lifestyle factors that patients want to consider, risks and complications, and then also looking at risks and complications by diversion type. And then there's sort of a 4-page comprehensive timeline that takes a patient from right after surgery to about 1 year after surgery, what they can expect at each stage with each diversion.
And then the last part is Dr. Carlsson Sigrid, my mentor, her expertise is in this thing called GIST-based urinary diversion, which is you can take all the data and you can feel as informed as you want, but what does your gut tell you? So trying to get to patient motivations and what their gut might explain, what it might tell them. So what diversion feels right. We have estimated this to be between 20 and 30 minutes of reading time and it's all at 6th-grade reading language. So after that alpha testing was done and this product was ready, we did what's called beta testing where we are looking at acceptability, usability, and preparedness with surveys. All these surveys were anonymous. These are anonymous cystectomists who we just reached out to and were sending survey links and collecting data on whether they felt it was usable in their clinics. And 100% felt like the decision aid was accurate, balanced, and reflected what they typically discuss. I would say fewer, so 92%, felt like it fit within their clinic flow and that they would use it. And a slightly lower percentage of 83% felt like it helped save time or focus the discussion and that it was feasible to use it routinely. And the people, I think, who said that maybe it wasn't so feasible, felt like the curriculum was quite comprehensive, so they would either want patients to maybe use it after or use it before they came to clinic and didn't want it as part of their clinic flow, per se, which I respect. Again, some of these patients were recruited through MSK, but most of them were recruited through BCAN, so from all over the country. And they were all anonymous to us as well.
So we don't really have demographic data on these patients, but these patients are patients who have never had a urinary diversion but are in the process of undergoing their neoadjuvant chemo and going to be getting a urinary diversion or a cystectomy soon. So we looked at two things here. We looked at quality of the choice made and quality of their decision-making process. To make a good-quality choice, you have to be informed, and 100% of patients who looked through our decision aid were able to answer four out of five knowledge questions, which indicates that they were informed, they were adequately informed in order to make a decision. And in their quality of decision-making, most patients did feel like the amount of information, that it was right, the length was okay, it was easy to read, it was educational. And then they did give us some more feedback about it being visually appealing and attention-grabbing. I really enjoyed making this decision aid and I really hope that we are going to be publishing it here soon and people will use it, and I hope it'll help at least a few patients out there.
Ashish Kamat: Thank you so much, Divya. And once again, congratulations on the award and for thinking of this and doing it. It's something, as you mentioned, it's an unmet need and we talk to patients all the time in clinic. I just had 5 patients today I talked to about diversions, and I'm sure you do too. And having something like this that patients could go to read that's been vetted and studied, like you have, I think is really important. Because there's a lot of stuff out there, but nothing that truly, like you said, is structured the way you have it. A couple of questions for you. Again, I'm sure it's an iterative process that you're going through, but any thoughts about developing this in an electronic app-based or other format for patients that nowadays like to do those things?
Divya Ajay: Yeah, absolutely. I think a lot of people gave us feedback about how people like things in bite-size, like TikTok kind of formats. And that is definitely, with the help of AI, something we want to invest in and focus on, short videos or animation. And that would be, I think, the way I would want to take this next. I think that's how people like to digest information nowadays, even the older generation. It's not just a newer generation thing. So I think that would be definitely something to invest in in the future.
Ashish Kamat: Yeah. And I was just chatting with a group in the breast cancer world where they have an AI avatar, where the person, obviously there's a lot of data behind it, but when the patient asks the question, there's actually a face of somebody and they specifically make it not look like their doctor, because otherwise that would be odd, just like a generic nurse. But the person is actually talking to them and it's a conversation. I think a decision aid like yours in that format would really be great, because patients can then ask the question and get the answer. And again, I'm sure you've thought of all of this. Once again, Divya, thank you for taking the time. Congratulations. This is really great.
Divya Ajay: Thank you so much. I really appreciate your time. Thank you.