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A Mobile App to Address Sexual Dysfunction in HSCT Survivors: Areej El-Jawahri, MD

After receiving hematopoietic stem cell transplantation (HSCT), many survivors experience issues with sexual dysfunction which can impact their quality of life. To address this challenge, Dr. Areej El-Jawahri, Director of the Bone Marrow Transplant Survivorship Program at Massachusetts General Hospital (MGH), and her team developed a multimodal mobile app as an intervention for sexual health concerns after transplant. After presenting this research at the 2023 American Society of Hematology (ASH) Annual Meeting, Dr. El-Jawahri sat down with Oncology Data Advisor to further explain the app's development and efficacy, as well as additional ways it can be used to improve quality of life for transplant survivors in the future.  

Oncology Data Advisor: Welcome to Oncology Data Advisor, I'm Keira Smith. Today, we're at the ASH Annual Meeting, and I'm speaking with Dr. Areej El-Jawahri. Thanks for coming on the show today.

Areej El-Jawahri, MD: Thanks for having me, Keira. My name is Areej El-Jawahri. I'm one of the Oncologists at the MGH Cancer Center, and I run our Transplant Survivorship Program there.

Oncology Data Advisor: Awesome. Today, we're talking about your study, "A Multimodal Mobile Application to Address Sexual Dysfunction in Hematopoietic Stem Cell Transplant Survivors." To give us a little bit of background about the basis for this study, how does sexual dysfunction affect HSCT survivors?

Dr. El-Jawahri: Yes, it's a great question. Sexual dysfunction is actually the most prevalent and common issue affecting transplant survivors. It's actually a very common issue in cancer survivors at large. Both autologous and allogeneic stem cell transplant survivors, however, suffer even more so than other cancer survivors from sexual health issues. We know that sexual health concerns are hard to bring up for patients with their clinicians, so often they're underdiagnosed and underappreciated. But they really do have a lot of effect on patients' quality of life, intimacy, and relationship with their loved ones, as well as potentially psychological distress as a result of sexual health issues. So, we know they're underdiagnosed, and we know they're underappreciated, but they're incredibly common.

Oncology Data Advisor: I'm looking forward to hearing about this app. How did you go about designing it along with your team, and what was your goal for it?

Dr. El-Jawahri: I think, Keira, that one of the main issues we've learned from our patients is that 1) it's hard to talk about these issues with your clinician, and 2) we know that our clinicians, specifically transplant clinicians, may not have all the training to address sexual health concerns for patients. A while back, we had actually done a pilot study where we took transplant clinicians, including nurse practitioners and physicians, and we trained them to ask basic questions to identify if a patient is having any sexual health concern and then try to intervene at least on the biological causes of sexual health concerns. Common in male transplant survivors is erectile dysfunction, and sometimes they can have genital graft-versus-host disease. In women, we see a lot of vaginal atrophy. As a result of estrogen deficiency, we see a lot of hormonal changes, as well as vaginal graft–versus-host disease.

We literally had the clinicians just do some basic biological interventions to address these issues that are really common. We saw that we were able to move the needle in terms of patients' sexual health and overall satisfaction. Based on that information, we asked ourselves, "Is there a way to augment that intervention by actually allowing patients in the privacy of their home to engage with an app that provides more than just addressing the biological causes of sexual health issues?" For example, are there ways of providing intimacy exercises, ways for patients and their partners to actually engage in the privacy of their home, and ways for them to first understand the sexual health recovery post-transplant, but also what can they can do to make it better?

We actually engaged with sexual health experts and psychologists, we brought in transplant clinicians, and we worked with patients who've gone through stem cell transplant. We tried to come up with an intervention, and we wanted something that's really comprehensive and addresses the biological, emotional, psychological, and social causes of sexual health concerns. We developed this really fun app that is set up as kind of a game, if you will, where the patient goes through a journey in their home. They start in the garden, and they end up in the master bedroom after eight weeks, which is a nice analogy to what we are hoping to achieve.

A lot of it is focused on enhancing non-physical intimacy, which is a really key factor for patients after transplant. After transplant, patients lose touch with their partners, and often the partners are playing a role as a caregiver rather than an actual intimate partner. A lot of the focus is on gradually increasing non-physical and physical intimacy, taking emphasis away from sexual intercourse, especially early-on, because some transplant survivors may have a really difficult time having intercourse immediately after transplant. So, that's what we did. It's been a really fun journey, to be honest with you, to work with a transdisciplinary group of clinicians and researchers to develop this app.

Oncology Data Advisor: That's such an amazing idea and such a creative way to address this problem. How effective was the app, and how did the patients like using it?

Dr. El-Jawahri: So, we asked two questions. The first question was, is this feasible? Are we crazy, or is this doable? Can we get these patients to actually engage meaningfully with an app and can we actually move the needle? What we conducted is a randomized pilot study where we took 60 transplant survivors. Half of them were randomized to just having a brief visit with a transplant clinician to address the biological causes of sexual health issues. The other half had that exact same visit followed by access to this app for about eight weeks. The first question we asked was, will patients actually use it?

What we learned is that patients did use it. About 70% of patients actually completed all five modules in the app, which for any digital health intervention, to be honest with you, is a really, really high bar. Then more importantly, we saw a really promising signal of the app actually working and adding to the experience of these patients. We noticed that patients who received the app had better satisfaction with sex, interest in sex, pleasure, orgasm, as well as, interestingly, improvement in their quality of life and reduction in their depression and anxiety. Actually, in follow-up analyses, we're trying to examine whether the improvement in sexual health outcomes mediated the improvement in quality of life and distress. We think that patients' improvement in sexual health is actually the reason why they're feeling better overall and having less psychological defense and better quality of life.

So, that's what we initially saw. We are hoping to expand this to a multisite trial in the future. The goal would ultimately be to really have this as a potential digital therapeutic—a prescription that a patient could receive after stem cell transplant to address any sexual health issue. That's our goal for this line of work. What was really amazing though, Keira, is the qualitative feedback that we've gotten from patients about this. One emphasis that we've heard from patients is that it's really, really helpful for them to be able to engage with this in the privacy of their own home. Even patients who are reluctant to bring up issues to their clinicians loved having the access to this at home, because not all of them feel comfortable to bring it up or talk about it in the clinic—which is fantastic that at least something is happening.

Then the second thing is we heard from patients that they love using it. Even after the study, we have some patients who continue to use the app and want to keep it to enhance their sexual intimacy with their partner. And I should note that the app is really all-inclusive. We have all types of sexual orientation and all types of genders that are included in the study. We also have some transplant survivors who are not partnered, who still chose to participate in the study and go through the app. The app content is really tailored to your sexual orientation, your gender, and your relationship status to allow a more inclusive experience.

Oncology Data Advisor: That's really incredible, not only how well-received it was and how much the patients enjoyed using it, but also that it was able to produce these results. Congratulations on developing such a great app.

Dr. El-Jawahri: Thank you. I'm really hopeful that it'll address a very, very common problem, and we could potentially adapt it in other ways. What I've learned from doing this work is that this problem can really impact other cancer survivors and patients who receive adaptive cellular therapy or chimeric antigen receptor (CAR) T-cell therapy. This is a common problem in our field, and I could easily see us being able to adapt this app for use in other populations.

Oncology Data Advisor: I'm sure there are so many different avenues that you could adapt it into. Do you have anything else you'd like to share, either about the app and your work in this field or just general ways to help support HSCT survivors who are experiencing sexual dysfunction?

Dr. El-Jawahri: I just appreciate you taking the time to interview me for this. And I really do appreciate the fact that we are seeing more and more work that's focused on the lived experience and quality of life of transplant survivors. I do think that often in a lot of these conferences, we focus on curative therapy, which is fantastic. We have more and more people who are cured and living longer lives, but they're really struggling. They're struggling with issues that affect them each and every day. We just need more emphasis on strategies and interventions that are scalable and can actually move the needle. I hope this is one step in the right direction.

But as you know, transplant survivors struggle with a lot of issues. We have a lot of psychological distress in our population and trauma as a result of the transplant experience. We also have a lot of patients who become deconditioned after transplant. They need a lot of rehabilitation to get their physical strength and stamina back. Fatigue is a very common issue in our transplant survivors, as well as a lot of issues affecting our survivors who are living with chronic graft–versus-host disease. I think there are many other things we could be doing to improve the lives of our patients and their families, and I hope we continue to do this kind of work.

Oncology Data Advisor: Absolutely, it's such a fantastic start and I look forward to seeing all the uses of the app in the future. Thanks for stopping by to talk about this today. It was wonderful to hear about.

Dr. El-Jawahri: Fantastic, thanks for having me.

About Dr. El-Jawahri

Areej El-Jawahri, MD, is an Associate Professor of Medicine, the Associate Director of the Cancer Outcomes Research and Education Program, and the Director of the Bone Marrow Transplant Survivorship Program at Massachusetts General Hospital. She specializes in the care of patients with acute leukemias, myelodysplastic syndromes, chronic leukemias, lymphomas, and myelomas, including those undergoing hematopoietic stem cell transplantation. Dr. El-Jawahri's research focuses on patient-reported outcomes, patient-centered decision-making interventions, and models of health care delivery for improving patients' quality of life and clinical outcomes during treatment or transplant for hematologic malignancies.

For More Information

El-Jawahri AR, Reese J, Traeger L (2023). Multimodal mobile application to address sexual dysfunction in hematopoietic stem cell transplant (HCT) survivors. Presented at: 2023 American Society of Hematology Annual Meeting. Abstract 5142. Available at: https://ash.confex.com/ash/2023/webprogram/Paper185776.html

Transcript edited for clarity. Any views expressed above are the speaker's own and do not necessarily reflect those of Oncology Data Advisor. 


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