Our qualitative analysis aimed to explore HCP experiences with providing PCa follow-up care while contextualizing their perceptions of the acceptability, appropriateness, and adoption of a potential nurse-led PCa virtual follow-up care system to provide digital healthcare. This was grounded in HCPs’ qualitative self-assessment of their usage and comfort with digital health tools within their scope of practice. We first outline the complexity of PCa follow-up care from the HCP perspective. Then, we outline the technical and clinical expertise needed to deliver standard PCa follow-up care and insights into how a nurse-led model of care can be structured. Lastly, some key digital literacy considerations and clinical, technical, and implementation requirements identified by HCPs are introduced.
Follow-up care can be fragmented and difficult to coordinate
All HCPs spoke to their specific tasks and domains of care during their interviews, which resulted in a clear pattern of provider follow-up tasks. Immediately post-treatment, care includes assessment of patient responses to their treatments, pain and symptom management, patient education, and psychosocial support. In the longer term, care proceeds according to specialist-designed surveillance protocols, and symptom assessment plays a major role in follow-up care. Care decisions were primarily made by assessing patient symptom severity. If these assessments were completed by non-physician HCPs, they were reported to physicians for further consultation with patients about treatment when appropriate.
“We have... a triage line that patients can call and it can be about anything, it could be about their appointments, it could be about any of the symptoms... they will speak to a nurse, report whatever is going on...then that message will get sent to the primary nurse and then the primary nurse will have to review the information. If she can answer on her own she’ll let the patient know. If she requires some sort of consultation from the physician she’ll get in contact with them.” (HCP001)
HCPs noted that the complexity of PCa follow-up care delivery necessitates a multidisciplinary care team led by a specialist. Team members can include physicians, physician assistants, nurses, physiotherapists, dietitians, social workers, genetic counselors, and patient care coordinators. Often, follow-up care is managed across specialties. One patient’s treatment and follow-up care may encompass surgery, radiation, and hormone therapy or chemotherapy. This complexity requires careful coordination and networking of care across these specialist teams and sometimes with external institutions, as not all hospitals are able to offer these services in one place. These patients are required to travel to other hospitals to receive treatment, which can complicate inter-provider communication and patient record-keeping.
Scoping a nurse-led clinic should be a focus on the management of care and referral as needed
HCPs judged a nurse-led follow-up care model for PCa to be an acceptable, feasible, and appropriate mode of delivering care. HCPs most often indicated that a Registered Nurse (RN) would have the appropriate scope of practice to act as the central point of contact for a virtual nurse-led survivorship platform. Some indicated a preference for an Advanced Practice Nurse (APN) or Nurse Practitioner (NP). However, these expressions were often accompanied by caveats regarding the amount of experience a provider might have delivering genitourinary oncology care. Above all, participants were clear that they viewed the scope of this role as one of assessment, management, coordination, and escalation. A nurse in this role would need to understand when to escalate care to the appropriate care provider, but would primarily manage all non-emergent situations.
“The nurse can definitely do an initial assessment... I think it is within our process to understand the main [providers]... involved. And also in terms of providing emotional support… this is something that the nurses can also be involved in. But anywhere where you would need…diagnostic measures, the testing or medications prescribed, that would something that would need to be escalated.” (HCP002)
Virtual care through a digital therapeutic: Assessing system readiness
Despite an ambivalence for current digital health tools, providers see the potential
HCPs perceived potential barriers to the further spread of digital health tools within their workplaces, many as a result of their prior experiences with virtual care. The pandemic ushered in a drastic shift towards delivering many services through virtual means very quickly, most often through telehealth modalities. The cognitive load of virtual care continued to be high. HCPs found themselves needing to provide support outside their scope of clinical care, such as technology support, to patients who were not comfortable with virtual care. These factors resulted in wariness towards these tools, as trust was not established with these HCP users during the initial implementation phase at the start of the pandemic. Furthermore, participants did not indicate that efforts were initiated to create this sense of trust after the use of these tools became standardized. Preserving the preferred level of work and life balance was more difficult because virtual care opened up access to work from home. Other participants expressed anxiety that moving towards a virtual model of care would fray the therapeutic relationship between provider and patient, resulting in decreased continuity of care.
“So using [virtual care tools]… talking and talking and talking and describing and making sure that they understand… speaking in layman terms and going over and over again, relaying results, making sure that the patient doesn’t freak out or get you know, super worried about something. It was just exhausting for me.” (HCP010)
However, participants also recognized the potential for virtual care to drastically restructure care, enhance care access, and improve patient experiences. Despite ambivalence towards their current use of these tools, HCPs noted that virtual care could provide benefits to patients, such as the ability to deliver mental health support to survivors and provide them with opportunities and flexibility to seek care when needed.
[The Ned Nurse Clinic] could definitely help them feel like they are in control of their care. I feel like a lot of patients feel like they don’t know what’s going on…there’s always that behind the scenes that happens with the nurses and the doctors, but the patients aren’t always in that conversation... having that ability to have continuous care would give them the feeling that they are in control of their care. HCP003
…definitely improved access to care. Some people aren’t able to travel that quickly and, given the pandemic, people are scared to go places, especially people who have gone through chronic illness… travel can be difficult, especially for those that live somewhere more remote. So I feel it’s definitely improved access to care. It also makes it, you know, this goes along with that, but it makes it easier to follow up with a patient. HCP005
HCPs seek support for patient digital literacy to avoid barriers to care
Participants raised concerns regarding the feasibility and appropriateness of virtual care for patient populations. HCPs indicated that most PCa survivors are over the age of 50 and are unlikely to consider themselves digitally literate. Additionally, providers were concerned about the effect of the digital divide and the possible inaccessibility of a virtual care tool to some groups. Specific to the patient population, HCPs named concern that prostate cancer survivors are a group of older men placing them in the digital divide due to age and gender. However, they also expressed that with proper resources and support, they were confident that patients would be able to take on the responsibility of using digital healthcare.
“I think the patients who don’t really use that type of technology ... might not be so up to doing it that way without proper enforcement and helping them learn the ropes of how to do it ... but most patients are pretty receptive to doing things, in terms of reporting their symptoms because they know that it’s beneficial for their care.” (HCP001)
HCPs see the opportunity for improved continuity of care but are concerned about patient expectations and potential for burn-out
When speaking to the possible benefits of a digital health platform, HCPs identified two main considerations. First, HCPs described the requirement for potential technological capabilities to support their role, asking “will it make my job easier?” Second, they named ease of use: “is it intuitive and easy to use?” HCPs stressed the importance of ease of use for both providers and patients, with lack of usability identified as a common friction point.
HCPs shared that a digital health model can support strengthening of continuity of care and communication. Most survivors are given appointments with increasing intervals of time in-between, based on the amount of time elapsed post-treatment and symptom management experience. A follow-up platform that incorporated both scheduled check-ins and the ability for patients to contact their provider independently was identified as an optimal system. It would capture patients who might be symptomatic or are reticent to contact their provider outside of scheduled appointments. However, participants emphasized the need for any platform to provide appropriate training for patients to manage expectations and prevent provider burnout. This would include communicating and enforcing boundaries to ensure that patients understand the limitations of the platform and service. Examples include clarifying the Ned Nurse’s hours of availability, and ensuring that patients understand that responses to their queries are manually written by a person, not instantly generated.
“I see value in having scheduled video calls.... I think that that just helps situate patients [so] that they don’t fall through any cracks. They don’t get to the point where they need quick intervention if something’s caught early or if they’re proactively addressing concerns rather than having to be reactive.” (HCP006)