Introduction

Topical steroid withdrawal (TSW) is a term used to describe a set of adverse effects following cessation of prolonged and/or higher-potency topical corticosteroid use. Evidence regarding the existence of TSW as a distinct diagnosis is insufficient and contradictory, creating controversy within the medical community.1 In a study of dermatologists in the United Kingdom, the majority of respondents believed that “most people complaining of TSW are simply experiencing ordinary eczema which relapsed because the TCS was stopped.”2 Unsurprisingly, patients may feel dismissed by providers who do not acknowledge TSW, resulting in avoidance of traditional medical treatments and topical corticosteroids in favor of alternative treatments.1,2

The phenomenon of TSW has garnered increasing attention on social media. In fact, the aforementioned study of UK dermatologists found that some participants considered TSW a purely social construct due to its online presence.2 Compared to 2016, the year 2020 saw a 592% increase in performance of the hashtag #topicalsteroidwithdrawal on several social media platforms, including Reddit.3 A study of Reddit users suggests that those in search of health information on Reddit are likely to act on information provided on the platform, regardless of credibility.4 Therefore, Reddit may serve as a key platform to examine the perspectives and actions of those concerned with TSW.

The ill-defined and debated nature of TSW warrants analysis of perspectives in the subreddit “r/TS_Withdrawal.” Understanding how individuals in “r/TS_Withdrawal” perceive dermatologic care is essential to collaborating with patients who believe they are experiencing TSW. There also exist subreddits for conditions that are more understood and uniformly managed by dermatologists, such as “r/Psoriasis.” This study seeks to analyze and compare the sentiments of Reddit users toward dermatologists in the “r/TS_Withdrawal” and “r/Psoriasis” subreddits. We hypothesize that sentiment towards dermatologists in “r/TS_Withdrawal” will be more negative than those in “r/Psoriasis” due to the ambiguity within the field regarding TSW, with much less uniformity in care, compared to psoriasis.

Materials and Methods

The 999 “top” Reddit posts were downloaded from the “r/TS_Withdrawal” and “r/Psoriasis” subreddits using the Python Reddit API Wrapper. While 1000 posts were queried, 999 were extracted because one post in each subreddit was not retrievable.

Posts with no body text (ie if only a picture or title was posted), were removed from the analysis. The remaining posts were tokenized into paragraphs. Previous analyses of lexicon-based sentiment analysis tools, including the one employed in this study, demonstrate better performance with shorter microblog-like input.5,6

The presence of the terms “dermatologist(s),” “derm(s),” “doctor(s),” “dermatology,” and “physician(s)” was used to separate “dermatologist-related paragraphs” (DRPs), containing sentiment towards dermatologists, from “non-dermatologist-related paragraphs” (non-DRPs). One researcher (CC) validated the DRPs using the following inclusion criteria, moving paragraphs to the non-DRP group when appropriate. The paragraph had to contain at least one of the following themes related to dermatologists: an opinion, feeling, evaluation of dermatologist knowledge, treatment, consulting a dermatologist, perceived motives, and collaboration. Paragraphs mentioning doctors that were explicitly not dermatologists were excluded. Additional details can be found in Table 1.

Table 1.Dermatologist-related paragraph (DRP) inclusion criteria
Theme Examples
Paragraphs containing the following themes were included in the DRPs:
Opinion
  • Overarching opinions about dermatologists/dermatology as a whole
  • Whether dermatologist was helpful
Feeling
  • How they felt about their experience with a dermatologist
Evaluation of dermatologist knowledge
  • Whether they believe what a dermatologist said is valid/true
  • Beliefs about whether they have been properly diagnosed
  • Expressing belief that a dermatologist is knowledgeable
  • Citing knowledge from a dermatologist
  • Expressing what they believe a dermatologist should have done
Treatment
  • Decisions about whether to follow a dermatologist's treatment plan
  • Feelings about dermatologist-prescribed treatments and regimens
  • Dermatologist-prescribed treatment outcomes
Consulting a dermatologist
  • Feelings/decisions about consulting a dermatologist
Perceived motives
  • Perceptions of dermatologist motives
Collaboration
  • Collaboration with a dermatologist

Sentiment analysis was performed using the Sentiment Intensity Analyser of the Python Natural Language Toolkit (https://www.nltk.org/). This tool uses a pretrained sentiment analyzer called VADER (Valence Aware Dictionary and sEntiment Reasoner). VADER’s rule-based model considers the sentiment of the words, as well as features such as capitalization, punctuation, and negation.5 The outputted sentiment score (SS) incorporates both polarity (positivity/negativity) and intensity of sentiment, ranging from –1 (most negative) to +1 (most positive). SSs were calculated for DRPs and non-DRPs. Using a Fisher’s exact test and Student’s t-test, SSs of DRPs and non-DRPs were compared within each subreddit. SSs of DRPs were compared between the two subreddits using a Student’s t-test.

Results

Of the top 999 posts in “r/TS_Withdrawal,” 250 posts had no text and were excluded. The remaining 749 posts (3,690 paragraphs) ranged from November 22, 2015 to January 16, 2024. 291 paragraphs mentioned dermatologist-related terms. After validation, 72 paragraphs were removed, leaving 219 DRPs. Of the top 999 posts in “r/Psoriasis,” 691 posts had no text and were excluded. The remaining 308 posts (1,493 paragraphs) ranged from September 15, 2014 to January 17, 2024. 140 paragraphs mentioned dermatologist-related terms. After validation, 54 paragraphs were removed, leaving 86 DRPs. Representative quotes are presented in Table 2.

Table 2.Representative quotes from dermatologist-related paragraphs in “r/TS_Withdrawal” and “r/Psoriasis”
Quote Sentiment Score Upvotes
r/TS_Withdrawal
“2021, my fifth year of TSW. I figured why not turn the bubbling rage at the string of incompetent doctors into something productive …” -0.7717 51
“. . . As much as it would've given me immense pride and satisfaction to have conquered this without the help of doctors and derms (those who failed us in the first place), I think that it would be foolish of me to continue to battle this without help.” -0.943 32
“. . . Constantly wondering when your next flare will be and not having any support from doctors makes you feel so helpless …” -0.9552 39
“And through it all, not a single dermatologist would admit it was the steroids. Only my primary care alluded to it …” 0.7717 25
“Thank you so much to this community for being there for me when every single doctor I faced failed to acknowledge my condition and pushed me to go on stronger steroids. Regularly reading the experiences on this sub is one of the major things that stopped me giving in to them even when I was at my lowest points.” -0.0772 87
“. . . While I certainly understand why those of us in TSW have trouble trusting doctors or opting for pharmaceutical help (after all, we all got screwed by the medical institution at some point), it doesn't help you in the long run to treat all doctors like they're bad. I've found a couple of doctors who are open to my feedback . . . Doctors can be scary, but don't forget that you're on the same team.” 0.6532 51
“Dupixent is far from perfect, but in my eyes it has been a godsend. I no longer itch. I dealt with the common eye side effects with eye drop antibiotics (no steroids). I haven't used any topicals at all whatsoever. My doctor prescribed me protopic for the problem spots, but I have yet to even get the prescription filled. My skin is smooth, albeit scarred and a hyperpigmented in some areas. But those will fade with time and care. I can also now tolerate the sun and eat foods that I used to avoid. Dupixent has allowed me to heal in other areas (digestion, gut health, fitness, mental health), that I wouldn't have been able to otherwise . . .” 0.9161 29
"I started my TSW journey roughly three years ago, after using it since child hood. I was told it was eczema by doctors/dermatologists my whole life, until I found this subreddit and did my own research.” 0 41
r/Psoriasis
“. . . I knew I should've googled it but if a doctor isn't taking it seriously, why should I? It's not a big deal . . .” -0.8709 98
“. . . My first dermatologist was . . . horrible . . . Now I have a dermatologist that I love and I feel like a brand new person.” 0.8558 100
“. . . It’s so frustrating that this whole regiment of creams and ointments continues. It’s like putting a bandaid on internal bleeding. Sorry, feeling extra frustrated today. Grew up in a time when most doctors kept misdiagnosing me with eczema; just had hope that we’ve at least progressed since then.” -0.3697 81
“. . . I showed him my annihilated skin and he was so calm and said ‘we will get you clear, no worries’. I was like ‘ok whatever dude’ as no one had been able to get me totally clear for 20 years and it always came back . . .” -0.2743 123
“I’ve gone through so many different medicines and treatments and dermatologists. All of the treatments have worked for a period of time, then stop working after a bit until I tried a different one. I’ve been using clobetasol recently and it’s worked fine, but I know it’ll stop working soon and I’ll have to find a stronger treatment . . .” -0.8537 124
“. . . In the end I went to a dermatologist and a rheumatologist because my GP could only do so much. I was prescribed methotrexate and steroids - with much apprehension - as I’ve read many posts from other people experiencing side effects. I know everyone is different but I would like to highlight my own positive experience. I experienced fatigue when I first started taking the medication but have had no other symptoms since from the methotrexate. It has had a remarkable effect on my psoriasis and psoriatic arthritis. I am not a medical professional so I would advise to speak to a dermatologist and/or rheumatologist about the best course of treatment but the medication has shown a great improvement . . .” 0.9827 114
Back story: in his 40s my partner developed very stubborn ps. on his shins, scalp, arm pits, genitals and occasionally his face. He was diagnosed by our dermatologist who gave him various treatments which helped, but only to a degree. Then he found--quite accidentally--two solutions. 0.0138 55

Having a relatively negative sentiment was defined as having a SS in the lowest quartile among all 5,183 paragraphs.7 Within each subreddit, DRPs were significantly more likely to have negative sentiment than non-DRPs (p < 0.001) with odds ratios of 2.68 (95% CI = 2.02 - 3.57) and 2.60 (95% CI = 1.59 - 4.18) in “r/TS_Withdrawal” and “r/Psoriasis,” respectively.

Within “r/TS_Withdrawal,” DRPs had a mean SS of -0.14, which was significantly lower (p < 0.001) than non-DRPs (mean SS = 0.069). Within “r/Psoriasis,” DRPs had a mean SS of -0.055, which was significantly lower (p = 0.008) than non-DRPs (mean SS = 0.12). The mean SS of DRPs in “r/Psoriasis” was not significantly higher than that of DRPs in “r/TS_Withdrawal” (p = 0.30). Figure 1 displays the distribution of sentiment scores for DRPs and non-DRPs in each subreddit.

Figure 1
Figure 1.Graphical representation of sentiment scores.

Histograms representing the sentiment scores of dermatologist-related paragraphs and non-dermatologist-related paragraphs in “r/Psoriasis” and “r/TS_Withdrawal.” The vertical red line represents the mean sentiment score in each group of paragraphs. The slope of black line represents the degree and direction of the overall trend of sentiment scores in each group of paragraphs. The slope for each group was determined by creating a linear regression model with the center value of each histogram bin as the independent variable and the density of each bin as the dependent variable.

Discussion

This study examined sentiment towards dermatologists among Reddit users creating posts in the “r/TS_Withdrawal” and “r/Psoriasis” subreddits. In both subreddits, DRPs had significantly more negative sentiment than non-DRPs. This finding suggests that users in both subreddits possess negative sentiments towards dermatologists. While studies exist regarding patient satisfaction with psoriasis treatment, few studies have been conducted on perceptions of dermatologists held by psoriasis and TSW patients. Nonetheless, this finding is consistent with a qualitative study conducted on patients with acne, psoriasis, and eczema.8 Participants commonly reported negative experiences with general practitioners and dermatologists, citing insensitivity to the psychological implications of their conditions.8 A study of dermatology outpatients also found the main determinant in patient satisfaction to be the physician’s interpersonal skills.9 However, these findings contradict a study of public perception of dermatologists in Europe, which found high levels of satisfaction among participants who consulted a dermatologist within the last 3 years.10 To our knowledge, there are no studies examining the perspectives of those who may have TSW towards dermatologists. Further research is needed to characterize patient perceptions of dermatologists.

While we hypothesized that DRPs in “r/TS_Withdrawal” would have more negative sentiment than “r/Psoriasis,” the SSs of DRPs in the subreddits did not differ significantly. Therefore, sentiment towards dermatologists among those discussing a relatively well-managed condition, psoriasis, did not differ from those discussing TSW. Our findings suggest that patients experiencing either condition possess negative sentiments towards dermatologists, despite vast differences in existing knowledge between psoriasis and TSW. Regardless of the level of knowledge, it appears that patient perspectives, collaboration, and trust are necessary to maintain patient-physician relationships and improve management of dermatological conditions.

This study has several limitations. The sample size included only Reddit users who posted to “r/Psoriasis” or “r/TS_Withdrawal.” The perspectives of this population may not be representative of those who do not post or do not use Reddit. While our analysis would be strengthened with analysis of additional platforms, such as Facebook, Instagram, or Twitter/X, Reddit uniquely offered forums for both psoriasis and TSW. Facebook, while possessing groups and posts about these topics, have many scattered posts, many of which are too brief to analyze. Also, we were unable to find a tool to query only the top posts in the groups. The Python Reddit API wrapper and Reddit’s upvote function allowed us to focus on only the top posts that had the most support from other users. For these reasons, we limited our focus to the Reddit platform. Additionally, those who see a dermatologist for their condition likely have a more severe disease presentation and may reflect more negatively on their experience, especially if dermatologic care did not lead to as much improvement as anticipated. Those with more emotional experiences are more likely to post about their experience, influencing SSs. Since VADER works best on short texts, longer paragraphs may not have had representative SSs. Finally, inclusion of posts containing the term “doctor(s)” assumes that the “doctor” was a dermatologist, unless otherwise stated.

The findings of this Reddit sentiment analysis reveal significantly negative sentiment towards dermatologists in the r/TS_Withdrawal and r/Psoriasis subreddits. This negative sentiment highlights the need for the field to place greater emphasis on fostering positive patient experiences, feelings, and perceptions of dermatologic care.

Disclosures

Dr. Lio reports research grants/funding from AbbVie, AOBiome; is on the speaker’s bureau for AbbVie, Arcutis, Eli Lilly, Galderma, Hyphens Pharma, Incyte, La Roche-Posay/L’Oréal, MyOR Diagnostics, ParentMD, Pfizer, Pierre-Fabre Dermatologie, Regeneron/Sanofi Genzyme, Verrica; reports consulting/advisory boards for Alphyn, AbbVie, Almirall, Amyris, Arcutis, ASLAN, Boston Skin Science, Bristol-Myers Squibb, Burt’s Bees, Castle Biosciences, Codex Labs, Concerto Biosci, Dermavant, Eli Lilly, Galderma, Janssen, Johnson & Johnson, Kimberly-Clark, LEO Pharma, Lipidor, L’Oréal, Merck, Micreos, MyOR Diagnostics, Regeneron/Sanofi Genzyme, Skinfix, Theraplex, UCB, Unilever, Verrica Yobee Care; stock options with Codex, Concerto Biosciences and Yobee Care. In addition, Dr. Lio has a patent pending for a Theraplex product with royalties paid and is a Board member and Scientific Advisory Committee Member of the National Eczema Association.

Courtney Chau has no conflicts of interest or relationships to disclose.

Funding

This research received no funding.

Figure Legends

Figure 1. Graphical representation of sentiment scores. Histograms representing the sentiment scores of dermatologist-related paragraphs and non-dermatologist-related paragraphs in “r/Psoriasis” and “r/TS_Withdrawal”. The vertical red line represents the mean sentiment score in each group of paragraphs. The slope of black line represents the degree and direction of the overall trend of sentiment scores in each group of paragraphs. The slope for each group was determined by creating a linear regression model with the center value of each histogram bin as the independent variable and the density of each bin as the dependent variable.