Motolani Adedipe, PhD, on a mobile app for Black men with prostate cancer

In this interview, Motolani Adedipe, PhD, DPh, MSc, discusses the development and assessment of a mobile app to improve quality of life for Black prostate cancer survivors.¹ Adedipe is an associate professor in the department of pharmacy, clinical and administrative sciences at the University of Oklahoma Health Sciences Center.

Motolani Adedipe, DPh, MS, PhD

This transcription has been edited for clarity.

Much of your work has been focused on the development of a mobile app for Black patients with prostate cancer. Could you share what inspired you to create this app?

The idea behind the app was to see how we can improve on the outcomes when it comes to Black men with prostate cancer. We know that the overall 5-year survival for prostate cancer is quite high. It's about 97%. But if you look at it within group differences, despite advances in treatment, Black prostate cancer survivors continue to face persistent issues, such as physical, psychological, and psychosocial symptoms that [persist] long after treatment. This underscores the need for culturally responsive interventions. We know that the mobile usage or penetration rates in our communities are quite high. By leveraging technology, we can provide a convenient, accessible, and even tailored solution to help prostate cancer survivors manage their symptoms and improve the overall well-being. We wanted to address these challenges head on and create a meaningful way to help men as they transition from diagnosis and beyond.

Also, very crucial for us was to explore the heterogeneity in Black men. Immigration keeps changing the demographics of Black populations in the US. I'm Nigerian born, but I'm also American. When I came to this country, I brought my norms and my culture to what I know currently in the US. So, I imagine that men who have been diagnosed with prostate cancer, it's a whole world they have to navigate on top of the cancer diagnosis. We know that Blackness is not a monolithic concept. In our lab, we like to look at just how these men are similar, but also different, because they have unique cultural, social, and health-related needs. By understanding and addressing this uniqueness, it can also help health care providers to offer more personalized and accessible care. Our app is designed with that in mind, ensuring that it caters to the various differences and preferences within a Black prostate cancer survivor community, while also managing symptoms, providing tailored information when it comes to health, and helping them connect psychosocially and improve mental health as well.

Could you describe the development process for this app?

We started [by] exploring what quality of life meant. So, we had a qualitative research design using volunteers. This spanned from 2020 and 2023. We brought about 34 men who make up different ethnic groups. In our lab, we looked at men from African countries, Caribbean countries, and also born in the US, because those 3 groups have the highest volume of prostate cancer when it comes to Black men. So, we did interviews with these 34 men to elucidate what quality of life meant. That brought up several factors and points that we had not even considered.

What we did next in 2021 and 2022 was conduct reviews of the literature. We conducted a thorough review of everything in the literature and identified gaps in mobile health for prostate cancer, and realized that among the apps, most of them are developed in Sweden. It definitely has implications for the applicability to the US, which has more Black men. Of all the apps that were developed, only one was still being used. So, what happened was that a lot of the apps that were developed, after the intervention, that was the end of it. This is not unusual for mobile health development; you find that a lot of apps are developed for the intervention, and once that is done, [that's it.] We wanted to change that. We want to be able to scale up and make sure that this app is available above and beyond the intervention phase.

After the scoping review and also from the qualitative interviews, we began doing the infrastructure for the app. This was done in 2022 and 2023. We conducted patient interviews, wireframe testing, using semi-structured qualitative individual interviews to refine the app content and design, because there's a lot of educational resources within the app. We're also managing symptoms; we're looking at mental health, overall quality of life, and dietetics––like exercise and their diet. We also wanted to be sure that if we built [things into the app], patients would use it. That was what helped with the formative research for the app.

For this current mechanism, in addition to testing the feasibility and accessibility of the app, we also want to assess efficacy. We'll have 2 cohorts; 1 would use the app and other one would not use the app. They'll do standard of care, whatever they were getting from the doctor's office. We're looking at men within the first 5 years of diagnosis, because from what we've learned in talking to these men is that's usually when they need most support. After they've gone through their active treatment, for men who have undergone treatment, they just do follow-up every 6 months. They usually have a lot of issues regarding urinary incontinence and sexual issues like not being able to maintain erection. It's also dependent on the kind of treatment they've had. We also have men who haven't undergone treatment at all, who [are on] active surveillance. So, there's a lot of anxiety.

This is called the Survivorship App for Ethnically Diverse Black Prostate Cancer Survivors. It was developed from this formative research, but also in collaboration with the Stephenson Cancer Center Mobile Health Shared Resource, where I currently work as well. It's a platform called Insight. It's an app designed to offer tailored information to help with symptom monitoring, counseling, and messaging. Again, by leveraging the smartphone technology, we're providing a convenient and accessible way for survivors to not only manage their symptoms, but also to connect with support resources. We hope that it empowers patients to become more proactive in their own care and offers tools for them to monitor and manage their health. For a lot of men, especially Black men, there's a lot of shame that comes with prostate cancer. By helping them see what could be going on with their health and knowing when to reach out for help, we think that's a fantastic way to begin to change the paradigm when it comes to men and prostate cancer in the US.

Could you expand on what is included in the app?

There are 6 contents within the app. They're also adaptive content. [That means that] anytime during the day, users can go learn more about self-management of sleep, or stress, or how to eat better. For men who have undergone some kind of treatment, they may lose muscle mass, so we have curated information that can help them in gaining some of that back. And depending on how they respond to, for example, pain or blood in urine, it can alert the oncology nurse who is part of our team as well to check in on them within a reasonable timeframe to see what's going on. They also check in and follow up with, "how did the appointment go? Is there anything else you'd like to help with?" With those behaviors with time, we hope to help men get comfortable [with the idea] that help really matters and is very necessary. We want them to live their best life and be in their most healthy form. We know from studies that men don't do very well when it comes to health check-ups.

So, we're testing this in a single trial, which was funded by the Department of Defense, through the Health Disparities Research Award. We are also working with a diverse team of experts in quality of life outcomes in health equity research, mobile health, community engagement, psychology, and also with an Advisory Board of Black prostate cancer survivors. These are men who have survived prostate cancer, and they drive everything we do. The idea behind the app, how we went about doing, how we will disseminate the information, how we put men into the study, how we interpret the data, what we do with the data––they inform all of that. This trial will specifically evaluate the efficacy and the usability of the app among those ethnically diverse Black prostate cancer survivors.

The primary outcome measure would be improvements in symptom management, quality of life, and patient engagement. We hope to recruit up to 250 ethnically diverse Black men. Half will use the app, and the other half will be the control group. By the end of the year, we hope that using the app will help them change behavior around what it means to be proactive about your health, and to explore quality of life, symptom monitoring, and other health outcomes.

How are you hoping that urologists use this tool in their practice to help their patients?

The hope is that this is not just going to be one [and done]. I think there's a lot of good that comes in talking about issues that affect men, especially considering the odds of survivorship of prostate cancer is quite high. Again, if you look at it within group differences, what survivorship means really differs from man to man. They might have survived the cancer, but [they have] not been able to lead their best life or even achieve maybe other things––provide for their family or being their best self––that can impact their overall quality of life.

For urologists, the hope is to present an innovative approach to supporting Black prostate cancer survivors. We don't want to stop there; we hope that it can also be a stepping stone for looking at other groups that may have been underrepresented in research, or even underrepresented in clinical trials as well. By integrating this app into their practice, urologists can also offer the patient the resources that are specifically designed to address their unique needs and challenges.

When we did the qualitative interviews, when men are diagnosed with prostate cancer, they always say, "I don't really remember what happened afterwards. I just felt like once I heard a few words, it was like a death sentence." So, when you see like a Nigerian man in front of you nodding his head when you're telling him about a particular treatment, chances are that he's not even thinking about what you're saying; he's thinking about what's going happen to his family. Even understanding the cultural differences between groups of men coming to you and just the importance of cultural awareness is something I’d add to that.

This app is not replacing traditional care, but we think it could be an adjunct to traditional care, providing continuous support and monitoring that can enhance good outcomes. There's a part of the app that can allow patients to put in when they score poorly on pain or blood in their urine. The provider can also get those triggers, and that could also give them an opportunity to reach that patient. The app design and deployment can also align clinical workflows and patient needs. We would like to explore continuous feedback, comprehensive training, and even customized deployment plans that can help seamlessly integrate this into clinical practice.

With innovation changing the demographics of Black populations in the US, it's really necessitating that providers cannot be using that one-size-fits-all approach. We have to be able to provide culturally responsive care for the patients that we're serving. We hope to also expand our line of funding to create a sustainable impact on quality of life for Black prostate cancer survivors. The number of men living longer, especially Black men, is getting more and more.

The risk factors for prostate cancer are being Black, having a family history of it, and then older age. These are things that you cannot change. We hope that by improving the narrative around what it means to be Black, and also improving our cultural [care for] prostate cancer survivors, we can bridge that gap between research and practical, scalable health care solutions. We think it's very important to engage urologists, not only for the current implementation of the app, but also for the future. We will look forward to working with many providers, not just urologists, to ensure continuous stakeholder engagement to refine and tailor the app and make it very user friendly and user centered. My goal is to have the app in such a way that when a man is diagnosed, when walking into his doctor's office, it's part of the conversation.

Is there anything else that you’d like to add?

I would just like to emphasize the collaborative nature of this project. In the work we've done in our lab so far, we have relied heavily on the expertise and the passion of our multidisciplinary team, and the invaluable insights from our Advisory Board of Black Prostate Cancer Survivors. We meet once a month, and they drive all of our research agenda. They have really ensured that the app is not only scientifically robust, but also culturally and contextually relevant. They are passionate men who are also strong advocates in their community; they've gone through the struggles of having prostate cancer, but they haven't let that hold them back. They're very passionate about impacting the younger generation to ensure that they are not just talking about prostate cancer, but about health in general, helping men get comfortable with going to the doctor every year to get their health check-ups. Our aim is to reduce health disparities and improve quality of life for Black prostate cancer survivors, making health care more equitable and accessible for all.

Reference

1. A mobile prostate cancer survivorship app for Black men: Pilot study, addressing health disparities among Oklahoma minority and rural communities. University of Oklahoma Health Sciences. Accessed August 9, 2024. https://healthpromotionresearch.org/Active-Studies/a-mobile-prostate-cancer-survivorship-app-for-black-men-pilot-study-addressing-health-disparities-among-oklahoma-minority-and-rural-communities