{"id":45879,"date":"2019-10-17T11:51:33","date_gmt":"2019-10-17T10:51:33","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=45879"},"modified":"2019-10-18T08:48:49","modified_gmt":"2019-10-18T07:48:49","slug":"diverging-views-on-eczema-treatments-promoting-shared-understanding-between-doctors-and-patients","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2019\/10\/17\/diverging-views-on-eczema-treatments-promoting-shared-understanding-between-doctors-and-patients\/","title":{"rendered":"Diverging views on eczema treatments\u2014promoting shared understanding between doctors and patients"},"content":{"rendered":"

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\u00a0<\/span><\/p>\n

Language in this area has become emotive and contested, contributing to mistrust and misunderstanding. Health professionals have written about “topical steroid phobia”<\/span> 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,” <\/span>whereas medical consensus is that “red skin syndrome” is a consequence of rare over-use, not the result of a common addiction. [2,<\/span>3]<\/span>\u00a0Such different perspectives have major consequences for people with eczema, particularly children.\u00a0<\/span><\/p>\n

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,<\/span> can lead parents to seek resolution online. [5] Many choose online discussion forums <\/span>where narratives are often polarised and combative, leading to further bewilderment and confusion. [6]<\/span><\/p>\n

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. [<\/span>7] <\/span>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, <\/span>and (ii) rejection of the use of topical corticosteroids altogether. [8,<\/span>2]<\/span><\/p>\n

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.”\u00a0<\/span><\/p>\n

Further complications arise when organisations are part funded by the pharmaceutical industry. [9]\u00a0 Commercial actors tend to focus their attention on a small number of patient organisations, carefully selected for their “advocacy potential.” [<\/span>9]<\/span> 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]<\/span><\/p>\n

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\u2019t have the time or resources to “turn” what they view as an unsubstantiated idea. Some have called for \u201cbetter evidence, better presented, better explained, and applied in a more personalised way,\u201d<\/span> 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.\u00a0<\/span><\/p>\n

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<\/span> and need more support in highly polarised contexts such as use of topical corticosteroids for eczema. [13]<\/span><\/p>\n

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\u00a0 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.\u00a0<\/span><\/p>\n

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.<\/span><\/p>\n

 <\/p>\n

\"\"<\/a>Miriam Santer<\/strong> 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.<\/span><\/em>Follow Miriam Santer on Twitter: @MiriamSanter<\/a><\/span><\/em><\/p>\n

Competing interests<\/strong><\/span>:<\/span> None declared<\/span><\/em><\/p>\n

 <\/p>\n

 <\/p>\n

\"\"<\/a>Amanda Roberts\u00a0<\/i><\/b>is\u00a0a person with lifelong experience of eczema, both as a patient and a carer.\u00a0\u00a0She helps, with NHS dermatology health care professionals, run the web based Nottingham Support Group for Carers of Children with Eczema\u00a0www.nottinghameczema.org.uk<\/a><\/i><\/p>\n

Twitter:\u00a0<\/b>@eczemasupport<\/a><\/p>\n

Competing interests:<\/b>\u00a0None declared<\/em><\/p>\n

References:<\/b><\/p>\n

    \n
  1. Li AW, Yin ES, Antaya RJ. Topical Corticosteroid Phobia in Atopic Dermatitis: A Systematic ReviewTopical Corticosteroid Phobia in Atopic DermatitisTopical Corticosteroid Phobia in Atopic Dermatitis. <\/span>JAMA Dermatology<\/span><\/i> 2017;153(10):1036-42. doi: 10.1001\/jamadermatol.2017.2437<\/span><\/li>\n
  2. International Topical Steroid Addiction Network\u00a0 [Available from: <\/span>https:\/\/www.itsan.org\/<\/span><\/a> accessed 7 June 2019.<\/span><\/li>\n
  3. Hajar T, Leshem YA, Hanifin JM, et al. A systematic review of topical corticosteroid withdrawal (\u201csteroid addiction\u201d) in patients with atopic dermatitis and other dermatoses. <\/span>Journal of the American Academy of Dermatology<\/span><\/i> 2015;72(3):541-49. e2.<\/span><\/li>\n
  4. Toddler addicted to eczema cream suffers agonising red raw skin after coming off treatment. <\/span>The Sun<\/span><\/i> 2017.<\/span><\/li>\n
  5. Santer M, Burgess H, Yardley L, et al. Experiences of carers managing childhood eczema and their views on its treatment: a qualitative study. <\/span>British Journal of General Practice<\/span><\/i> 2012;62(597):e261-e67. doi: 10.3399\/bjgp12X636083<\/span><\/li>\n
  6. Teasdale E, Muller I, Santer M. Carers’ views of topical corticosteroid use in childhood eczema: a qualitative study of online discussion forums. <\/span>British Journal of Dermatology<\/span><\/i> 2017;176(6):1500-07.<\/span><\/li>\n
  7. NICE. Clinical guideline 57. Atopic eczema in under 12s: diagnosis and management, 2007.<\/span><\/li>\n
  8. Dr Richard Aron\u00a0 [Available from: <\/span>http:\/\/www.draron.com\/<\/span><\/a> accessed 7 June 2019.<\/span><\/li>\n
  9. Ozieranski P, Rickard E, Mulinari, Shai. Exposing drug industry funding of UK patient organisations. <\/span>BMJ<\/span><\/i> 2019;365:l1806. doi: 10.1136\/bmj.l1806<\/span><\/li>\n
  10. Banos B. Preventable: protecting our largest organ, 2016.<\/span><\/li>\n
  11. Greenhalgh T, Howick J, Maskrey N. Evidence based medicine: a movement in crisis? <\/span>Bmj<\/span><\/i> 2014;348:g3725.<\/span><\/li>\n
  12. Joseph-Williams N, Lloyd A, Edwards A, et al. Implementing shared decision making in the NHS: lessons from the MAGIC programme. <\/span>Bmj<\/span><\/i> 2017;357:j1744.<\/span><\/li>\n
  13. Coulson NS, Shaw RL. Nurturing health-related online support groups: Exploring the experiences of patient moderators. <\/span>Computers in Human Behavior<\/span><\/i> 2013;29(4):1695-701. doi: <\/span>https:\/\/doi.org\/10.1016\/j.chb.2013.02.003<\/span><\/a><\/li>\n<\/ol>\n

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    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 […]<\/p>\n

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