Study participants
A total of 85 people with Long COVID were randomised to one of the four arms of this feasibility trial. 70 participants (82.3%) were female and 79 (92.9%) were of white ethnicity. The mean age was 46.1 years (range = 25-71). Further participant characteristics can be found in Table 1.
Table 1 – Participant characteristics
Number of participants
|
Total
(n=85)
|
Pacing video
(n=21)
|
Pacing app
(n=22)
|
Pacing book
(n=21)
|
Usual care
(n=21)
|
Age
|
|
|
|
|
|
Age [Mean(SD)]
|
46.1 (10.8)
|
47.3 (9.1)
|
46.7 (10.9)
|
46.8 (8.5)
|
43.9 (11.8)
|
Sex, n (%)
|
|
|
|
|
|
Male
|
15 (17.7)
|
4 (26.7)
|
5 (33.3)
|
2 (13.3)
|
4 (26.7)
|
Female
|
70 (82.3)
|
17 (24.3)
|
17 (24.3)
|
19 (27.1)
|
17 (24.3)
|
Ethnicity, n (%)
|
|
|
|
|
|
White
|
79 (92.9)
|
20 (25.3)
|
19 (24.1)
|
20 (25.3)
|
20 (25.3)
|
Asian or Asian British-Indian
|
3 (3.5)
|
0
|
1 (33.3)
|
1 (33.3)
|
1 (33.3)
|
Any other Mixed/Multiple ethnic background
|
2 (2.3)
|
1 (50)
|
1 (50)
|
0
|
0
|
Other ethnic groups
|
1 (1.3)
|
0
|
1 (100)
|
0
|
0
|
Body mass index (BMI)
|
|
|
|
|
|
BMI [Mean(SD)]
|
28.53 (6.6)
|
28.4 (6.8)
|
28.3 (6.7)
|
28.5 (6.9)
|
28.2 (6.7)
|
Smoking status, n (%)
|
|
|
|
|
|
Never smoked
|
52 (61.1)
|
16 (30.8)
|
10 (19.2)
|
14 (26.9)
|
12 (23.1)
|
Ex-smoker
|
23 (27.1)
|
4 (17.4)
|
9 (39.1)
|
4 (17.4)
|
6 (26.1)
|
Current smoker
|
5 (5.9)
|
1 (20)
|
1 (20)
|
1 (20)
|
2 (40)
|
Currently vaping
|
5 (5.9)
|
0
|
2 (40)
|
2 (40)
|
1 (20)
|
SARS CoV-2 vaccination status, n (%)
|
|
|
|
|
|
Unvaccinated
|
4 (4.7)
|
1 (25)
|
1 (25)
|
0
|
2 (50)
|
One dose
|
2 (2.4)
|
0
|
0
|
1 (50)
|
1 (50)
|
Two doses
|
11 (12.9)
|
1 (9.1)
|
4 (36.4)
|
1 (9.1)
|
5 (45.4)
|
Three doses
|
68 (80.0)
|
19 (27.9)
|
17 (25)
|
19 (27.9)
|
13 (19.1)
|
Employment, n (%)
|
|
|
|
|
|
Unemployed
|
5 (5.9)
|
1 (20)
|
3 (60)
|
1 (20)
|
0
|
Employed but stopped working because of illness
|
31 (36.5)
|
7 (22.6)
|
6 (19.3)
|
10 (32.2)
|
8 (25.8)
|
Employed
|
40 (47.1)
|
9 (22.5)
|
12 (30)
|
8 (20)
|
11 (27.5)
|
Self-employed
|
6 (7.1)
|
3 (50)
|
1 (16.7)
|
1 (16.7)
|
1 (16.7)
|
Retired
|
2 (2.2)
|
1 (50)
|
0
|
1 (50)
|
0
|
Voluntary work
|
1 (1.2)
|
0
|
0
|
0
|
1 (100)
|
Work/Education, n (%)
|
|
|
|
|
|
Stopped working or education
|
27 (31.8)
|
7 (25.9)
|
4 (14.8)
|
8 (29.6)
|
8 (29.6)
|
Working/education time decreased
|
29 (34.1)
|
9 (31)
|
10 (34.4)
|
2 (6.9)
|
8 (27.6)
|
Working/education time increased
|
3 (3.5)
|
1 (33.3)
|
0
|
2 (66.7)
|
0
|
N/A
|
26 (30.6)
|
4 (15.4)
|
8 (30.8)
|
9 (34.6)
|
5 (19.2)
|
Participants were recruited to the study from October 2022 to November 2022 through several routes (Additional file 2).[22]
Out of the 85 participants who were invited to complete the feasibility questionnaire and take part in a qualitative interview, 28 participants completed the feasibility questionnaire and 19 participants took part in a qualitative interview. Further details can be found in Table 2.
Table 2 – Number of interviewees per intervention arm and interviewee type
|
Book
|
Video
|
App
|
Usual care
|
N/A
|
TOTAL
|
Participants who completed the trial
|
2
|
4
|
3
|
1
|
|
10
|
Participants who had not completed the feasibility trial but had not formally withdrawn
|
1
|
2
|
2
|
3
|
|
8
|
Participants who had formally withdrawn
|
|
|
1
|
|
|
1
|
Participants who had consented but had not been randomised
|
|
|
|
|
2*
|
2
|
TOTAL
|
3
|
6
|
6
|
4
|
2
|
19
|
*In addition to the two interviews, nine emailed responses were received.
2. Quantitative data (Feasibility questionnaire, n=28)
This section reports the findings from the feasibility questionnaire, which was completed at the end of the study (Week 12) by 28 participants who had been randomised to one of the pacing interventions (43.7%).
a. Previous use of pacing interventions
Most of the respondents who completed follow up (n=25, 89.2%) had not previously used the pacing interventions selected for this study. However, 21 (75%) had used other pacing interventions before taking part in our study (Table 3). Other pacing interventions used included the Internet (NHS website, ME website, general pacing advice, Spoon theory, YouTube videos), apps (Visible), private fatigue management training, peer support (Long COVID support group), physiotherapy advice, HOPE programme.
Table 3 – Previous use of the feasibility trial’s and other pacing interventions (N = 28)
|
|
Pacing Book
(n=10)
|
Pacing Video
(n=10)
|
Pacing App
(n=8)
|
Previous use of allocated study intervention
|
Yes
|
1 (10%)
|
2 (20%)
|
0 (0%)
|
No
|
9 (90%)
|
8 (80%)
|
8 (100%)
|
Previous use of other pacing interventions
|
Yes
|
6 (60%)
|
8 (80%)
|
7 (87.5%)
|
No
|
4 (40%)
|
2 (20%)
|
1 (12.5%)
|
b. Use of pacing interventions during feasibility trial
Of the 28 participants who completed the feasibility questionnaire, use of the allocated pacing intervention was 100% (10/10) for the video, 90% (9/10) for the book and 62.5% (5/8) for the app (Table 4).
Table 4 – Use of pacing intervention during feasibility trial (used as intended) (N=28)
|
|
Pacing Book (n=10)
|
Pacing Video (n=10)
|
Pacing App (n=8)
|
Was the intervention used?
|
Yes
|
9 (90%)
|
10 (100%)
|
5 (62.5%)
|
No
|
1 (10%)
|
0 (0%)
|
3 (37.5%)
|
The pacing book was used three times or more by eight of the 10 participants over a period of two weeks or more. The participants who used the video (n=10) used it for over a period of two weeks or more (n=3) and watched it on average 1.8 times. The pacing app was used daily for three months by four of the five participants who had used it (Table 5).
Table 5 – Summary of pacing intervention use during the feasibility trial
|
N (%) that used the intervention at least once
|
Frequency and duration of intervention use
|
Book (n=10)
|
9 (90%)
|
Read the whole book for ≥ 2 weeks (80%)
Partly read it (10%)
|
Video (n=10)
|
10 (100%)
|
30% (> 2 weeks)
0% (6-7 days)
30% (4-5 days)
10% (2-3 days)
30% (1 day)
1.8 times (mean)
|
App (n=8)
|
5 (62.5%)
|
Used app daily for 3 months (80%)
Used the app daily for 1 month (20%)
|
Reasons for not using the allocated intervention included not receiving it (pacing book) and already using an alternative pacing app. Amongst the nine participants who had used the pacing book, one used it only partly because of a lack of time and social circumstances, as shown in their open-ended comment:
“Don’t think pacing is working for me because of my job and living alone.” (61 - book)
c. Impact of pacing interventions on daily activities
When asked about the potential impact of the pacing interventions, 18 participants (64.2%) believed that the intervention helped them understand how to pace their usual activities (strongly agree/agree). In addition, 26 participants (92.8%) tried pacing after using the intervention (Table 6). Out of these 26 participants, 13 (50%) reported being able to pace their daily activities (strongly agree/agree) whereas five (19.2%) reported not being able to pace their daily activities (strongly disagree/disagree).
Table 6 – Impact of pacing interventions on daily activities
|
|
Pacing Book
|
Pacing Video
|
Pacing App
|
Did the intervention help you understand how to pace your usual activities?
|
Strongly Agree
|
3 (30%)
|
0 (0%)
|
2 (25%)
|
Agree
|
2 (20%)
|
7 (70%)
|
2 (25%)
|
Neutral
|
2 (20%)
|
3 (30%)
|
0 (0%)
|
Disagree
|
1 (10%)
|
0 (0%)
|
1 (12.5%)
|
NA
|
2 (20%)
|
0 (0%)
|
3 (37.5%)
|
Did you try pacing after using this intervention?
|
Yes
|
9 (90%)
|
10 (100%)
|
7 (87.5%)
|
No
|
1 (10%)
|
0 (0%)
|
1 (12.5%)
|
Were you able to pace your daily activities?
|
Strongly Agree
|
1 (10%)
|
0 (0%)
|
1 (12.5%)
|
Agree
|
2 (20%)
|
6 (60%)
|
3 (37.5%)
|
Neutral
|
3 (30%)
|
3 (30%)
|
2 (25%)
|
Disagree
|
2 (20%)
|
1 (10%)
|
0 (0%)
|
Strongly disagree
|
1 (10%)
|
0 (0%)
|
1 (12.5%)
|
NA
|
1 (10%)
|
0 (0%)
|
1 (12.5%)
|
Reasons for not trying pacing after using the pacing intervention included lack of time due to work and family commitments and believing they were pacing already and not perceiving any additional benefit from the pacing app:
“I work full time and have 3 children. Pacing is not possible” (274 - book)
“I pace well enough already and the Spoonie app doesn’t help me anymore than what I already do. Also has a silly name!” (48 - app)
2. Open-ended comments from feasibility questionnaire and Qualitative evaluation
a. Previous experience of pacing
Most of the interviewees had heard of pacing before and appreciated its value. Several participants had tried to pace before. Some reported that they thought they knew what pacing was prior to the study but realised, after using the trial’s pacing interventions, that they had misunderstood what it was. Most of the interviewees reported using the interventions in the early parts of the study (first 2 to 3 weeks). One of the interviewees (randomised to the pacing book intervention) reported using it before each follow up timepoint.
b. Experience of using pacing interventions during trial
Positive experience
Interviewees generally reported a positive experience from the pacing interventions.
Easy to understand
Interviewees found both the pacing book and the pacing video useful and easy to understand. They particularly liked the simplicity of the book (pictures and text).
Help to plan activities/energy
Some interviewees reported that the study pacing interventions were helpful to plan their day, allocate the correct amount of energy to their activities, stay calm, and feel better:
“Particularly useful for how to manage good vs bad days (i.e., you don’t have to keep up the same level of activity on bad days). Helps to stay calm when symptoms flare and just lean on what you’ve planned for a bad day” (38 – book)
“Very useful as I was trying to push myself into recovery previously and just kept crashing. Pacing is helping me feel better” (59 – video)
“Using the app has enabled me to visualise my daily activity a lot better and pace myself better. I definitely feel an improvement in my overall health since using it” (58 – app)
“App was useful for thinking through how much energy individual activities use” (321 – app)
Being recognised as a Long COVID sufferer
One particular interviewee mentioned that the video focused specifically on Long COVID rather than ME. This gave them a sense of recognition:
“I watched the video a few times, I loved the fact there were people who had experienced Long COVID. It was the same as me. I liked the fact that it was about Long COVID and not ME” (59 – video)
Helps with motivation and focus
Some participants found that the pacing book and the pacing app helped motivate themselves, stay focused and keep pacing:
“I learned new things, it helped me remotivate me” (42 – book)
“I used it consistently throughout the trial period. I used it every day, it gave me a focus. It had a degree of flexibility in itself, it was useful […] I pace, I am still fatigued, I try not to crash, I am careful to not overdo it. It’s not getting any worse. I am better than I was at first. When I climb stairs, I do feel tired but less out of breath, I don’t have to sit down after climbing stairs. My headaches have improved” (321 – app)
“I recognise the signs. I have a 10 mins break between activities and a proper 45 min break, due to the video. I am feeling a bit better. Resting before was just having a cup of tea” (59 - video)
Helps others to understand Long COVID symptoms
Several interviewees believed that both the pacing book and the pacing video could also have an impact on their family members’ understanding of living with Long COVID and what pacing is:
“It would also help friends and families to understand what I’m going through” (95 – book)
“It helped me with communicating to other people about pacing, it helps others understand what I go through, that it’s not “all in my head”… I now have a mission to pace, it helps me pace, it increased my awareness, it developed over time. I didn’t really get it at the beginning. After a while [2 months], I got it” (59 – video)
Concerns about pacing interventions
Despite the positive comments, participants had some concerns about using the pacing interventions, mainly because of family/work commitments, the Long COVID symptoms, the lack of instructions and advice on pacing, content not relevant enough to pacing, and app fatigue.
Family demands, work commitments
While several participants acknowledged that pacing was useful in theory, they also highlighted the fact that the pressures of everyday life (work, family, and unexpected events) made pacing difficult and they struggled to commit to it:
“I have mixed success with pacing due to family demands” (67 – video)
“No one can pace their whole life… there are still unexpected events, deadlines to be met (e.g., tax, accounts) and family demands” (118 – video)
“Pacing is great in theory however life is demanding and there are lots of pressures such as work, parental responsibility, managing symptoms and extreme fatigue” (264 – app)
Impact of Long COVID symptoms
Some participants reported that their Long COVID symptoms impacted how they used the pacing book:
“It is a lot of information and difficult to apply with brain fog and around work” (117 – book)
Similarly, some participants commented on the time it took them to watch the video, especially when suffering from fatigue.
Limited instructions/advice on pacing
Although most understood the instructions included with each intervention, some of the participants who used the Spoonie Day app felt that there were not enough instructions on how to use it:
“There weren’t many instructions – I wasn’t sure what to do and the number of spoons did not match how I felt” (30 - app)
“I found it very difficult to figure out the correct" pacing just with the booklet. I would have appreciated a face-to-face explanation by someone who is experienced” (257 – book)
“The video does not give enough simple practical advice on pacing. I have been trying to pace my activity, which is low (I can’t work) and with a lot of resting but I am still crashing with my symptoms without a real understanding of why (sometimes I do more and don’t crash, sometimes I do crash, sometimes I crash for a day or two, sometimes for more than a week). The video is not in enough depth for me to deal with this sufficiently and learn more” (278 – video)
Content not relevant enough to fatigue
Several interviewees admitted not using the Spoonie Day app much or not at all because they felt it was not relevant enough to fatigue:
“I didn’t use the app much, I designed my own spreadsheet and made it more about fatigue” (105 – app)
Not a mobile app user
Some participants admitted not using mobile app:
“I realised I had used this app before, I didn’t like it, I I’m not a huge app fan anyway” (87 – app)