Establishment of quantitative scale for long COVID stigma estimation among UK residents

In a recent study published in PLoS ONE, researchers developed and validated the long coronavirus disease (COVID) stigma scale (LCSS) to quantify the burden of long COVID stigma in the United Kingdom (UK).

Long COVID stigma could hinder population health by compromising patients’ mental health and interactions with healthcare systems. The development of evidence-based health strategies to tackle long COVID stigma requires descriptive data on the condition, inclusive of prevalence estimates, and a validated scale for the precise capture of time-varying changes in the three key domains of long COVID stigma: enacted sigma, internalized stigma, and anticipated stigma.

Enacted stigma is referred to as overt discrimination of long COVID patients; internalized stigma refers to internalizing and self-applying negative associations such as feelings of shame and worthlessness to their condition (i.e., long COVID); anticipated stigma involves expectations of ill- or biased treatment by other individuals. Each stigma mechanism could affect the emotional well-being, mental and physical outcomes, and health-seeking behavior of long COVID patients.

About the study

In the present study, researchers developed and validated the LCSS scale for quantitatively estimating the stigma associated with long COVID based on follow-up online survey data of individuals living with long COVID in the UK.

Follow-up data from co-produced online surveys on long COVID using convenience- and non-probability-type of sampling were analyzed. Follow-up long COVID stigma surveys comprised 13 questions on the three long COVID stigma domains, i.e., enacted (five questions), anticipated (four questions), and internalized (four questions) stigma.

In addition, the survey incorporated depressive symptom measures and disclosure concerns since they have been associated positively with health-associated stigma. The survey questions were designed based on scales used to assess chronic conditions such as human immunodeficiency virus (HIV), ME/CFS (myalgic encephalomyelitis/ chronic fatigue syndrome), and emerging qualitative literature on the stigma associated with long COVID. In addition, feedback obtained from long COVID patients was considered.

Questions were designed to obtain data on demographic parameters, work capabilities, the status of employment, disease patterns and their health impacts, persistent COVID 2019 (COVID-19) symptoms, clinically diagnosed long COVID or other medical conditions, COVID-19 vaccinations, and stigma experiences. The survey included only adults with suspected or confirmed COVID-19 who were not hospitalized in the initial 14 days of developing symptoms and those who completed baseline surveys in November 2021.

The baseline survey was conducted in November 2020 and comprised 2550 community-dwelling long COVID patients sampled by convenience non-probability sampling and enrolled from social media. CFA (confirmatory factor analysis) was performed to test whether LCSS comprised the three stigma domains.

The team evaluated the validity of concomitant criteria based on the disclosure concerns and scores for the eight-item patient health questionnaire (PHQ-8). Two estimates about the long COVID stigma were determined. The first estimate predicted the prevalence of survey respondents whose answers were at least ‘sometimes’ to ≥1 LCSS question. The second estimate predicted the prevalence of participants who responded as ‘always/often’ to ≥1 LCSS question.

Results

In total, 1166 individuals filled out follow-up surveys on long COVID stigma, 966 of which were UK residents, and 888 answered the LCSS survey questions. The average age of the participants was 48 years, and 85% of them were female. Most of the respondents lived in England, Scotland, Wales, and North Ireland, and 76% of the survey respondents had attained at least university-level education.  

The overall prevalence estimates of experiencing long COVID stigma at least ‘sometimes’ and ‘always/often’ were 95.0% and 76.0%, respectively. Nearly 50% of the long COVID patients (n=460) had been diagnosed with the condition clinically. Factor loading values for enacted, internalized, and anticipated stigma ranged between 0.7 and 0.9, 0.75 and 0.8, and 0.6 and 0.9, respectively.

The fit of the study model was determined as good, and the latent correlations between the three long COVID stigma domains were found to be significant. In addition, enacted and anticipated stigma correlated positively. Concurrent criterion validity testing showed that the overall LCSS and the individual stigma domains were positively associated with disclosure concerns and PHQ-8 scores. Long COVID patients experienced internalized and anticipated stigma more frequently than enacted stigma.

According to the first estimate, the predicted prevalence of experiencing overall, enacted, internalized, and anticipated long COVID stigma at least ‘sometimes’ were 95.0%, 63%, 86%, and 91%, respectively. Based on the second estimate, the overall prevalence of experiencing stigma was 76%, and those experiencing enacted, internalized, and anticipated stigma ‘always/often’ were 25.0%, 60.0%, and 59.0%, respectively.  For all stigma domains using both estimates, prevalence rates were higher among individuals clinically diagnosed with long COVID.

Overall, the study findings described the development and validation of the first (to the best of authors’ knowledge) psychometric scale for long COVID stigma quantification, capturing three key domains, i.e., enacted, anticipated and internalized stigma. The findings highlighted multilayered and widespread stigmas experienced by long COVID patients residing in the UK that must be considered during policy-making and clinical practice.

Written by

Pooja Toshniwal Paharia

Dr. based clinical-radiological diagnosis and management of oral lesions and conditions and associated maxillofacial disorders.