The experience of cancer patients during the COVID-19 pandemic

Abstract

Background

The COVID-19 pandemic has affected the care of many cancer patients in a variety of ways. This study was conducted to understand the experience cancer patients have had during the pandemic.

Method

Cancer patients who were under the care of the Trust between September 2020 – January 2021 were invited to take part in a survey sent through as a text message.

Results

A total of 600 patients were sent a text message with a link to an online survey. There were 82 patients who responded. The data has been divided into three themes of information provision and safety around COVID-19, impact on cancer care and feeling supported by staff.

Conclusion

It was encouraging to see that patients felt safe coming into the hospitals if it was required and they received appropriate information about changes to their care and how to protect themselves against COVID-19. Most patients stated that the pandemic had not influenced their cancer care. Of those that did experience delays most were understanding of this. There was a mixture of responses in terms of patients feeling supported by staff, most inpatients did feel supported and 75% of patients were able to contact their specialist nurse.

Introduction

The Covid-19 pandemic has had a significant effect on healthcare across the world.^1,2 Cancer patients require ongoing care despite stretched resources and services drastically changed to manage the demands of the pandemic. For many cancer patients the familiar hospital setting and regular appointments were disrupted, but where possible these were switched to virtual appointments.^1–6 In some cases treatments may have been delayed and non-essential procedures cancelled.¹ The diagnosis and treatment of cancer already involves anxiety and uncertainty, and this has been heightened during the pandemic.^1,4,7 This extra emotional distress can have negative clinical outcomes.^8,9

The purpose of this study was to understand the experience cancer patients have had in terms of their cancer care during the pandemic. This included how the pandemic has affected their care, how they felt when visiting unfamiliar hospital sites, whether the Trust provided them with enough information about COVID-19 and their care, and if they felt supported by staff.

The study was completed at an NHS Trust in North East London that has four large hospital sites. The population it serves is highly ethnically diverse. According to the 2011 National Census for the North East London boroughs of Newham, Tower Hamlets, Waltham Forest, City and Hackney 44% of the population are White, 30% Asian, 17% Black, 5% mixed and 4% cover other ethnicities.¹⁰

Method

A list of patients was obtained from the electronic patient records, ensuring compliance with the relevant General Data Protection Regulations. This list contained patients who were under the care of the Trust with a cancer diagnosis from September 2020 to January 2021. The list contained mobile numbers of the patients and the hospital site where most of their care was based. The patients were split into their respective hospital sites and the first 150 patients in each of the four lists were selected for a total of 600 patients. As there are four main hospital sites within the trust it was important to have patient respondents from each site.

The survey was designed by the author and sent to healthcare professionals and cancer patient representatives for review. The comments were incorporated and send round once again for approval. This was to ensure that the questions were relevant and easy to understand by a diverse patient population. The survey was then scripted on an online survey platform and sent out again for testing. Further amendments were made, and a tiny URL link was created for survey access. The survey URL link was sent out via text message to the 600 patients on 17^th February 2021. A reminder was sent out on 26^th February 2021 and the survey was closed on 2^nd March 2021.

The data from the survey platform was downloaded onto an excel spreadsheet. The data was analysed using descriptive statistics as a whole and per hospital site and ethnicity where sample size permitted these breakdowns. A final text message was sent out to patients to remind them to contact their clinical nurse specialist (CNS) or medical team should they have any concerns or queries related to their care. As this study was deemed a service evaluation ethics was not required.

Results

There were 82 respondents to the survey giving a response rate of 14%. The demographic data is shown in Table 1. There is an even divide between male and female and these were mainly aged between 55 and 74 years of age. The largest ethnic group is White/White British making up 48% of respondents. The results are separated into three themes: information provision and safety around COVID-19, impact on cancer care and feeling supported by staff.

Table 1.

Patient demographics.

	Number of respondents (%) (Total  =  82)	Number of invited participants (%) (Total  =  600)
Gender:
Female	32 (39%)
Male	35 (43%)
Did not answer	15 (18%)
Age:
Under 18	0 (0%)	0 (0%)
18–34	4 (5%)	46 (8%)
35–54	17 (21%)	180 (30%)
55–74	35 (43%)	263 (43%)
75 +	11 (13%)	111 (19%)
Did not answer	15 (18%)
Ethnicity:
White/White British	39 (48%)	262 (44%)
BAME	26 (31%)	238 (39%)
Asian/Asian British	9 (11%)	123 (20%)
Black/Black British	12 (15%)	86 (14%)
Chinese or other ethnic group	2 (2%)	25 (4%)
	3 (3%)	4 (1%)
Mixed	17 (21%)	100 (17%)
Prefer not to say/not stated
Hospital sites:
Site 1 (large teaching hospital in the City of London)	35 (43%)	150 (25%)
Site 2 (large teaching hospital in east London)	25 (31%)	150 (25%)
Site 3 (acute general hospital in east London)	11 (13%)	150 (25%)
Site 3 (large university hospital in east London)	11 (13%)	150 (25%)

Information provision and safety around COVID-19

Patients were asked if they were made to feel safe when attending the different hospital sites as inpatients or outpatients. All patients responded that they felt safe (90% said they always felt safe and 10% sometimes felt safe).

With regards to provision of information, 78% (n = 64) of patients received sufficient communication about how their outpatient appointments would be affected going forward, while 11% (n = 9) said they did not receive sufficient information. For 11% it was either not applicable (n = 3) or they did not answer the question (n = 6).

Of those who answered the question (n = 67), 96% (n = 64) of patients agreed that the hospital provided them with enough information to protect themselves from COVID-19.

Impact on cancer care

Patients were asked whether they agreed with the following statement: ‘The pandemic has not had any impact on my cancer care.’ The responses are displayed in Figure 1. Over half of patients either strongly agreed or agreed with this statement. Comparing the answer between White/White British and Black, Asian and minority ethnic (BAME) groups, 38% of BAME either agreed or strongly agreed whereas 59% of White/White British agreed or strongly agreed with the statement. Of those that did not state their ethnicity 53% responded to say that they agreed or strongly agreed with the statement. The data was not broken down into other ethnic groups as the responses are too low.

Figure 1.

Response to whether participants agree with this statement: The pandemic has not had any impact on my cancer care.

Patients were asked if their care and/or treatment had been delayed. For 59% (n = 48) it had not and 18% (n = 15) did not respond. Of the 23% (n = 19) that said yes their care and/or treatment had been delayed, there doesn’t appear to be any correlation with ethnicity, but the majority (7 out of 19) were from / were being cared for at a specific hospital site. Patients appeared to have an understanding of the reasons contributing to the delays:

‘Treatment was slightly delayed due to isolation period, but this is understandable to protect all patients in the wards.’

‘I regularly attend hospitals for my chemo and staging scans. I found the care unchanged and safe. I am waiting a surgery which is not life threatening and that has been postponed until the NHS is less under stress. I am happy with my care.’

As expected, there were other patients who were unhappy with the delay:

‘I developed a port site hernia after my prostate operation still awaiting treatment refer on 1st June 2020 not happy.’

Patients were asked what parts of their care had been affected by COVID-19, for which they were able to select more than one option. The results are displayed in Figure 2. A third of all patients that answered agreed that their outpatient appointments had been affected in some way. None of the patients had had their radiotherapy affected and only one patient had had their chemotherapy treatment affected by the pandemic.

Figure 2.

Areas of cancer care that were effected by COVID-19.

Patients were asked how their experience of being a cancer patient had changed as a consequence of the pandemic. They were asked to choose from a list of possible emotions they may have felt, of which they could pick more than one (Figure 3).

Figure 3.

Patient emotions felt during the pandemic.

Patients found their experience both worrying and challenging, but they also found it positive, good, acceptable and manageable. There did not seem to be an age group who felt more strongly towards a particular emotion, but those who are BAME suggested that they were worried (10 out of 26) whereas the White/White British had more positivity and found it manageable (11 out of 39 for each emotion).

Feeling supported by staff

Those patients who had stayed as an inpatient during the pandemic were asked whether there was anything that could have been done to improve their stay. They were asked to select from a variety of answers and could choose more than one answer (Figure 4). For 49 patients this question was not applicable to them. For those that did answer the majority (n = 17) said that staff did everything they could for them, as described by a carer:

‘The service from the hospital has been excellent. The patient is deaf with minor learning difficulties & mental health issues, all were taken into consideration during her cancer treatment. Clear masks were worn by hospital staff as the patient relies on lip reading.’

From a patient:

‘[My doctor] and his team, all the nurses at [hospital] so helpful throughout treatment can’t thank them enough.’

Figure 4.

Requirements of inpatients.

Patients were asked if other forms of support were offered to them. Out of those who answered this question (n = 67), 48% said that staff informed them about other sources of support such as Macmillan, Maggie's and psychology services. For 39% it was not required and only 13% said that staff did not inform them. Not all patients felt supported throughout the pandemic:

‘Feel neglected since COVID treatment has took priority over all else.’

‘I feel anxious and alone without any support for my health concerns.’

Patients were asked if they had been able to contact their CNS or keyworker during the pandemic, 75% of the 67 patients who answered were able to contact their clinical nurse specialist (CNS) or keyworker with queries. On the other hand, a patient explained how they found it difficult to reach their CNS:

‘When I was invited for the Covid vaccination, I contact my post-transplant Clinical Nurse for reassurance as I was worried about allergic reaction from the vaccine having developed several drug-related allergies during/after my chemotherapy and stem-cell transplant treatments. I did not receive any response.’

Discussion

The respondents to the survey provide a good representation of the population in North East London except for patients from the Asian/Asian British ethnic group. Just over a fifth of the patients who responded preferred not to state their ethnicity which may have affected the overall ethnicity split. When comparing the respondent's ethnicity data with that of those who were invited to participate, there were comparatively fewer Asian/ Asian British respondents (Table 1). This highlights that in future surveys some work needs to be conducted to understand why members of this ethnic group are less likely to share their views through such surveys. The Picker institute detail some reasons as to why certain ethnic groups might not respond.¹¹ These include, unwillingness, the investigator's inability to contact respondents and communication barriers.¹¹ Comparing the response rates to other larger surveys conducted by the Trust such as the Friends and Family Test (FFT), language and literacy also appears to be a barrier.

From the first theme of information provision and safety around COVID-19, the hospital has done well in providing patients with the required information. Most patients felt safe if they visited the hospital during the pandemic and they received the necessary information about changes to outpatient appointments as well as information on how to keep safe during the pandemic.

As can be seen from Figure 1, most patients either agreed or strongly agreed that the pandemic had not had any impact on their cancer care. Even though the sample size is small, this is reassuring and provides different evidence from the literature where there are a number of examples of the disruption the pandemic has had on cancer care overall.^12–14 It does appear that those who are BAME tended to disagree with this statement more than those from a White/White British ethnic group. It is acknowledged that ethnic minority groups are disproportionately affected by socio-economic deprivation which is a key determinant of health status.¹⁵ However, the reasons for their response is unclear and due to small patient numbers, it is not prudent to draw any firm conclusions.

Only 23% of patients said that their care and or treatment had been delayed. This is very similar to the percentage reported by Macmillan Cancer Support (22%).¹⁴ Generally, those who had delays were understanding of the reasons behind this. The study did not specifically capture the duration of their delays, which might have impacted their experience e.g., the patient who is unhappy about still waiting for their port site hernia repair.

It is understandable that a third of patients stated that their outpatient appointment had been affected by the pandemic as the hospital group underwent an efficient change improvement to switch face to face clinics to virtual clinics. A separate piece of work has been undertaken to understand the experience patients have had of these virtual clinics.¹⁶

Another change that occurred at the Trust was to minimise the impact of changes to therapy. Many patients had their radiotherapy or chemotherapy treatment adjusted whereby they were still able to receive treatment but perhaps over a shorter period of time, or they were able to take their medication at home. This might be one of the reasons patients didn’t feel that the care they received from these two services was impacted too much. Spencer et al. reported that radiotherapy activity in England fell during the first wave of COVID-19 but that an increase in radiotherapy since might have helped mitigate against the loss of surgical capacity.¹⁷

The patients who responded to the survey displayed a range of emotions. It is important to note that these emotions may have varied throughout the pandemic. Patients were able to select more than one emotion from the responses. Even though the results suggest that BAME patients were more worried and that White/White British patients had a more positive and manageable experience, it is important to note that the sample size is small as a whole and further reduced when broken down by ethnicity. The authors recommend that further research is carried out in this area, specifically to explore the difference in experience between patients of different ethnicities.

With regards to feeling supported by staff, those who stayed as an inpatient felt that staff did everything they could to support them during their stay. One area of improvement is for staff to provide more information on the patient's ongoing treatment plan. This is unlikely to be something specific just to COVID-19. Less than half of patients were informed about other sources of support available such as charitable organisations and the services offered by the psychology department, but over a third (39%) said that it was not required for them. It is difficult to understand from this whether they were fully informed to make a decision about whether it was appropriate for them or not. Another area of improvement could be to raise the awareness and profile of the supportive services that are available to cancer patients.

It may seem a low percentage that only 75% of patients were able to contact their CNS during the pandemic. It is important to remember that a large number of CNSs were redeployed during the pandemic to ward areas and therefore may not have had the capacity to respond to every patient call. When planning for potential future waves of the pandemic it is necessary to focus on how patients will be supported if CNS staff are redeployed. Automated phone directory systems or call centres may be a suitable solution.¹⁸

Limitations

A response of 82 out of 600 is a low response rate and therefore this needs to be taken into account when drawing conclusions from this study. Although an effort has been made to break down the data by ethnicity, no firm conclusions can be made because this reduces the sample size further. It does highlight the need to collect more data on this topic to explore any possible deviations due to ethnicity.

As the survey progressed more respondents chose not to complete all the questions. This may signify that the survey was too long and highlights the need to balance asking additional probing questions to get a deeper understanding with the risk of losing respondents mid-way through the survey.

Keeping in mind speed, cost, and the desire to reduce infection spread, the survey was only sent out via text message and therefore this creates a barrier to those who do not have a smart phone or are not used to completing surveys in such a manner. This relates back to the report from Picker which suggests that some participants are more familiar with a paper survey and find it easier to read the questions.¹¹

Conclusion

The pandemic has had a major impact on health services worldwide and it's important to understand how this has affected the care and mind-set of our patients. This will enable healthcare providers to prioritise areas with the highest potential to improve patient experience and care. This study has highlighted some important patient needs and areas for further research.