Our results are organized as follows. First, we provide context through an overview of sample demographics and patients’ qualitative self-assessment of their usage and comfort with digital health tools. Second, we describe patients’ uncertainty stemming from the current standard of follow-up care, persisting structural gaps despite new modalities for communication, and how patients actively manage their wellbeing but desire more system support. Third, we describe patients’ perceptions of the appropriateness, acceptability, and feasibility of the Ned Nurse clinic, and the need to support patient self-management.
Participant demographics and digital device use
The average age of participants was 66 years old. The majority of participants self-identified as white (n = 7, 70%), while a smaller number identified as Black or Asian (n = 3, 30%). All were retired and in married or common-law relationships. All participants felt generally comfortable with their digital devices, with a preference for desktops and laptops (n = 6, 60%). They frequently used their digital devices for seeking information (n = 10, 100%), storing information (n = 10, 100%), communicating (n = 8, 80%), scheduling (n = 8, 80%), and leisure activities (n = 8, 80%). Half of the participants (n = 5, 50%) also used their devices for health services.
The current standard of follow-up care creates uncertainty for patients
Participants perceived that standard follow-up care encompassed scheduled visits with their specialists (e.g., oncologists, urologists, surgeons) with bloodwork measuring prostate specific antigen (PSA) levels, which is standard clinical protocol in Ontario 29. These visits previously occurred in-office, but largely transitioned to telemedicine (i.e. phone calls or video-conference) during the COVID-19 pandemic. In some cases, a significant portion of active surveillance was conducted by general practitioners, who acted as the first point of care for symptom assessments. Patients felt reassured by the anchoring of the visits, as they acted as confirmation from a trusted medical professional in regards to their prostate cancer status.
“I guess it's just the reassurance you hear from doctors. Although I know what my PSA was, that's fine. It's also good to hear reassurance from the medical professional.” - P002
However, they also felt a lack of clarity on several key care expectations, which affected their perception of the quality of care they received. Some communicated that they were frustrated with unclear timelines for the resolution of symptoms, especially if these symptoms persisted years after they finished treatment. Disappointment and anger were expressed when patients felt that their concerns were dismissed by their provider. They were frank about the perceived inadequacies of their care. These included different patient-provider expectations for treatments for side effects, different perceptions of symptom severity and quality of life impact, unclear timelines for the recovery of physical function, and ambiguity regarding the responsibility to coordinate care communication and health record documentation.
“I would like to have known what was going to happen after in a lot more detail... [my specialist] said, you're going to have some trouble with erectile dysfunction. You're gonna have trouble with incontinence but all bodily functions will return over a period of time... but there's no timetable given for that." - P006
Systemic gaps persist despite new telemedicine modalities
One benefit of telemedicine spotlighted by participants was the ability to communicate with their specialist in new ways beyond in-person visits. Patients believed that enhanced communication pathways would increase their access to their specialist - particularly valuable for participants living in rural or remote settings. Additionally, asynchronous methods of communication (e.g., email) and access to blood work requisitions without an in-person visit were deemed more efficient.
“Because of COVID, I guess everything we do right now is, initially there's an email. You send an email and … we get a very quick response. Like within a day or so if not the same day.” - P008
“When I have my PSA I'm subscribed to like I do it through Life Labs so ... I don't wait for the doc... I just go on and get it right away.” - P010
Although increased access was identified as a benefit of telemedicine, participants continued to report that they experienced gaps within the current healthcare system, including a general impression that there were insufficient resources to deliver high quality care. Some participants attested that long wait times for follow-up appointments continued to persist. Additionally, the focus on recurrence persisted through the move to telemedicine. This was compounded for those with infrequent (e.g., annual) follow-ups, who generally reported more negative experiences and perceptions about their care.
“I would say [the telemedicine visits are] a minute, but let's be charitable - two or three minutes. …I mean, it's it's basically ‘Your numbers are your numbers. Your numbers have been good. Do you have any problems? No, I don't have any problems right? Yeah thanks’” - P010
Patients manage their wellbeing but desire more systemic support
Within the current specialist-led system, patients noted that symptom self-management was an informally-communicated responsibility that they learned about from peer support. They felt that symptoms and after-treatment effects (e.g., erectile dysfunction, incontinence) were ignored unless they persistently sought provider attention.
“The biggest thing I learned again through my support group was... the hospital will spend the time with you, but it's up to you [to ask questions].” - P002
“The one thing that having been involved in a, uh, with peer support groups is that you learn an awful lot about being your own best advocate.” - P010
Moreover, participants reported “roller-coaster” psychological needs during the cycle of diagnosis, treatment, and follow-up care for PCa. Anxiety and worry about cancer recurrence were most frequently mentioned. Typical coping mechanisms included mindfulness and keeping an optimistic mindset.
“I would be really stressed out and then I would have my PSA test and then I would be even more stressed out waiting for the results and then I would get the results and then I would sort of come back down off the ledge ... it was sort of through psychotherapy and through self-reflection and evaluation, I decided I didn't want to be on that roller coaster every three to six months... I'm just gonna live today and live healthy today.”-P004
Participants were mindful of the “value in taking responsibility for your health” (P001). They reported that they strived to maintain healthy habits (e.g., exercise, diet, mindfulness, weight control, adequate sleep, family and social participation). This also included increasing their knowledge about living a healthy lifestyle, changing unhealthy behaviours, careful examination of medication intake, and making shared decisions with their HCPs. In particular, they described the need for connection and community through social support from family and the PCa survivor peer community.
“Especially that we're on things like quality of life which unfortunately, and you know, they I don't think the industry covers that completely. Everyone talks a good game, but it's not really covered...” - P001
“Surprisingly, when you share [your diagnosis] we find out about all the other people who has had prostate cancer or knows someone who's had prostate cancer.” - P004
Virtual care through a digital therapeutic: Assessing patient readiness
Patients want a nurse-led model to incorporate existing care connections
Patients perceived the Ned Nurse clinic as an acceptable care model and expressed their interest in the value added through this service. They hoped that this systemic change would increase the system’s ability to provide holistic care and wellbeing support.
“What I'm hoping in this Ned is that the nurse practitioner would then take an interest in the well-being of the patient. You know, I can actually discuss what I'm going through and feel that there is going to be some follow up.” -P001
These favourable perspectives also come with important considerations about personal preferences regarding the modality of their visits and strategies to manage continuity of care. Some expressed that they would be comfortable with only seeing a nurse, but would prefer one nurse for continuity of care rather than several staff rotating through the position. Others wanted to involve their specialist in their care to continue the relationship.
“I wouldn't mind waiting to see the doctor... I'm old fashioned that way ... I guess it's that human interaction I prefer ... As time goes on [younger men will] get into more technological means of communication. They’ll get used to it, but, I guess I'm in the old fashion group. I would still prefer seeing a person.” - P001
A nurse-led clinic should focus on supporting patient self-management
Patients envisioned a nurse-led clinic as support that would provide “somebody to… listen to your concerns and point you in the right direction” (P005). This support included education, resources to support wellbeing, and building community through peer support. Notably, they desired additional educational support beyond what the current system provides.
“Yeah, I think education [would] be great ... You can go through and you can pull all of this stuff together on the Internet yourself. But ... my clinic may have a different protocol ... or slightly nuanced or something so it would be good to get it from one place.” - P009
“So, if you’re in Toronto, they say there's always the PCa support [groups] through Toronto or Oakville or whatever ... Support groups you know or other information, would that be in your library too. ” - P002
Virtual nurse-led care facilitates self-assurance but must address accessibility
Speaking to patients’ perceptions of the appropriateness of a nurse-led model of service, they perceived the model being appropriate because: (1) they felt that nurses were a logical first point of contact, (2) the Ned Nurse clinic was compatible with their existing care workflows, and (3) they saw the value added and peace of mind of being able to connect with a nurse to manage their symptoms.
“I think what is most important is the psychological advantage of feeling that yes, there's someone I can come [to], I can contact and who will respond fast ... It gives you, I guess a little more confidence.” - P003
Patients also described the desire for inclusive support to mitigate care accessibility barriers. Patients indicated not only was it important to identify highly qualified personnel, but there were important health equity requirements for bridging the digital literacy gap (e.g., voice recognition and guidance). Patients noted considerations needed for lower barriers for older adults and groups on the other side of the digital divide.
“You know these are older guys... if something is not working, they probably tell one of their kids or grandkids… they wouldn't go to the support site and chat with the bot themselves... So if you can keep it as simple as possible and as intuitive as possible, that would make it easier.” - P003