Introduction
Methods
The ePRO system
Symptom severity level | ePRO system action/advice | Example of ePRO action or advice for shortness of breath |
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Level 0: minimal/no symptoms | No patient advice required | Thank you for completing the questionnaire |
Level 1: expected symptom(s) | Patient advice: self-management advicea | Some shortness of breath after physical activity such as climbing the stairs is a normal part of recovery. You may wish to consider the advice below… |
Level 2: potentially concerning symptom(s) | Patient advice: contact a healthcare professional today if symptom is new or has not already been reported | If you have not already discussed your shortness of breath with your medical team we recommend that you contact your CNS team today to discuss your symptoms |
Level 3: symptom(s) indicative of a complication | (i) Patient advice: contact a healthcare professional immediately (ii) Clinician alert: automated email to a Cancer Nurse Specialist | We recommend that you contact the hospital now to discuss your symptoms with the medical team. If you are unable to contact the CNS team, please call your GP to discuss your symptoms today |
Participants
Data collection
Weekly telephone interviews
End-of-study interviews
Data analysis
Results
Participants (n = 16) | |
---|---|
Sex, n (%) | |
Male | 11 (69) |
Age, years | |
Mean (SD)a | 63 (10) |
Range | 43–73 |
Ethnicity, n (%) | |
White British | 11 (69) |
Chinese | 1 (6) |
Not stated | 4 (25) |
Cancer diagnosis, n (%) | |
Yes | 9 (56) |
Length of hospital stay, days | |
Mean (SD)a | 13 (10) |
Range | 3–35 |
Surgical procedure received, n (%) | |
Oesophago-gastric resection | 6 (38) |
Hepatobiliary resection (inc. Whipples) | 10 (62) |
Marital status, n (%) | |
Married/civil partnership/cohabiting | 14 (88) |
Single | 1 (6) |
Widowed | 1 (6) |
Education, n (%) | |
Further education | 14 (88) |
Degree/professional qualification | 10 (62) |
Employment status, n (%) | |
Retired | 8 (50) |
Working full-time | 5 (31) |
Working part-time | 2 (13) |
Not in paid employment | 1 (6) |
Computer usage, n (%) | |
Daily | 15 (94) |
Weekly | 1 (6) |
Proficiency with computer, n (%) | |
Easy | 14 (88) |
Sometimes difficult | 2 (12) |
Themes, sub-themes and examples of codes | Example quotes |
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Theme 1: Reassurance ePRO advice to contact HCP Prompted contact with HCPs; minimises isolation; enables appropriate choices in contacting HCPs; reassurance gained from HCP contact; clinical input following HCP contact | PT 1882 “I wouldn’t know whether to contact anybody or not” PT 1213 “I’d already called on Tuesday…I suppose I would have [called an HCP] if I hadn’t have done it already” PT 1230 “I did speak to the GP just about a little bit of wound drainage, and quite reassuring really” PT 1882 “So I got in touch with my GP and she said she’s going to put me on different antibiotics” |
Isolation and uncertainty Isolation post-discharge; ePRO provides link with HCP; uncertainty about symptoms and expectations of recovery; lack of recall of guidance/advice given pre-discharge; anxiety about ‘normality’ or symptoms | PT 1230 “I worry, I don’t want to bother anybody, so until [advice from ePRO to contact HCP], yeah it’s weird” PT 1242 “Sometimes you feel you shouldn’t ring your nurse, you know” PT 1213 “I think anybody in my position would be a bit worried about the diarrhoea, you know if somebody can reassure you that this can happen…and then it makes you feel better, [otherwise] you just think ‘Oh what am I doing wrong?’…If you read that [ePRO advice] first…that it’s normal for a bit, but if it lasts you’ve got to get in touch with somebody” PT 1226 “I suppose in a sense it reminds me not to worry over much about feeling a bit tired…because you know it’s there and it’s a natural consequence of what’s happened…because it’s ‘don’t worry about it, this is what happens, it’s normal.’ So in that way I found it reassuring” |
Progress Impact of graphs; enables participants to track and acknowledge improvements in symptoms; accurate reflection of symptom experiences; improves understanding of the process of recovery | PT 1237 “It helps you to see that obviously they’re expecting you to possibly have this or possibly have that [symptom]. And also…looking at the graph[s] and looking at my previous answers and seeing how they’ve changed, and interestingly as I said those euphoric first answers where everything was absolutely wonderful [when I was] still on tramadol and goodness knows what else. And then the reality of how I really am and then slowly seeing the recovery over that time has been very helpful” PT 1242 “It’s probably the first time I’ve looked at it and thought that’s good, because I had a few wobbles the last couple of weeks, I had an infection, so yeah it was quite encouraging, cuz [sic] I do feel quite a lot better” PT 1226 “I find it reassuring when I look at the graphs having completed it all…I find that it actually gives a pattern which reinforces how I feel about what has happened since the op” |
Theme 2: Empowerment Advice is tailored and specific; advice is a reminder of what to do and of information previously given by HCPs; directly contributes to symptom management; eases anxiety by confirming symptoms are ‘normal’; enables participants to feel more in control of their recovery | PT 1208 “I think with the pills and with the advice on the [ePRO system] I feel in control of things” PT 1226 “It just showed me that it was exactly the right thing to do…Because I think it helps towards recovery, rather than just dealing with it myself” PT 1213 “[ePRO advice] is talking about what you can do, what’s good to help you. Whereas the hospital website is more or less telling you this is what happens” PT 1224 “You can then look at the suggested actions you can take to alleviate those symptoms” PT 1208 “It’s all the guidance which the doctors told me and what [ePRO] tells me as well. So it’s a constant reminder to obey the rules” |
Theme 1: Reassurance
Isolation and uncertainty after discharge
Some participants felt uncertain about what symptoms they were likely to experience and what to expect during their recovery. Many attributed these feelings to a lack of information provision prior to discharge.PT 1224 “So [ePRO system] makes you feel not cut off…Because otherwise I think the issue can be you get all this attention in hospital, and then suddenly that’s it – you’re off on your own.”
For some, this led to anxiety regarding whether their symptoms were ‘normal’ for their stage of recovery, leading them to question how well they were managing. In these instances, the ePRO self-management advice reassured participants that their symptoms were typical.PT 1209 “When I first came home, I was a bit surprised by the fact that I wasn’t really given much in the way of guidance. As to what to expect, in terms of…the symptoms I might experience when I came home, and what I should or shouldn’t do…”
PT 1208 “[The ePRO system] confirms that in the [tailored feedback] that that’s normal for this period of time in your development so I find that, the [tailored symptom advice] at the end quite reassuring.”
ePRO system advice to contact HCP
While ePRO system feedback acted as a prompt to contact HCPs, data from weekly interviews with Cancer Nurse Specialists (reported elsewhere, Richards [29]) suggests that it did not result in participants making additional unnecessary calls to their care teams. When participants were already in contact with HCPs and felt that their symptoms were being appropriately managed, or had upcoming clinical appointments, many reported that they did not make additional calls to clinicians.PT 1219 “I spoke to the [cancer nurse specialist] and she put me in touch with the dietitian. But that all followed on from my completing a questionnaire, so it prompted me to do it I think.”
When participants did contact HCPs following ePRO system feedback, this often resulted in clinical interventions such as additional appointments or new prescriptions, or additional reassurance and advice.PT 1224 “Well as I had an appointment…this morning…I didn’t see any need to call anybody.”
PT 1213 “[The cancer nurse specialist] said I’m going to ring your GP…and they rang me back and said we’ll do a blood test.”
Progress
PT 1226 “You don’t see them in isolation as one week, you see [graphs of symptom reports] as a pattern of progress and that’s the way to look at them…when I look along the row from where I was to begin with to now where most [symptoms] are at zero I’m pleased.”
Theme 2: Empowerment
The advice confirmed whether participants’ symptoms were typical, eased their anxiety and increased their confidence in their ability to manage their recovery.PT 1224 “[When] you’re having a bit of difficulty you can then look at the suggested actions [and tailored advice] you can take to alleviate those symptoms.”
The usefulness of the ePRO system advice was underpinned by participants’ feelings that it was tailored specifically for their symptoms. Participants felt like it was “aimed” at them, and that the advice was appropriate and achievable.PT 1226 “I go through the questionnaire and by the time I’ve finished…I’m comfortable in my own mind, and therefore I don’t need to go searching elsewhere [online for information about symptoms]…I actually don’t worry unnecessarily…[the tailored advice] just showed me that it was exactly the right thing to do…Because I think it helps towards recovery, rather than just dealing with it myself.”
The ePRO system enhanced information provision by ensuring participants had instant access to relevant symptom self-management advice. For many participants, the ePRO system advice prompted them to recall information they had received from clinicians earlier on in their recovery, but which they had subsequently forgotten. This was the case for symptom management strategies, and for prescribed medications.PT 1208 “At the end it all sort of comes together and it gives you advice…It works well…and aimed at me specifically.”
PT 1242 “I must have read it [patient information leaflet] in the first week or so and I’d forgotten all about it. Yeah…[I’ll] try to follow that [ePRO system] advice…It’s reminded me and [I’ve] thought I have got some medication for that, I should be taking it.”