Thirty-two patients (mean age of 61, 23 female), participated (see Table 1). The majority had breast (n=12) or prostate (n=9) cancer. Fifteen had localised disease and 19 were currently receiving treatment. Sixteen carers (mean age of 57, 15 female) participated, most of whom (n=12) were a spouse/partner.
Table 1: Cohort characteristics
|
Patients (N=32)
|
Carers
(N=16)
|
Health
Professionals
(N=29)
|
Variable
|
N (%) *
|
N (%)
|
N (%)
|
Gender
|
|
|
|
Male
|
9 (28)
|
1 (6)
|
2 (7)
|
Female
|
23 (72)
|
15 (94)
|
27 (93)
|
|
|
|
|
Age in years
|
Mean=61
|
Mean=57
|
Mean=48
|
<40
|
4 (13)
|
2 (13)
|
9 (31)
|
41- 50
|
2 (6)
|
2 (13)
|
6 (21)
|
51- 60
|
6 (19)
|
4 (25)
|
8 (27)
|
61- 70
|
14 (44)
|
7 (44)
|
4 (14)
|
71 - 80
|
6 (19)
|
1 (6)
|
1 (3)
|
|
|
|
|
Born in Australia
|
21 (66)
|
12 (75)
|
25 (86)
|
|
|
|
|
English spoken at home
|
32 (100)
|
14 (88)
|
27 (93)
|
|
|
|
|
Level of Education
|
|
|
|
School
|
5 (16)
|
1 (6)
|
0
|
Technical certificate
|
8 (25)
|
2 (13)
|
1 (3)
|
Undergraduate degree
|
9 (28)
|
4 (25)
|
4 (14)
|
Postgraduate degree
|
10 (31)
|
9 (56)
|
24 (83)
|
|
|
|
|
Employment
|
|
|
|
Employed
|
9 (29)
|
7 (44)
|
28 (96)
|
Retired
|
19 (59)
|
6 (38)
|
0
|
Unable to work
|
2 (6)
|
6
|
0
|
Unemployed
|
2 (6)
|
2 (13)
|
0
|
Student
|
0
|
1 (6)
|
1 (3)
|
|
|
|
|
Time since diagnosis
|
|
|
|
<1 year
|
12 (38)
|
|
|
1-5 years
|
17 (53)
|
|
|
>5 years
|
3 (9)
|
|
|
|
|
|
|
Cancer Type
|
|
|
|
Breast
|
12 (38)
|
|
|
Prostate
|
9 (28)
|
|
|
Lung
|
3 (9)
|
|
|
Other
|
8 (25)
|
|
|
|
|
|
|
Cancer Stage
|
|
|
|
Local
|
15 (47)
|
|
|
Locally advanced
|
5 (16)
|
|
|
Metastatic
|
9 (28)
|
|
|
Other
|
3 (9)
|
|
|
|
|
|
|
Currently on treatment
|
19 (59)
|
|
|
|
|
|
|
Relationship with patient
|
|
|
|
Child
|
|
2 (13)
|
|
Spouse/ partner
|
|
12 (75)
|
|
Parent
|
|
1 (6)
|
|
|
|
|
|
Lives with patient
|
|
13 (81)
|
|
|
|
|
|
Has own medical condition
|
|
7 (44)
|
|
|
|
|
|
Profession
|
|
|
|
Oncologist/palliative care
|
|
|
8 (28)
|
Nurse
|
|
|
10 (34)
|
Psycho-oncology
|
|
|
9 (30)
|
Allied health
|
|
|
2 (7)
|
|
|
|
|
|
|
|
|
Public or private practice
|
|
|
|
Public
|
|
|
18 (62)
|
Private
|
|
|
3 (10)
|
Mixed
|
|
|
7 (24)
|
* Numbers vary due to a small amount of missing data
Twenty-nine HPs (mean age of 48, 27 female) participated. They included 10 nurses, 6 medical oncologists, 9 psycho-oncology staff, 1 palliative care physician, and 2 allied health practitioners (a physiotherapist and genetic counsellor).
Qualitative analysis yielded four themes related to the impact of COVID-19-related oncology service changes: safety, increased stress and burnout, communication challenges, and quality of cancer care. Below these themes are explored, with characteristic quotes identified by source (patient (P), carer (C), or health professional (HP)) and participant ID. Additional quotes are presented in Supplementary Table 1.
1. Safety
Patients and carers observed many altered procedures in hospitals to reduce risk of COVID-19 infection, including temperature checks, screening questions, masks, personal protection equipment (PPE), extra cleaning, and hand sanitizer. Participants felt comforted and reassured by these precautions.
"... The doctor said you're in a safe area. Try and hold onto that." (P321)
Only one patient felt hospital procedures were not sufficiently rigorous to ensure safety:
“We didn't have temperatures taken or anything… I thought a little bit casual.” (P340)
Despite infection control procedures, HPs worried that patients/carers were prioritising COVID-19 safety over seeking diagnostic and treatment services, with downstream consequences of poorer outcomes.
“It worries me there’s all these patients [with] cancers getting upstaged while they sit at home… are we going to see a flood of advanced malignancy in six months’ time?… there’s been a couple of patients who have come in with the worst cancer I’ve ever seen.” (HP148)
2. Increased stress and burnout
Exclusion of carers from hospitals left many patients feeling stressed and isolated. Social distancing reduced opportunities to share experiences with other cancer patients; telehealth reduced human contact. Carers were also impacted, as noted by patients and HPs.
“Their [carers’] anxiety levels are often much higher than the person who has cancer… because they don't have the care team …, interacting with them all the time, they're somewhat left out of it.” (HP127)
Many HPs commented they were grappling with bigger workloads and longer working hours, as they processed ever-changing COVID-19-related information, established new guidelines and procedures to minimise risk, and communicated these to patients and carers. Different consent and scheduling procedures for remote consultations added layers of administration. Several HPs mentioned online work required intense listening to pick up cues, was more fatiguing and provided less job satisfaction.
“I found I couldn't do any more than three back-to-back [telehealth] sessions because I was just exhausted.” (HP105)
“… we've seen a lot of that shifting to email. But… it takes a lot longer to answer an email than it does to have a conversation with someone… And so most clinicians [are] staying back till 6.30 at night, which means their own families are suffering and their own work-life balance and wellbeing starts to suffer.” (HP102)
HPs discussed the strains of being short-staffed when staff stayed away from work due to symptoms or while awaiting COVID-19 test results, or when redeployed to other tasks.
“So suddenly there's five team members out of our ward…and we are under stress.” (HP146)
3. Communication challenges
3.1 Information
Many patients felt they had received general, rather than personalised information from HPs about their COVID-19 risk, such as text messages and signage about hospital changes, which were helpful but did not assuage their personal fears. They wanted individualised information regarding the interaction between their cancer and COVID-19. In contrast, some patients appreciated care and advice received from HPs.
“What would have been helpful is probably the stuff that they don’t know... a known level of elevated risk or not.” (C402)
Many HPs noted the rapidly evolving and conflicting messaging for HPs. Several desired more guidance about issues such as medico/legal and ethical considerations associated with treatment decision-making, and telehealth, including scheduling, what was appropriate for new versus established patients and how billing worked in this context. Others sought information about what and how to communicate to patients regarding how cancer and COVID-19 interact, as well as how to explain hospital policies and rules to limit infection.
“…at the time we were all fumbling… there was a lot of information gaps, but [no] information to fill these gaps” (HP104)
And the ethical and medico-legal aspects of it… Should I dose reduce chemotherapy because they're at greater risk?” (HP106)
All participants wanted simple, clear, consistent messaging that was not confusing, preferably from a single, reputable, government source such as Cancer Australia or the State government’s Department of Health.
3.2 Communication quality
Most patients praised their HPs for behaving professionally despite the stresses of COVID-19, and reported they had good care and responsive HPs. However, some patients and carers discussed experiencing a lack of holistic care and felt doctors were too busy to share information.
“People just want to get her off the phone call or the consultation. And so…she doesn't feel like she can ask questions.” (C408)
Similarly, some HPs felt communication had suffered during the pandemic. Mask-wearing and lack of physical touch were considered “dehumanizing” (HP149).
“And then… they stick masks on us… In delivering really difficult news, suddenly you just get to see my eyes... And…seeing distress on their face, I can't give them a hug.” (HP149)
One HP observed bad news being delivered by someone the patient did not know because of scheduling changes. HPs and carers noted nurses could not attend appointments to provide follow-up information when patients had questions, because of social distancing rules. However, others felt staff were putting in extra effort to support patients in this difficult time.
Many patients, carers and HPs noted telehealth was more impersonal and made it harder to observe non-verbal cues (even with video), ask questions and build rapport, observe physical changes and share and discuss results, requiring good communication skills in all parties and reliable internet. Several HPs commented that telehealth took away “the art of medicine” (HP102). One patient felt information conveyed in telehealth appointments was harder to remember.
“I'm trying to have a serious conversation about my treatment plan… and the internet is cutting out and I can't see the medical professional I'm talking to… that makes what is already a fairly fraught experience even more so… I never felt like I had fully understood everything.” (P328)
Despite this, most patients and HPs agreed telehealth was sufficient given the circumstances, and convenient in terms of reduced travel.
“…I've actually quite liked it [telehealth] because we're able to offer a bit more support to regional patients, patients who can't get into the hospital for other reasons.” (HP105)
Several HPs observed that video was better than phone telehealth, although others found video too difficult to set up and manage for many patients. One HP observed patients were more inclined to open up over the phone because they had greater anonymity through that medium (HP104). HPs overcame barriers by dialling in interpreters and asking patients to send them photos of symptoms to supplement the phone call.
4. Quality of care
Most patients perceived they had not experienced cancer treatment changes due to COVID-19, but some were concerned about future changes, such as elective surgery (e.g. breast reconstruction) being stopped. Some patients were critical of delays to screening, testing and diagnosis as well as some treatments, due to COVID-19. Some were concerned about treatment delays while awaiting COVID-19 test results (this was also noted by HPs) and felt communication about such delays was poor. Another patient described delays in contact from care coordinators. However, some carers noted they had been reassured by the oncologist saying any delays were largely immaterial and would not impact outcomes.
“He used to have immunotherapy before the operation every two weeks. And after the operation, the oncologist… said a lot of people are changing it to monthly because of Covid-19... But he said, either way, there's no real harm.” (C407)
Most HPs did report some changes to treatment schedules and some expressed concern about negative impacts.
“We’ve adjusted some of the treatments we've given, or the follow up… we've backed off on some of the more intensive regimens... in some cases you might be worried whether patients are going to have a more detrimental outcome.” (HP148)
Most changes aimed to reduce infection vulnerability. For example, thresholds for delaying or avoiding chemotherapy were reconsidered, based on factors such as patient age and when benefits of treatment were less clear. Several HPs noted changes to treatment type such as offering oral versus systemic chemotherapy which patients could have at home, or changes to the patient’s treatment schedule to reduce hospital attendances. Some noted minor investigations were stopped completely, particularly lung function tests due to concern about spread from saliva and breath (HP100). However, HPs largely felt nothing drastic was changed and that patients were not being denied treatment or given a lower priority due to COVID-19, despite this being a concern for HPs and something they prepared for. Some HPs noted that rates of unnecessary treatment had probably reduced, as it was easier to reach such decisions on the basis of COVID-19.
“And I think before COVID – sometimes we do give chemotherapy that maybe we shouldn't, and I've been doing much less of that. And that's probably a good thing” (HP148)
HPs took a shared decision making approach with patients, while trying to realistically present the pros and cons of alternative approaches.
“… we always try and present the options to them….but given the complexities associated with COVID-19, we [are more likely to say we] think the risks of giving you the combination are too high, or that the risks outweigh the benefits.” (HP126)
Regarding general quality of care, some patients appreciated reduced wait times for appointments which accompanied changes implemented to reduce the number of people in clinic.
“it actually went a lot smoother than previous ones because there didn’t seem to be any wait times in the consulting rooms.” (P304)
Negative perceptions of hospital-level changes most commonly related to not being able to have a support person attending appointments, which meant patients lost the benefit of having someone else there to ask questions, take in information and receive instruction in home care. One patient discussed her disappointment that all the peripheral integrative services in hospital had been shut down, reducing the quality of her hospital experience. Another described an upsetting move to a different hospital when her original hospital became a COVID-19-designated centre.
Some HPs were also concerned that the quality of general care had reduced, due to stress, time pressures, stretched resources and lack of face-to-face contact.
“A lot of other medical staff, and nursing… I think they've lost a lot of their compassion towards our patients.” (HP142)
Patients and HPs were also concerned cancer patients would be a low priority for COVID-19 treatment should they contract it. Some HPs were also worried about being unable to provide optimal care.
“…one patient arrested, and they couldn't do anything for them while they were dying … because CPR was not allowed in that ward and neither was going close and giving oxygen [until PPE was worn]…” (HP508)
“That was difficult, because… the nurses are all at work, but the doctors weren’t. We did have quite a few patients fall through the cracks and a few toxicities and a few issues around that.” (HP142)