Participant recruitment and characteristics
Figure 1 shows the recruitment process for parents and healthcare professionals (n = 37). The four other stakeholders were self-selected from the organisations approached. Table 1 describes interview and/or focus group participants. In all, 13 parents, two children, 24 primary care healthcare professionals, six secondary care healthcare professionals, and four stakeholders took part. Participating parents’ children ranged from 0–11 years, with POEMs between 1–24 (that is, clear/mild to severe eczema),19 and varied ethnicity (three black, one mixed race, nine white). The authors identified three main themes: the challenges of managing eczema, eczema WAP acceptability, format, and content, and finalising the WAP.
Figure 1. Flowchart of recruitment pathway for parents and healthcare professionals. FGD1 = focus group discussion 1. FGD2 = focus group discussion 2. PPI = patient and public involvement.
Table 1. Participant characteristicsa
The challenges of managing eczema
Lack of support and information
Parents voiced frustrations at feeling unsupported by GPs in terms of treatment, and felt their information needs were not met. The absence of specific verbal advice on how to apply emollients and TCS in terms of when, where, how often, and how much was either absent or unclear, leading to uncertainty with treatment application:
‘It was just, stick it on his legs. It really was just a kind of “here you go, this is it, and off you go”.’
(Parent [P]10)
GPs reported not providing written information to patients with eczema regularly. If they did, it was usually a generic leaflet printed from their clinical system or website. When individualised guidance was given, it tended to be in an ad hoc manner:
‘No, I don’t tend to give written information unless I think, “OK, this person really doesn’t know much about what they’re doing,” In which case, I might print out the patient information leaflet from Patient UK.’
(GP4)
Views about causes and management
Several parents held views about the causes and best method of treatment for eczema that differed from the approach expressed by healthcare professionals. Some parents believed eczema had a root cause, such as an allergy, which needed to be identified and avoided, rather than it being an inherent condition that needs to be managed with emollients and TCS. GPs recognised this issue, which they said got in the way of successfully treating and managing the condition:
‘I think they expect that, if they can find the one trigger for the eczema, they can make it all magically go away, so you have to unpick that.’
(GP14)
‘They’re going to give me the same thing they’ve been giving me for about a year, so it doesn’t really make any sense if there’s nothing to cure my daughter of the eczema.’
(P9)
Documenting treatment preferences
Many parents and healthcare professionals agreed that treatment tended to be on a trial-and-error basis. However, finding a treatment regime that works for the family is difficult because parents reported difficulty in remembering names of treatments tried. Also, the reasons for stopping a treatment are not routinely recorded by GPs, meaning failed treatments may be re-issued:
‘It’s [name of treatment] in the notes, but what you get is, it’s unclear whether the treatments worked and they stopped using them, or it hasn’t been effective and they’ve never used it again.’
(GP16, FGD1)
Eczema WAP acceptability, format, and content
Box 2 gives an overview of what participants wanted from a WAP. However, differing opinions on its format and content were commonplace.
Box 2. Overview of WAP preferences
What should a WAP contain?
Individualised action steps for maintenance and flares When to seek medical advice Basic general information
Record of treatment preferences Signposting to further information
What should a WAP look like?
Ideally no more than one to two A4 pages Individualised actions on the front and general information on the back Visually appealing, with a balance of text and pictures Electronic and printed formats
WAP format
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Benefits of a WAP
Participants were generally positive about the role that WAPs could play in addressing barriers to eczema management. Potential benefits identified included a documented treatment plan, patients and carers empowered and confident to use treatments, an eczema information resource, and improved clinical outcomes.
Individualised action steps
Participants wanted a treatment plan that was individualised and specific. Also, plans should be presented in a stepped approach, that is: step 1, what to do when the condition is stable; step 2, what to do when there is a flare; and ‘how to get between the two’ steps (paediatric allergy consultant). Early interviewees who were shown the Hillingdon and Asthma UK example WAPs that take this approach thought they were a good model to follow:
‘I really liked that they had four, you know, they had sections on when the skin was kind of manageable, and what to do just to kind of maintain the skin, and then when there was actually a flare.’
(Eczema charity representative 2)
All groups wanted an additional third step indicating action to take if the condition does not respond to advised treatment:
‘There’s not a lot of support from doctors, and it’s hard to know when to take him back. I don’t want to be like a fussy parent, “oh, they’re back again with a bit of eczema”, but like I said, you know, it’s his skin.’
(P3)
Participants agreed that the WAP should be specific about what to use and when, including volume, frequency, and duration. It was also suggested that web links to videos demonstrating how to apply treatments be added.
Some also felt that providing space for a treatment log to document parents’ experiences would help either prevent re-prescribing of failed treatments, or facilitate re-ordering a successful treatment:
‘If I ring up the doctors and say “can I get another, you know, that one”, I couldn’t remember the name of it, so I was like “hang on, I’ve got to find the thing”, and have to go and rummage. So, yeah, if I had it all on there, I’d probably keep that on my fridge or something, and it’d just be all there then, in front of me.’
(P3)
‘What I like, from my perspective as a GP, is the log of previous treatments tried. It’s really common that you ask what’s been used, and it’s difficult to know because the creams look the same, they have names that are unfamiliar and, really, why would people remember unless they’ve logged it down?’
(GP17, FGD1)
Generally, this was described as a log completed by the parent, rather than the clinician.
General information about eczema
Participants also wanted the eczema essentials (such as generic educational information about the nature and chronicity of eczema, the rationale for emollients and TCS, with instructions about how to apply topical treatments, and reassurance and guidance on TCS use) to allay parental fears.
For TCS, healthcare professionals felt it important to explain the fingertip unit (a method of measuring TCS, where one fingertip covers an area the size of two palms):19
‘The fingertip full thing’s quite good, I find. That’s what I quite often say to people, “a fingertip full for this crease”, and if that could be written down, then it’s clear.’
(GP8)
Parents, notably, also wanted non-medical information on how to stop their child scratching, as this was often described as one of the most distressing behaviours related to eczema:
‘J is constantly scratching, like, even in his sleep he does it. He obviously doesn’t know he’s doing it. It would be nice if there was a way to, like, stop him doing that.’
(P3)
Another suggestion was to include a reminder about re-ordering creams, as a delay in ordering repeat prescriptions was identified as a common problem.
The format of the WAP
In terms of format, most parents wanted a paper copy of the WAP to display around the house. Others, ‘in an ideal world’ (P7), would appreciate an electronic copy as well, which would facilitate sharing — such as e-mailing it to school — and retention, as a single paper copy is easily damaged or lost. GPs were focused on ease of access and speed of use. The prevailing opinion was that they wanted the tool to be embedded in their clinical system and pre-populated as much as possible, for example, with patient details and treatments:
‘If it could somehow be integrated into the software of the GP consultation … we have to make some notes in the records, so, if in some way when we’re saying to a patient “put the emollient on morning and the evening and the steroid on in the middle of the day”, or whatever, that typing in types into the form that you can just print off with the one click.’
(GP9)
Once agreed and completed electronically, GPs envisaged it being saved in the medical records, and a printed copy given to the patient (and e-mailed if possible).
The draft WAP had the individualised action steps on the front page, because parents wanted something they could refer to ‘on the fridge’ (P7), or ‘on a wall’ (P5). A traffic light colour coding system, to highlight the different steps, was also favoured: green for clear skin, amber for a flare, red for seek help. GPs cautioned that, as most surgeries do not currently have the resources to print in colour, the WAP needed to be usable in black and white as well.
Finalising the WAP
The interviews identified a tension between having enough information to guide and support the parent, but not so much that it overwhelms or puts off the user. The first focus group felt the balance between these elements was not right in the authors’ draft WAP:
‘I’m a bit overwhelmed in terms of the amount on the page, or the amount in each box. I don’t know why, but that’s my — I can see myself handing this to someone … and then it would have to take time to explain what it all means.’
(GP16, FGD1)
The authors modified the WAP to make it less detailed and, based on the suggestion of the focus group, moved video links to demonstrations of treatment application from the back ‘information page’ to the front ‘action page’.
Subsequent participants felt that this invited users to look at them:
‘I think they look central and they look important, simply because there’s not much other information. It makes you think that these videos will have important things.’
(GP17, FGD2)
This first focus group also helped to reconcile varying views on whether the WAP should be aimed at older children (between 7–12 years old) as well as parents. The group agreed that the authors should adopt a more pictorial approach, because pictures were seen as important, not only for engaging children, but also in terms of simplifying the action steps, and overcoming language and literacy barriers:
‘I think images are sometimes more powerful … most people can, you know, this is the step and this is the arrow so you use this much, and then if it doesn’t improve, then you use — and you keep following the arrows until you get to where you want to be.’
(Pharmacist 1, FGD1).
It was not possible to include a treatment log and keep the document to two sides of A4. GPs were sceptical that parents would have the time or inclination to complete it. This view also emerged in the second focus group. However, it was agreed that, although parents may not complete it at home, it may trigger conversations about treatment acceptability during eczema consultations:
‘Within a couple of weeks you’re saying “oh my gosh, I can’t stand my child being so greased up, I’m stopping using the hydromol, it’s a right pain”, and maybe you don’t remember to write that down. But then, almost the next time you go back to the doctors, and you’re taking this with you, and … you’re only looking at the four things [four treatments written in the log in the WAP], and the doctor’s like, “well, do you want the repeat of those?” And you go “oh, hang on; we’ve stopped using that one ‘cos I hate it”.’
(P13, FGD2)
Because of its potential to promote the discussion and documentation of parents’ treatment preferences, the log was included in the final version. The final WAP, excluding the treatment log, is shown in Figure 2.
Figure 2. Page 1 of the final eczema written action plan (WAP) (© University of Bristol, 2017). For further information and to download a copy of the Eczema WAP, visit http://www.bristol.ac.uk/ewap.
