Anxieties of cancer patients and caregivers about phone and virtual appointments during the pandemic

Before COVID-19, seeing a doctor or specialist generally meant seeing them in person. Now, it typically means talking to them on the phone, or perhaps over a video call. Although most cancer patients and caregivers are okay with alternative means of contact, some have found them inadequate, according to a survey recently conducted for the Canadian Cancer Survivor Network by Leger. Some are concerned about the lack of physical examinations, while others find phone or video interactions to be a less reassuring or less effective way of communicating.

The survey was conducted by Leger on behalf of the CCSN between May 22 and June 10. It asked cancer patients, caregivers of patients, and patients in the pre-diagnostic stage about how the disruption of cancer care due to COVID-19 has affected them, and about their fears and concerns related to their cancer care during the pandemic.

Although video calling has soared in popularity in general during the pandemic, phone calling seems to remain more important for cancer care. Most survey respondents who interacted with a health care provider during the COVID-19 pandemic did so over the phone. A smaller percentage saw a health care provider in person – between 30 and 40 percent, depending on the kind of physician. Fewer still had appointments over video call or communicated by email, instant messaging, or text message.

Phone calling has the advantage of simplicity, reliability, and familiarity, especially for older people who may not be comfortable with the software or may not even have a device capable of video calls. (The survey participants tended to skew older – 53 percent were aged 65 years or older, and 23 percent were between 55 and 64 years old.)

For the most part, patients and caregivers seem to be comfortable with switching from in-person to telephone. Almost all survey respondents who talked on the phone with a health care provider said they were satisfied with the interaction. Among cancer patients, only slightly fewer were happy talking on the phone with their physician than meeting them in person. Fewer caregivers than patients, although still the majority, were happy with their phone appointments and conversations.

Some patients, though, find themselves ill at ease communicating over phone or video. Carol, a stage 4 patient in Ontario with multiple cancers, says: “I find phone conversations difficult, video call better but not optimal. Very much miss in person appointments, body language, reading between the lines so important.”

Another patient, with stage 1 thyroid cancer, finds that telephone conversations, although safer, “are not very effective for communicating symptoms and examining changes to health.” Fewer patients have been in contact with their health care providers primarily by email. “I really miss the personal contacts with my oncologist,” wrote a British Columbia lymphoma patient. “Things come up in a conversation which are helpful and calming. I have not seen him in four to five months and just communicate by email.  I feel a bit ‘in the dark’.”

Other patients point out that there is sometimes no substitute for having a doctor look at your body with their own eyes. Some are anxious that things that would have been caught by a physical examination have been missed in phone or virtual appointments – signs that an active cancer is getting worse, or that a cancer in remission is starting to recur.

Hilde, a Ontario anal patient in remission, experienced these anxieties: “I had a virtual appointment with my radiation oncologist. This heightened my anxiety as I was not able to have a physical exam. As the days pass, I experience anxiety close to panic attacks at times thinking I may have a recurrence that has been missed because of the virtual appointment. … Pre-COVID I felt that I had much better care.”

Percentage of survey respondents who were satisfied with non-in-person interactions with health care providers

Percent satisfied
Mode of communication Type of physician Patients Caregivers Pre-diagnostic patients
Telephone GP 90 % 74 % 80 %
Hematologist / Oncologist 93 % 81 % 40 % *
Urologist 92 % 76 % * 100 % *
In Person GP 89 % 81 % 92 %
Hematologist / Oncologist 96 % 100 % 100 %
Urologist 88 % 100 % 63 %
Video GP 70 % 81 % 70 %
Hematologist / Oncologist 85 % 75 % 60 % *
Urologist 57 % 67 % * 83 % *

* Low sample size (less than 30 people)

It is worth noting that, on the whole, far fewer respondents were unhappy with the lack of in-person appointments than were concerned about the risk contracting COVID-19 in a hospital (or of their loved one contracting it, in the case of caregivers). A few caregivers even expressed relief at not having to take the person they care for to the hospital, because phone or virtual appointments were available.

Caregivers who responded to the survey seemed to have a small but significant preference for in-person appointments over phone calls. For some it is because they know the person they care for relies on them for assistance in liaising with medical personnel. A caregiver for a person with stage 3 colon and rectal cancer in Alberta says: “I have been restricted from attending the in-person appointments. This is concerning, due to the patient not being able to either understand or remember information/instructions given during the appointment. When a person is under stress, the less they remember.”

Other caregivers, even if they might prefer in-person appointments, are happy that the one they care for is still in contact with physicians at all, even if by other means, fearing the appointments would have been cancelled entirely.

Like caregivers, more pre-diagnosis patients were satisfied with in-person interactions with their physician than with phone interactions. Significantly more pre-diagnosis patients reported feeling more fearful and anxious, both in general and about their possible cancer, than cancer patients.

In general, the survey shows that how doctors interact with patients and caregivers has a huge impact on their mental and emotional health and on whether they find they are well cared for. It’s important for health care professionals to be cognizant of these concerns and anxieties as non-traditional ways of conducting appointments and interacting with doctors become more common, both during and after COVID-19.

One thought on “Anxieties of cancer patients and caregivers about phone and virtual appointments during the pandemic

  1. Depending on yourself to make the decisions can really be upsetting and frustrating. Many of us develop this ability over the course of our life. Frankly it takes more than just happening to happen.

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