The connection between the patient/non-patient experience domains and the pandemic.

The motivation to engage as a cancer patient with the healthcare system emerged as motivated by the preservation of the roles and relationships in the non-patient domain. The benefit of receiving treatment in the patient domain was described in terms of the years or months expected to be added onto one’s lifespan, or the chance of cure. This was commonly linked by participants to the desire to continue to participate in the activities that gave their lives meaning. Occasionally, engagement with the healthcare system was related to external pressure from friends or family:

… even at the beginning, when I got that diagnosis I had already decided not to take treatment. […] So, then my [spouse] really, really wanted me to take the treatment. So I said, OK, I’ll take it for whatever. (Participant #23)

How fit impacts the aspects of the patient’s life occurring in the non-patient experience domain is variable and emerged as related to the number and flexibility of roles in the non-patient domain. Poor fit was identified to result in a higher level of disruption in the non-patient domains of those living with dependents and/or actively involved in the workforce pre-diagnosis. For instance, one retired patient with no dependents described the impact on their life following a cancer diagnosis as restricted to limiting their ability to travel and participate in hobbies, which was not described as a major loss (Participant #24). In contrast, a younger patient whose employer had allowed them to work from home while receiving treatment described their loss of connection with their workplace:

You feel like you’re really missing out because you’re at home and they’re all having lunch, and they’re–I don’t know, you just feel like you’re missing out on things. You’re not important enough, you’re not doing your job, you’re not doing your part. […] I know I was doing a lot from home, yet it doesn’t seem like it when you’re not there in person. (Participant #21)

For patients experiencing cancers in the curative context, the COVID-19 pandemic was identified as resulting in decreased disruption in the non-patient experience domain of their lives. Participants identified that the pandemic had stopped, or slowed down, many of the social and work activities that would have otherwise been going on. In a sense, there was less that they were missing out on while receiving treatment than if they would have been diagnosed and treated for cancer during non-pandemic times:

Having the pandemic at the same time, maybe reduces the overall impact […]–if the pandemic had come separate from my cancer treatment, then that would have been two years shot. (Participant #27)

For those being treated with non-curative intent, the pandemic resulted in a loss of opportunity for participating in meaningful activities and events like travelling and spending time with friends and family:

[As] the disease progresses and I get ill or more ill, I can’t get back that time. So instead of, you know, enjoying things with–I have three grandkids and like most grandparents that’s a highlight of my life. I really have struggled with the fact that I can’t spend as much time as I’d like to with them. And the same with my own children and their partners. So, I actually am somewhat bitter about COVID for that reason. (Participant #10)

The experience in the non-patient domain for informal caregivers supporting those living with incurable cancers was also impacted by the pandemic. Many of the informal caregivers identified loss regarding inability to travel and engage in social activities with the patient they were supporting. One informal caregiver described the experience of not being able to have their family together due to public health social distancing measures:

I can tell you that there’s been a lot of frustration with something as simple as Christmas day. So, those times have been stripped away from this family–I can only speak about our family–where you were not allowed to, you know, attend somebody’s home. […] Birthdays have been stripped of that nature, as well. And those are really, really important milestones for a [parent dying of cancer], and for me watching it, it’s really not acceptable. (Participant #36)

Physical characteristics and biomedical assets.

Three sub-types of fit between physical characteristics and biomedical assets were identified: 1) location of biomedical assets and the patient, 2) diagnosis and disease, and 3) treatment and disease.

Location of biomedical assets and the patient: Accessing healthcare. Geographically, the closer biomedical assets are to the patient, the better the fit. For instance, a patient in his 80s described the impact of recent changes to the location of where his treatment was being administered–a change from what can be described as a move from a better to worse fit:

Well right now I’m at [hospital #1] with my treatment and that’s oh five to 10 minutes away from where I live. So, it’s great. But beginning next month they switched me over to [hospital #2]. And that’s about a 45-minute drive [both ways] for us… It’s the winter time, if it was spring, summer or fall it wouldn’t be a problem. [But now] it could be a problem just because of weather. (Participant #3)

The ease of physically navigating facilities housing biomedical assets is also contained in this category of fit. One participant shared the experience of being at an unfamiliar cancer center that was challenging to navigate. They described their experience as they rushed to meet a new clinical team for the first time as follows:

My first experience was, “Oh my goodness, is this the kind of ship they run, it’s leaking, and boy, I want to get off before it sinks.” […] there’s so much anxiety […] they give you a number, they don’t tell you what it means, you either get a P number, an E number, […] but it doesn’t tell you what you do when that number flashes by, and what it means, and even where to go. (Participant #33)

The introduction of virtual care in response to the pandemic was identified as having a mixed effect on fit. While additional ways in which virtual care impacted fit are discussed in the following sections, virtual care was identified to improve access to healthcare providers. In particular, the elimination of the need to travel to healthcare centers to meet with physicians was consistently identified as increasing convenience:

For me it was absolutely fine, it felt very comfortable. And because I live remotely it was nice that I didn’t drive the hour in to kind of go through, going into a hospital and everyone is a little anxious now and we’re all wearing masks. Just to be able to sit in your living room. I happened to be in my car. And I just kind of pulled over and had a conversation. So that was nice, I actually preferred it. (Participant #15)

However, virtual care also introduced technical complexity and additional opportunities for fit to be compromised unexpectedly due to a poor connection. Unfamiliarity with the videoconferencing platform being used by clinicians, poor computer literacy, and poor cellular and wi-fi signals were identified as challenges participants experiences to receiving effective virtual care. One participant identified that the videoconferencing platform used in their virtual appointment was not compatible with their hearing aid, resulting in them not being able to exchange information with the healthcare provider (Participant #1).

Diagnosis and disease: Identifying and characterizing disease. Throughout the cancer journey, patients described seeking medical attention to obtain a diagnosis following the development of new symptoms or following abnormal screening results. Patients who described a straightforward path from initial presentation to diagnosis, such as when a routine cancer screening mammogram leads to a tissue diagnosis in a matter of weeks, provide examples of good fit between the biomedical assets needed to make a diagnosis and disease. When poor fit occurred, the journey from initial concern to diagnosis could take many months. One patient, who described their journey to diagnosis taking almost a year including multiple rounds of imaging, bloodwork investigations, biopsies, and a major diagnostic surgery, shared the following:

Mentally I kept trying to think of what my next steps or the next possible steps might be because that’s kind of my personality. I’m a planner and that’s a hard thing when everyone is unsure of what kind of cancer you have. So that part is hard for me but I think it’s probably hard for everybody to just know that you’re just not making any plans until there’s some official diagnosis. (Participant #10)

While fit in terms of access to healthcare providers was not identified to be significantly impacted by the pandemic, obtaining prompt and accurate diagnosis for a previously undiagnosed physical condition was. Participants shared a number of examples where virtual care, and the lack of a prompt and appropriate physical examination, was perceived to result in a delay in reaching an accurate diagnosis. This is illustrated in the following quote, where an appropriate physical examination led to a cancer diagnosis but only after an initial delay due in part to a virtual assessment:

… I had a phone conversation with my doctor. … And [the doctor] basically told me all the things that I had already done, [they] told me to keep doing them, and I said, “Well, I’ve already been doing that,” and [they] just sort of–I guess it was protocol for [them] to just say to do that, to not take it seriously […] and I thought, this is crazy, like, if I have cancer, I’ve had it for a while now. So, I called back and tried to get an in-person visit so that they could actually see what was going on. And I was able to get an appointment with somebody else in the clinic, who did an examination within a few days, and sort of immediately sent me [for imaging]. (Participant #38)

However, it was also identified that care provided in person had the potential to result in conditions not being accurately diagnosed–identifying virtual care as just one potential factor leading to delayed or missed diagnosis. One participant described being sent home after presenting to physician’s office feeling unwell, being told “no, no, you’re good to go home, everything’s fine” (Participant #25), only to be admitted to the hospital a few days later with “blood clots” (Participant #25).

Treatment and disease: Response and cure vs. progression and relapse. The simplest expression of a good fit between biomedical treatment and disease was observed to be when symptoms, and their impact on the patient’s function, were ameliorated. However, many patients were asymptomatic from cancer, and good fit was evident only on imaging with response or resolution of radiological evidence of cancer, or by the lack of signs of recurrence. Even in instances where cure had likely occurred, and the malignancy was no longer present, patients experienced a lasting impact on their lives.

For those who had completed treatment with curative intent, evaluating whether good fit between treatment and disease had occurred is complicated as the chance of reoccurrence remains a possibility. Re-occurring evaluations conducted by healthcare providers as part of a surveillance strategy, including history and physical examinations, bloodwork, and imaging at regular intervals, were described by patients and their informal caregivers. These evaluations resulted in a cyclical pattern of growing anxiety as these assessments approached, a sense of relief following an uneventful checkup, and then the return of anxiety as the next evaluation approached. Additionally, some described a lasting sense of unease unrelated to the surveillance cycle:

I don’t know, I get strange pains and stuff and you start getting worried—is it coming back? (Participant #34)

Patients receiving cancer treatments intended to control, not cure the malignancy, described the experience of being in a holding pattern, planning their lives around the next assessments of the disease and subsequent instructions from their oncologists:

… he put me on a three-month break. They did another CT scan and extended that break another four months. […] Well, when I first started the treatment it was to be six to nine months. […] After I did my nine months they extended it another few months. And then after they extend again they said, "Oh, we want you to go for a full year,"… (Participant #23)

For patients experiencing disease progression while on treatment, the impact of poor fit between treatment and disease affected both them and their support networks far beyond the experience of awaiting imaging results:

So, first round of chemo didn’t work, now the stem cell transplant hasn’t been successful. At which point, they decide to do the radiation, and they are convinced that, you know, we’ve got this sucker, and we’ve got everybody on board with us. And low and behold, it hasn’t worked. […] The [doctors are] saying, “Oh, we’re starting to run out of options, this thing is spreading by the minute practically,” and do you know how terrifying that must be for [the patient] who’s thinking, there’s something in here growing and trying to kill me? […] Everybody, you know, when you get a diagnosis like this, there are many things that happen. Your support team, people that love you, they’re so overwhelmed, they’re so–everybody was so rooting for us and was so sure. And somehow, they don’t know what to say, so they don’t say anything. (Participant #33)

It did not emerge from the data that fit between anti-cancer treatment and disease was significantly impacted by the pandemic. Some participants did describe that their elective procedures—such as breast reconstruction post curative surgery—had been delayed. Aside from one patient who believed they experienced a recurrence related to a delay in the receipt of curative radiation treatment due to the pandemic and experienced a relapse of their malignancy (Participant #04), no patients described that their anti-cancer treatment had been altered due to the pandemic in a way that resulted in a worse outcome. One participant who received care both before and during the pandemic stated:

It hasn’t been much different, the type of care that I’m receiving. I go for chemo every second week, so that really hasn’t changed. (Participant #03)

Non-physical characteristics and human assets: Respect, trust, and connection.

Good fit between the human characteristics of the patient and the human assets of those providing healthcare results in an experience, where, at a minimum, the verbal and non-verbal interactions the patient has with healthcare staff does not negatively impact the experience of receiving healthcare. Healthcare providers that took care to offer extra physical comforts such as simply asking “do you want a blanket?” (Participant #21) for patients waiting for a treatment, paying attention to minor medical issues (Participant #14), or having a physician take the time to answer questions in a relaxed and patient manner, were just a few of the many interactions contributing to good fit.

Being treated with disrespect, dealing with healthcare providers who appeared disorganized, and experiencing deviations from how they expected to be treated had the potential for a lasting negative impact on fit. Negative emotional reactions, such as anxiety, to both individual healthcare providers and in the healthcare system in general where described by participants when these types of events occurred. One participant described a healthcare provider as “a scatterbrain … [who] always seems rushed” (Participant #21). The participant (#21) and their informal caregiver (#21) provided an example of an appointment with the healthcare provider where the objective was to review CT imaging and the doctor did not know the purpose for the meeting. They described themselves as revisiting the negative experiences with this physician in their minds and worrying about their next visit with the them as they went about their lives. This participant contrasted these experiences with those they had with another physician who was part of their multi-disciplinary care. They described the physician as “… unbelievably nice. [They] get a gold a star” (Participant #21). The physicians worked in different buildings, and the participants described increased anxiety entering the building where the physician they described as a “scatterbrain” worked, compared to the one they described as “unbelievably nice”.

The increased use of virtual care was identified to impact both the interactions and relationship between patients and healthcare providers in significant ways. In contrast to improving fit in terms of access to healthcare providers, as previously discussed, the fit between the human characteristics of the patient and the human assets of the biomedical system emerged as negatively impacted. Participants shared that seeing the healthcare provider’s face and observing body language was an essential part building trust and provided information about whether the healthcare provider was being honest and forthcoming:

… when I would attend the appointments with [them], I found that you’re face-to-face with the physician. You’re face-to-face with the nurse. You have a better understanding. You’re able to ask questions. You can see the sincerity because when you’re a people person, you can read people, you know. If they’re telling you that things are going well or not well, you can tell. (Participant #36)

This was particularly important at the beginning of the patient-clinician relationship. As one participant described, once trust in the healthcare provider was established, virtual care had less of an impact on trust:

Yeah. I think the first meeting is probably a good idea to do if you can, to do in person [or] do Telehealth so there’s a video, so you can see what somebody looks like. Because when you have that connection, you feel like you have a personal connection. But then after that I’m personally fine with the phone too. (Participant #02)

Participants also described that the duration between seeing their oncologist in person impacted fit, by decreasing the confidence that everything was going well and that they were being taken care of. This was illustrated by one patient on surveillance following completing treatment who, at the time of the interview in July 2021, had not been seen in person by a physician since the beginning of the pandemic:

The visits have all been virtual since then, like my checkups. So other than bloodwork, like, I haven’t had any, like, scans or anything. […] But like I said, I–I haven’t had an examination and I don’t really know what I’m feeling for, like, [the oncology physician] asked if there’s any lumps and stuff. I mean, I try but I don’t know because I didn’t find anything the first time either. So. It kind of makes me uncomfortable that way that I haven’t had an examination at all since [the pandemic] started. (Participant #34)

In terms of information sharing, participants described telephone communication as being impersonal and one-sided. In general, this was identified as a good fit for appointments with physicians where one-directional delivery of information by the physician—and a poor fit in situations when information sharing through conversational back and forth was important:

Well because you don’t need an examination if somebody’s just going over you know what your blood levels are your blood sugar or that, maybe something that they’re seeing on an x-ray you don’t have to be examined. So that to me can be done over the phone. […] I think [telephone visits are] a better use of everybody’s time but you have to get that comfort level established. (Participant #03)

The use of telephone communication had other impacts on fit between healthcare providers and patients. Many participants perceived more background distractions on the physician’s side during telephone interactions:

It’s like I’m talking to somebody, like, a telemarketer. I can hear all sorts of people in the background. My doctor’s talking to, I don’t know if it’s [their] nurse or […] clerk […] it’s completely disconnected. (Participant #39)

For conversations involving sensitive and complex information, such as discussing new treatment plans, reviewing imaging, or palliative care counselling, in-person visits were generally identified as a better fit than virtual visits for many participants:

And like I said, the hard part was all this news I got was always by telephone. It was never face-to-face with a doctor so you could ask questions. I mean you’re just in shock, right? (Participant #23)

However, this was not always the case as the non-physical characteristics of the patient were observed to impact the fit of receiving sensitive information over the phone. One participant described how their professional background made receiving the cancer diagnosis over the phone a good fit:

You know what, I’m okay with over the phone, because of COVID. You know, if that makes things more expedient, like, faster, I’m okay with the phone. But again, I’ve got the medical background, I understand more than maybe a lay person. […] I appreciated getting the phone call earlier than I thought I would, and then it’s, like, okay, so this is what it is, now the next step is the treatment and to deal with it. (Participant #37)

Additionally, for some patients being able to be supported by loved ones in their own homes, resulted in a better experience receiving difficult news than through in-person, face-to-face conversation with physicians. The following two contrasting quotes illustrate this:

Like I had a really–anxiety attack, and I thought I’m going to be sick, and [the physician] just–[they] left the room, and [the physician] got some assistant to come in like a while later. […] Like [the physician] came in the room and my [spouse] had gone to the washroom, I said, “Can you wait till my [spouse] comes back?” [the physician] said, “No, […] we found something under your armpit.” Like [the physician] didn’t even wait until my [spouse] came back in the room to tell me. (Participant #21)

… it was about getting [genetic] results back. […] So that was on the phone as well. […] And so I said to the [geneticist], “I have you on speaker phone” and my [sibling] was [there] and my [spouse] was [there] and that’s who I wanted to be there. And so, either way there was a lot of tension […] I ended up crying anyway. […] Even if it was bad news, [the geneticist] wouldn’t have been able to do anything about it. (Participant #02)

While social distancing and the introduction of virtual care impacted fit between patients’ non-physical characteristics and the human assets of the healthcare system, there were aspects of that relationship that were essentially unchanged. Human connections with healthcare providers were still possible and were described to occur in ways consistent with the pre-pandemic experience. The interaction that one participant described with the nurses in the chemotherapy treatment area is one example:

Like, on my birthday, they made me a bouquet of–they just grabbed some gloves and some leaves from their plants, and I ended up having chemo on my birthday. So they gave me a gift card. That was super-nice of them, caring. […] The treatment room hasn’t changed, besides them wearing masks, you know what I mean? (Participant #39)

Non-physical characteristics and biomedical assets.

The fit between the non-physical characteristics of patients and the biomedical assets provided through the healthcare system was also identified as impacting the cancer experience. The two sub-types emerged including: 1) between human characteristics and treatments/procedures, and 2) between human characteristics and healthcare facilities. The expectations of the patient and informal caregiver played a major role in mediating experience in both categories.

Treatments and procedures: The experience of receiving on biomedical treatment. The experience of receiving treatments and procedures was observed to primarily be mediated by the expectations of the participants. Expectations were observed to be informed by a number of different sources including healthcare providers, public media sources such as T.V., the internet, information from friends and family, and previous personal experiences. Expectations impacted the experience of receiving treatment in two main ways. When participants expected a treatment or procedure to go poorly, they often described a negative experience leading up to the procedure. For instance, one patient described her ongoing anxiety associated with appointments for port-access and care:

… I got a port put in, but still they had trouble accessing it, and sometimes they’d have to [try] four or five times because it turns out it was twisted in there, so I just [suffer] like really, really bad anxiety. (Participant #21)

Additionally, when a treatment/procedure was different than expected or the information provided by healthcare providers did not adequately prepare the patient for what was going to happen, participants described a negative experience:

… and I said, "No, I’ve had enough." I was going for weekly treatments. So–and I was pretty sick all of–the full first year I was on there. Like I–of course–you know what you expect to lose your hair and your nails, and I didn’t expect, like, atrophy in my hands and feet [or] nasal ulcers, [and] body spasms which were really bad. (Participant #23)

In contrast, for some, the experience of treatment is better than expected. One participant shared that the expectations they had developed regarding their own treatment were in part developed from their experience with a family member who had passed away from cancer, and that comparatively, the experience of receiving treatment was a good one:

Oh, I thought I was going to be on the drip all the time and the only drip I get is the calcium once a month. The rest is just the needle in the belly. To me I’m getting away scot-free. (Participant #20)

The impact of the COVID-19 pandemic on the patient experience of receiving treatments and procedures did not emerge as significant. This appeared to be in large part related to the fact that the actual delivery of medical treatments and procedures was relatively unchanged, and a large amount of the support that patients received through one-on-one nursing was still available–both over the phone and in-person during visits to treatment and clinical areas.

Healthcare facilities: Fit between non-physical characteristics and hospitals and clinics. The physical characteristics of healthcare facilities, including their general condition, emerged as not in and of themselves a major determining factor of fit. The fit between the physical characteristics of the facility and the patient was, in part, related to the other facilities that participants had attended:

But once we saw [Hospital #2], then [Hospital #3], we realized that [Hospital #1] maybe was not quite as great as we thought. […] It was just, you know, it was–to just be blunt, it was a dump. (Participant #32)

However, when describing the care at the facility described as a “dump” the participant highlighted the central role of healthcare providers in creating a positive experience, a factor that outweighed the general condition of the facility:

The nurses and the doctors were very good … the people were great and the attention was great, so. (Participant #32)

Other participants described volunteers and healthcare staff being friendly, and helping them navigate new facilities that had signage that was confusing. It was a consistent finding that positive experiences with healthcare providers were able to overcome perceived physical shortcomings of the facilities themselves. However, instances were not identified where the physical attributes of a facility overcame interactions with healthcare providers described as negative.

While the healthcare facilities did not physically change as a result of the pandemic, an element of uncertainty was added to the task of accessing biomedical facilities in person. For instance, participants described dealing with the sudden presence of long COVID-19 screening lines at healthcare facilities, and being surprised when guidelines that normally restricted informal caregivers accompanying patients in healthcare facilities, were altered:

… the day I checked in, they changed the rules that allowed one visitor. And the expectation was going to be, I’m in there for twenty-one days, no visitors, period. That would have been very, very nasty for my [spouse] and for myself. […] And that probably made a huge difference in terms of morale and attitude and stuff for both of us. (Participant #29)

One important finding was how the pandemic impacted the experience of waiting to access biomedical assets–either prior to appointments with clinicians or in treatment areas. Participants described areas where waiting occurred as important places for gathering information and obtaining support from nurses, clerks, and other patients and informal caregivers. Despite social distancing measures, patients described still having meaningful communications with healthcare providers and other patients in waiting areas.

Lastly, the experience of entering biomedical facilities, and receiving services without informal caregivers present was identified for many as a significant challenge. This was especially evident at the beginning of the cancer journey, when facing a novel challenge such as a new treatment, or when meeting a new care team:

… it takes a lot of just fortitude just to stand up and walk through the doors, not having someone beside you. (Participant #02)

Informal caregivers and fit.

Importantly, across all typologies, informal caregivers emerged as having the potential to improve fit. They were observed to provide both emotional and physical support–enhancing the care that the patient received through the healthcare system. One informal caregiver described the vital role they played in improving fit between the patient and the healthcare system:

… I was working as a middleman between the doctors and nurses, trying to keep abreast of what the results were, what this meant, you know, how were we going to go forward, what problems [patient] was facing. (Participant #26)

Each informal caregiver was identified to possess have a unique combination of assets available to contribute to the care of the patient. A particularly clear example came from one participant who described what each of their three adult children contributed to their care. They identified that one of their three children was a nurse, another was a physiotherapist, and another had a great natural sense of humor (Participant #35). The skills of the nurse were identified as particularly helpful in the immediate post-operative period from cancer surgery and in helping the patient get through chemotherapy. The physiotherapist assisted with rehab and recovery from surgery. The child with the great sense of humor provided emotional support through the cancer journey and helped to lighten the mood.

It emerged from the data that informal caregivers not only improve fit between healthcare assets and the patient, but they also support the patient in the aspects of their lives outside of the patient experience domain. Common examples included helping out with housework or child care. One informal caregiver described the support they provide in addition to assisting with medical care:

… and then through [their] personal life, we support [the patient], [who has] got two small kids. […] sometimes after treatment, you know, if [they’re] experiencing some fatigue, things like that, I like to open up my home and say–because [the patient] wants to spend time with [their] children, [and] just doesn’t want people picking up [their] children to look after them. [They] still want to be there even if [they] need to rest a little bit. So just welcoming [the patient] in our home and having [their] kids play with my kids and just giving her that environment where [the patient] can still really enjoy that, but sort of relax a little bit while, you know, I can make a meal or run after the kids a little bit, things like that. (Participant #36)

Providing support to patients during the cancer journey emerged as requiring the investment of time and energy on the part of informal caregivers–this cost was identified to be proportional in many ways to the fit between healthcare assets and the patient. One informal caregiver described the extent of the emotional support they provided to their partner and how it impacted their ability to contribute to their workplace:

Well cancer changed [patient’s] life; I’ll put it that way. [They were] not an anxious person; [they] didn’t have anxiety at all before cancer. So most of my days are spent making sure [they’re] OK. […] Well I’m lucky–I do have a lot of sick days. (Participant #22)

The impact of the pandemic on informal caregivers’ ability to support patients in accessing services was evident in situations where they were not able to provide in-person support–such as in facilities where strict social distancing measures were in place. This resulted in informal caregivers being unable to support the patient in accessing biomedical assets beyond transporting them to healthcare facilities:

Well obviously I’m worried about [the patient] but I never ever–I made sure that I didn’t add to [their] anxiety before. Everything was positive, like I was as positive as possible till the second [they] walked out the door of the car. (Participant #22)

Additionally, for informal caregivers who did not live in the same household as the patient they were supporting, there were limitations to the support they could provide. For instance, some informal caregivers described not being able to provide help with things like childcare and meal preparation, things they would normally do for the patient on days they were unwell from treatment, due to social distancing restrictions.

However, it was identified that the increased use of virtual care through telephone and video-conferencing improved fit for some informal caregivers. Informal caregivers identified that the convenience of the phone calls was beneficial as there wasn’t a need to provide transportation, which for some required missing work. It was also noted that virtual care supported more informal caregivers being involved in patient visits with physicians, as multiple friends and family members could be connected through conference calls with healthcare providers.

Lastly, disruption to the regular in-person care routine was identified as a cause for concern among many informal caregivers:

And so, when we were told, no, we can’t see [the doctor], that kind of breaks up that, you know, superstition I guess you’d call it. You know? You feel like, well, Jesus, they’re not going to see us and then […] and that brings a lot of worry and tension. (Participant #26)

The pandemic and coordination of care.

Based on the complexity of providing multi-disciplinary oncology care and the number and rapidity of changes to healthcare delivery occurring in a rapid fashion at the start of the pandemic [3], it was hypothesized that this study would identify issues with how care was coordinated related to the pandemic. Evidence to support this hypothesis did not emerge during this study. By comparing and contrasting the experiences of participants from before and during the pandemic there was little evidence of a meaningful difference in the perception of how care was coordinated. Appointments, tests, and procedures happened as planned and participants did not describe any issues specific to the pandemic in this regard.

However, it is possible that the issues with coordination of care resulting from the pandemic were simply missed and there are two possible reasons for this. First, the semi-structured interviews for this study began in October of 2020 and continued until June of 2021, with most service delivery changes being implemented earlier in the year—closer to the month of March [1, 3, 4]. This timeline resulted in many months passing since the initial, and likely most dramatic, COVID-19 related changes to cancer care, and any data collected in relation to this period may have been affected by recall bias. Ideally, data collection for this study should have begun closer to the March of 2020, but this was not possible as time was needed to secure funding, gain ethics and institutional approvals, and recruit participants. These challenges highlight the importance of serially collecting patient-reported outcome and experience measures on an ongoing basis that reflect the important domains of the patient experience. This would have facilitated a real-time understanding of the impact of the pandemic on the patient experience. Furthermore, this could have facilitated streamlined recruiting for in-depth exploration instead of through the survey that participants used for this study.

The other reason why issues with the experience of care coordination could have been missed is due to how the participant interviews were conducted and the coding structure that emerged. The interviews were structured around questions designed to result in the participants sharing what was important to them regarding their experience. It is possible that a detailed and focused exploration specific to care coordination may have yielded important insights and evidence in support of a significant impact from the pandemic. This, however, would have been at the expense of exploring the issues that emerged as important to the participants (i.e., what was “really going on”). Given our approach, it is reasonable to conclude that any issues with care coordination were either transient or simply overshadowed by the other issues that emerged from the collected data—such as those related to virtual care and the decreased access to informal caregivers in in-person clinical interactions.

The pandemic, information provision, and optimizing virtual care.

The findings of this study build on what is already known about the provision of oncology care through virtual medicine [7, 36]. Previous work published both before and during the COVID-19 pandemic has identified that virtual care is both safe, and may be preferred by patients in specific circumstances, such as when included as part of surveillance after curative treatment [37–39]. A recent survey study of 108 sarcoma patients during the pandemic in the UK [40], identified higher satisfaction with virtual visits (8.99/10) than with in-person visits (8.35/10). Reduced travel time and expense, and increased convenience were reasons identified for preferring telemedicine care [40]. Through the lens of fit theory, these findings make sense, as they reflect that patients value care that comes with less of an impact on the aspects of their lives occurring in the non-patient domain. The challenge moving forward is to develop strategies to ensure virtual care is conducted in a way that supports both appropriate biomedical care as well as the unique non-biomedical care needs of the individual patient.

Importantly, 48% of respondents in the above-mentioned survey identified that they would not want to hear bad news over the phone, with no differences in preferences identified between age, sex, or education level [40]. Fit theory adds additional insight to this finding as it helps to characterize the important role of personal coping characteristics and informal caregivers in supporting a patient when receiving difficult news. Fit theory suggests that it is likely that some patients would prefer to receive bad news through virtual care so that they could be have the conversation in a physical environment that they are comfortable, such as their own home, with their informal caregivers present, either physically or virtually.

Clinical implications.

Consistent with previous work, this study identified that informal caregivers add to the care of patients in many ways [41–43], including through assisting with information gathering from doctors and nurses [28]. While it did not emerge directly from the data analysis, Fit theory suggests that it is possible that coordination of care may have been impacted as informal caregivers were not able to attend appointments. Clinicians are encouraged to identify ways to ensure that important information about what to expect from care, including what aspects of care the patient and their informal caregivers are directly responsible for, are communicated to informal caregivers, even if they are not able to attend appointments. For in-person visits, clinicians may consider assisting the patient with recording the visit on their smartphone or other device if a formal consultation recording service is not available so the discussion can be reviewed later with the informal caregivers. This recommendation is supported by previously existing evidence that consultation recording has been demonstrated to positively impact psychological health, well-being, and knowledge transfer [44]. For telephone or virtual visits, including informal caregivers through speakerphone, conference calling, or providing them with link to join video calls are all simple and practical strategies to help patients benefit from the added support of their informal caregivers.

In terms of the provision of virtual care, clinicians need to be aware of the important elements of clinical care that, while present with in-person care, may be at risk with virtual care [7, 9, 36, 40]. In some cases, participants described hearing background noise and experiencing uncertainty regarding whether clinicians were focusing specifically on them. This suggests that like in-person visits conducted in private exam rooms, clinicians should be supported in having appropriate facilities where they can focus on engaging with patients virtually without distractions. Ensuring healthcare providers are provided with dedicated quiet space to conduct virtual care, such as a clinical exam rooms that are adequately equipped to conduct virtual care without risk of interruptions or distractions, will likely improve fit. Additionally, clinicians need to have a low threshold for converting virtual care to in-person visits. Patients at risk of deterioration without seeking medical attention, including the frail elderly, and those without a robust informal caregiver support network, should be assumed to be a poor fit for virtual care alone until proven otherwise.

Based on the experiences shared by participants in this study, developing strategies to inform those receiving virtual care about strategies to optimize clinician visits is important. Coaching patients and informal caregivers to prepare a list of questions to ask clinicians before virtual visits and taking time to develop familiarity with speakerphone and conference call features will likely lead to improved fit. Clinical recommendations regarding virtual care are summarized in Table 5.

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Table 5. Clinical recommendations^* for virtual care.

https://doi.org/10.1371/journal.pone.0269285.t005

Future directions.

Developing educational strategies for patients, informal caregivers, and clinicians around the use of virtual care in oncology, with the aim of improving fit, is an important future direction. Patients and their informal caregivers need to be aware of what to expect in virtual visits, including their limitations, and when to insist on being seen in-person. Given the impact of virtual care on fit, both in terms of biomedical and psychosocial outcomes, this is an area worth exploring through systematic research. Based on the widespread uptake of virtual care during the pandemic in the cancer context, this work would be of utility around the globe.

Additionally, evidence-based strategies are needed to guide clinical decision making regarding when a patient needs to be assessed in-person or when a telephone visit is appropriate. Based on fit theory, such a strategy would include consideration for both healthcare system assets and patient characteristics. For instance, patient preference and geographic location are important from a patient centered perspective in terms of determining whether to provide care virtually. However, time since last in-person clinician visit, the presence or absence of new or evolving symptoms, indication for the visit that is currently being planned (i.e., where the patient is in their care pathway), and characteristics of informal caregivers/support system (i.e., number of people involved, their physical/cognitive ability, and the types of relationships) are important patient characteristics in terms of assessing whether virtual care can be delivered safely. One approach might involve a model involving a hybrid of healthcare provider decisions and patient input. For instance, the healthcare provider role could involve constructing a customized virtual care plan for each patient including whether the patients are eligible for virtual care, including the types of formats they are eligible for (i.e., telephone vs video-conferencing), how often they should be seen in-person, the types of visits where they require in-person assessments, and instructions for under what circumstances the virtual care plan should be revised (including how often it should be reviewed). From the patient perspective, deployment of questionnaires to patients in the days and weeks prior to their appointments using secure electronic methods via smart phone apps or email surveys, facilitating capture of new symptoms, concerns, and, only for eligible patients when appropriate based on their virtual care plan, if they are interested in being assed virtually and what format they would prefer. Important metrics to consider as part of the evaluation and refinement processes, based on fit theory, would include the cost of care delivery, as well as the financial impact on the patient, the amount of time involved in receiving care, satisfaction with care, symptoms, and emotional distress. Fit theory is useful for providing an evidence-based theory as a starting point for constructing a strategy for triaging which patients are appropriate for virtual care and for measuring its effectiveness. However, developing and testing such a strategy will require input from all stakeholders, including patients and their informal caregivers [24] and careful evaluation using an approach suitable for complex interventions [17] and likely involve the use of quantitative and qualitative methods through all phases of development and deployment [46].

Limitations.

Recruitment for this study was limited to those receiving cancer care in Manitoba, Canada, and not focused on identifying participants with specific cultural backgrounds. Therefore, fit theory should be applied with some caution in other regions and in specific cultural groups. Extending and adapting the theory in other parts of the world and in specific cultural groups is likely a valuable direction for future work. Additionally, recruitment was focused on those receiving IV treatments such as chemotherapy, as well as radiotherapy. While many of these patients received surgery, it is not clear how the cancer experience in instances were only surgery was indicated was impacted by the pandemic.

Lastly, it should be noted that this study was not an evaluation of the quality of the healthcare system or the quality of the cancer experience in Manitoba, Canada before or during the COVID-19 pandemic. Many of the quotes in the results section describe participants having a negative experience with some aspect of their cancer experience, but conclusions about the overall quality of care cannot be drawn from these. The examples were chosen to demonstrate the concepts of the theory, as such those that were the most dramatic, because they were the most illustrative. Standardized approaches, such as using validated patients reported experience measures, including the Ambulatory Oncology Patient Satisfaction Survey, are likely better suited for the purpose of evaluating care [40, 47].