A for planning, BEE for impact
By Amanda Roberts, BEE Trial Public Contributor, 10 November 2020
Clever and thoughtful people who know how to do health research find out something useful from their trial and it quickly automatically makes a positive difference to patients’ care, right? But goodness, how complicated things are. In order to speed up the benefit from the Best Emollients Trial, the team are already planning hard for every possible eventuality. It is important that the team do not know the results until all the questionnaires and information from every participant recruited has been submitted – and this should happen by the end of November 2020 – so that potential for bias is eliminated.
So, in the last month, we have talked to two different groups of patients and carers to get their views about the interpretation of various theoretical outcomes and what they may mean. The amazing thing is that there is so little evidence about moisturisers’ (emollients’) practical value for eczema skin and yet they are the mainstay of treatment options for anybody with eczema. Intuitively those of us with eczema know we could not manage without moisturisers and we patients are really grateful to the wonderful researchers who have devoted three years of their life to find out more about moisturisers for us.
Most people at the meetings were really concerned not to lose access to a choice of moisturisers and specifically to those moisturisers which they have found, after a great deal of trial and error, work for them. And many use a variety of moisturisers for different parts of the body and at different times of the day, times of the year or their life. The variety of moisturisers used depends at least in part to “acceptability”. Those at the meeting told us that acceptability covered things like smell and visibility, as well as the frequency of application and how they suit their skin. And “choice” was another word which the groups discussed. It is not an idle, entitled and pampered offer. It represents the possibility of selecting something that will be used without the patient feeling overly disadvantaged or different from people without eczema. The moisturiser with the least drawbacks.
The groups were delighted that the trial sets out to identify the type of moisturiser most likely to work for a family who do not know what to use on their child, because many in the groups remembered all too well the numbers of moisturisers they had tried before finding something useful to them. Some carers, however, did not realise there was a choice of emollients and some remember being overwhelmed by the initial choice they were offered.
The BEE team have talked to patients. They now need to talk to everyone else who influence a patient's treatment (like doctors, nurses and pharmacists) to find out how they would interpret results and how the team can help them understand whatever will be found. We should know what the research team found by late spring 2021. Of course, we will not necessarily know whether the results apply to all moisturisers in each of the types (cream, gel, lotion or ointment).