Impact of the COVID-19 Pandemic on Online Obsessive-Compulsive Disorder Support Community Members: Survey Study

Abstract

Background People with obsessive-compulsive disorder (OCD) have faced unique challenges during the COVID-19 pandemic. Research from the first two months of the pandemic suggests that a small proportion of people with OCD experienced worsening in their OCD symptoms since the pandemic began, whereas the rest experienced either no change or an improvement in their symptoms. However, as society-level factors relating to the pandemic have evolved, the effects of the pandemic on people with OCD have likely changed as well, in complex and population-specific ways. Therefore, this study contributes to a growing body of knowledge on the impact of the COVID-19 pandemic on people and demonstrates how differences across studies might emerge when studying specific populations at specific timepoints. Objective This study aimed to assess how members of online OCD support communities felt the COVID-19 pandemic had affected their OCD symptoms, around 3 months after the pandemic began. Methods We recruited participants from online OCD support communities for our brief survey. Participants indicated how much they felt their OCD symptoms had changed since the pandemic began and how much they felt that having OCD was making it harder to deal with the pandemic. Results We collected survey data from June through August 2020 and received a total of 196 responses, some of which were partial responses. Among the nonmissing data, 65.9% (108/164) of the participants were from the United States and 90.5% (152/168) had been subjected to a stay-at-home order. In all, 92.9% (182/196) of the participants said they experienced worsening of their OCD symptoms since the pandemic began, although the extent to which their symptoms worsened differed across dimensions of OCD; notably, symmetry and completeness symptoms were less likely to have worsened than others. Moreover, 95.5% (171/179) of the participants felt that having OCD made it difficult to deal with the pandemic. Conclusions Our study of online OCD support community members found a much higher rate of OCD symptom worsening than did other studies on people with OCD conducted during the current COVID-19 pandemic. Factors such as quarantine length, location, overlapping society-level challenges, and differing measurement and sampling choices may help to explain this difference across studies.

Obsessive-compulsive symptoms and the Covid-19 pandemic: A rapid scoping review

“… – ( Benatti et al, 2020 ) Italy 123 patients with OCD Outpatient clinical sample, recruited from 3 tertiary clinics Age range not stated Not stated Not stated 35.8 % of patients reported worsening of symptoms during the pandemic, which was associated with developed of new obsessions and compulsions – ( Chakraborty and Karmakar, 2020 ) India 84 patients with OCD Outpatient clinical sample Age range not stated Yale-Brown Obsessive-Compulsive Scale (Y-BOCS) April-May 2020 12 % of patients had a >5% worsening of OCD severity on the Y-BOCS. – ( Kaveladze et al, 2021 ) United States 196 patients with OCD Outpatient sample, patient recruited from 3 anonymous OCD online peer support communities Age range not stated, (mean age 24.8 years) Questions adapted from Dimensional Obsessive-Compulsive Scale (DOCS) June-August 2020 92.9 % of responders reported a worsening of OCD symptoms during the pandemic. Some participants were self- diagnosed with OCD ( Tundo et al, 2021 ) Italy 29 patients with OCD Outpatient clinical sample Adults, ≥18 years Yale-Brown Obsessive-Compulsive Scale (Y-BOCS) March-June 2020 13.8 % of OCD patients reported worsening symptoms, higher than the other psychiatric illnesses included in the study.…”

“…Approximately 20 % of each group experienced a relapse of symptoms between initial and follow-up assessment, and this rate did not differ significantly between the groups. Similarly, linear mixed modelling did not find evidence that the pandemic had differentially impacted symptom severity trajectories versus the reference group ( Kaveladze et al, 2021 ).…”

“…An online US survey recruited people via three anonymous online OCD peer support communities and posts on social media pages. The participants were asked to rate to what extent their symptoms in four OCD relevant domains had changed since the pandemic began ( Kaveladze et al, 2021 ), based on questions from the DOCS. The sample of 196 respondents included people who reported being self-diagnosed, suspected they had OCD, or had been professionally diagnosed.…”

Obsessive–Compulsive Disorder During the COVID-19 Pandemic: a Systematic Review

“…Experienced exposure and response prevention clinicians provided an estimate near the middle of this range, reporting that approximately 38% on average worsened during the pandemic (n = 137 clinicians) [19]. Rates of worsening were higher in the online samples, including 36% (n = 47) [20], 73% (n = 37) [18], 76% (n = 394) [21•], 76% (n = 252) [22], 93% (n = 196) [23], resulting in a pooled estimate of 77% (95% CIs 75-80%).…”

“…Although all domains significantly worsened, effect sizes appeared largest for contamination and comparisons of whether increases were greater for the contamination group were not conducted. A retrospective evaluation (n = 196) found higher worsening in those with contamination compared with symmetry symptoms (though no differences with harm or unacceptable thoughts were noted) [23]. A study of patients with remitted or partially remitted OCD found that all patients with worsened OCD during the pandemic (based on repeated Y-BOCS administrations) had a primary contamination presentation [6].…”