Recent years have seen increasingly polarised and acrimonious debate about the role of topical corticosteroids in the treatment of eczema. On one side are patients and parents who decline a treatment they believe to be addictive or toxic. On the other are health professionals troubled by what they see as harmful refusal of an effective treatment. In some cases, parents have undergone child protection investigations as a result of declining treatment with topical corticosteroids. Important influencers in the debate include patient organisations, the pharmaceutical industry, and both social and mainstream media 

Language in this area has become emotive and contested, contributing to mistrust and misunderstanding. Health professionals have written about “topical steroid phobia” and “treatment refusal” while patient groups feel this is a dismissal of their legitimate concerns. [1] Some patient groups wish for greater recognition of “topical steroid addiction,” whereas medical consensus is that “red skin syndrome” is a consequence of rare over-use, not the result of a common addiction. [2,3] Such different perspectives have major consequences for people with eczema, particularly children. 

Parents of children with a visible condition, such as eczema, are used to strangers offering well-meaning but often conflicting advice. This, in addition to conflicting advice from health professionals, can lead parents to seek resolution online. [5] Many choose online discussion forums where narratives are often polarised and combative, leading to further bewilderment and confusion. [6]

A divergence in views on eczema treatments is also apparent among different patient groups. Evidence based guidance recommends intermittent topical corticosteroids for children with eczema, with only a very limited role for antibiotics. [7] But a brief online search using the terms “my child has eczema” reveals the overwhelming popularity of two polar opposites: (i) products combing a topical steroid and a topical antibiotic, obtained privately on line, and (ii) rejection of the use of topical corticosteroids altogether. [8,2]

While the websites of mainstream patient organisations often give traditional evidence-based or consensus-based advice, their linked Twitter or Facebook groups can become polarised, angry, and alarming places for new users. Many organisations struggle to provide their patient group with a balanced collective “voice.” 

Further complications arise when organisations are part funded by the pharmaceutical industry. [9]  Commercial actors tend to focus their attention on a small number of patient organisations, carefully selected for their “advocacy potential.” [9] Pharmaceutical company funding is particularly problematic when industry interests align with popular opinion. The existence of topical steroid “addiction,” for example, aligns well with the interests of companies developing alternative treatments for eczema such as biologics. [10]

Effective management of long-term conditions can be heart-breakingly difficult for patients and carers, but also challenging for health professionals in the absence of a shared understanding about treatments. Health professionals may feel that they don’t have the time or resources to “turn” what they view as an unsubstantiated idea. Some have called for “better evidence, better presented, better explained, and applied in a more personalised way,” in order to help patients and carers use the same evidence-base as health professionals when making decisions about treatments. [11] Others emphasise that shared understanding requires more than just readily usable patient summaries. Health professionals need the right tools and the skills to engage in dialogue, but they also need the right attitude. 

Further research to identify the most effective resources for promoting shared understanding would benefit everyone, including moderators of online discussion forums, who play an important role and need more support in highly polarised contexts such as use of topical corticosteroids for eczema. [13]

Health professionals may find it easier to engage in dialogue around treatment controversies if they have a greater awareness of the online background that patients or carers bring to the consultation. As well as fostering these skills and attitudes in undergraduate and postgraduate curriculums, professionals could invest time exploring  exchanges on platforms such as Facebook, Mumsnet, or Student Room. Even brief sessions could improve understanding of patient concerns in disputed therapeutic areas. Ideally, health professionals would have access to a social media “digest” similar to digests available through mainstream media. 

Finally, the lack of transparency around industry funding of patient organisations is a barrier to resolving highly polarised debates about treatments. Greater transparency would help both patients and health professionals identify information that could be biased by commercial interests.

 

Miriam Santer is a GP in Bournemouth and associate professor in primary care research at the University of Southampton. She is also a parent of children with mild eczema.Follow Miriam Santer on Twitter: @MiriamSanter

Competing interests: None declared

 

 

Amanda Roberts is a person with lifelong experience of eczema, both as a patient and a carer.  She helps, with NHS dermatology health care professionals, run the web based Nottingham Support Group for Carers of Children with Eczema www.nottinghameczema.org.uk

Twitter: @eczemasupport

Competing interests: None declared

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