JMIR Publications

ABSTRACT

Background:

Topical steroid withdrawal (TSW) is a controversial skin condition among healthcare providers due to lack of evidence, but it has a significant and growing presence on social media. Healthcare utilisation for symptoms attributed to TSW has not previously been studied.

Objective:

This study aims to investigate healthcare utilisation and requests as well as information sources for TSW among patients with atopic dermatitis (AD).

Methods:

An observational cross-sectional study using a questionnaire aimed at adults with AD, experiencing symptoms they attribute to TSW. The questionnaire was posted as a link, free to share with others, in a Swedish TSW-themed Facebook group and remained accessible for four weeks. Descriptive statistics and topical text analysis on open-ended items were used to present and interpret the results.

Results:

The participants (n=82) reported dermatologists (50%), general practitioners (49%), and practitioners of complementary and alternative medicine (CAM) (39%) as the most frequent healthcare contacts for TSW. However, among participants with ongoing symptoms attributed to TSW (n=68), ongoing healthcare contacts with general practitioners, dermatologists, and practitioners of CAM were only reported by 10%, 22%, and 13%, respectively. For symptoms attributed to AD the frequencies of healthcare provider contacts were higher. Almost all participants had sought help from a general practitioner (99%) or a dermatologist (93%) at some point and many had also consulted a practitioner of CAM (72%). Among those with ongoing symptoms attributed to AD, 43% had an ongoing contact with a dermatologist. Participant-requested help and support from healthcare providers included understanding and confirmation of TSW impairments (56%), treatment of symptoms (32%), and increased awareness and information about TSW from healthcare providers (26%). The most common TSW information sources were Facebook (96%), websites (93%), and Instagram (56%) but YouTube (14%), podcasts (10%), and TikTok (6%) were also reported.

Conclusions:

This is the first study to investigate healthcare utilisation patterns related to TSW. The results indicate that the participants received insufficient support from healthcare providers for symptoms they attributed to TSW. The participants initiated and maintained healthcare provider contacts for symptom attributed to AD to a greater extent than for TSW, and sought information and support for TSW elsewhere. Targeted inventions to overcome this could be educational efforts for general practitioners and dermatologists about the current scientific knowledge of TSW as well as the TSW discourse on social media. In addition, healthcare providers need to engage and contribute with evidence-based content about TSW on relevant social media platforms to prevent the spread of misinformation about topical glucocorticoids.