Mpox epidemiology, barriers to treatment and prevention, and perceived stigma: a cross-sectional study

Abstract

Background

The 2022 mpox outbreak in the United States primarily affected sexual minority men. Barrier to healthcare access, treatment, and vaccination against mpox are not well characterized. Stigma surrounding mpox has not been well quantified, and may significantly impede outbreak containment, compounding the public health challenges faced by marginalized populations.

Objective

This study aimed to assess the epidemiology of mpox in the U.S., explore barriers to treatment and vaccination, and evaluate stigma and its impact on individuals diagnosed with or at risk for acquiring mpox.

Methods

This cross-sectional You & Me Healthy Registry sub-study used multifaceted recruitment strategies including targeted recruitment through LGBTQ+-oriented app platforms. Eligible participants, including those who previously had mpox and those self-identified as at risk, with no prior mpox, completed an online survey of demographics, healthcare access, treatment, and vaccination behaviors, and mpox-related stigma. Stigma was measured using an adapted 12-item version of the HIV Stigma Scale. Descriptive statistical analyses and Chi-square comparisons of vaccination behaviors and stigma responses between those who previously had mpox and those at risk were conducted.

Results

Among 122 participants, 27 previously had mpox (22%). Participants were predominantly male (82%) and identified as gay (90%). The key barrier to treatment in those with confirmed mpox diagnosis was not being offered treatment (57%). Key barriers to vaccination included limited access to vaccines (30%) and stigma (14%). Stigma was pervasive, with 49% believing others would avoid them due to mpox and 43% expressing concerns about being perceived as “dirty.” Overall, the highest rated stigma subscale score was for concerns about public attitudes subscale, with a median score 9 out of 12, [Q1 8, Q3 10]). Those who previously had mpox reported higher stigma levels compared to at-risk individuals, particularly within the stigma domains of disclosure concerns (“telling someone I have mpox is risky” median score of 3 [Q1 2, Q3 4] for those who previously had mpox vs. 2 [2, 2] for those at risk, with no prior mpox; p = 0.0002), and a trend towards higher stigma for the subscale evaluating concerns about public attitudes (p = 0.071).

Conclusion

Stigma surrounding mpox exacerbates healthcare disparities and may influence preventive behaviors. Public health efforts should prioritize stigma-reduction strategies, culturally competent care, and targeted community engagement to improve outcomes in persons with mpox and similar infectious disease outbreaks.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12889-025-24416-2.

Introduction

Mpox, formerly known as monkeypox, is an orthopoxvirus causing an infectious disease that gained significant global attention during the 2022 outbreak in the United States when clade II first spread beyond Western Africa. The transmission of mpox primarily occurred through close contact, including sexual contact, with many cases initially affecting sexual and gender minority (SGM) individuals, predominantly sexual minority men (SMM) [1]. While the epidemiological and clinical aspects of mpox were central to public health responses, there were also significant social implications, particularly stigma toward those with previous mpox or at risk for mpox [2].

Stigma surrounding infectious diseases such as mpox can present a significant public health concern by impeding healthcare-seeking behavior in vulnerable populations, exacerbating negative psychosocial impacts, and undermining outbreak responses. Studies from other infectious disease outbreaks, such as HIV, have shown that stigma can deter individuals from seeking testing, vaccination, or treatment [3–7], while also fostering fear, discrimination, and social isolation [8]. Since the global mpox outbreak in 2022 disproportionately impacted SMM, stigmatization of the SMM community was heightened [9–11]. Messages framing SMM as “risky” and prioritizing vaccinations for men with multiple sex partners perpetuated homophobic attitudes, and led at risk communities to avoid testing and vaccination for fear of being labeled as gay. Given the associations between mpox spread and the SMM community during the global 2022 outbreak, stigmatization of the SMM community may be heightened due to pre-existing biases, leading to more profound public health consequences. Validated measurement tools to quantify the perceptions of stigma associated with mpox among at-risk populations are lacking; while one such measurement tool was recently developed, it requires further validation in the population most affected by mpox to be more broadly generalizable [12].

Here, we aimed to understand the experiences of stigma by individuals with prior mpox infection and those who identify as at risk for mpox. We suspected that experiences of stigma might be associated with several aspects of mpox epidemiology, including exposures and sexual behaviors, access to treatment and barriers to treatment, and barriers to vaccination. Understanding stigma-related barriers to treatment and epidemiology related factors can inform public health messaging and vaccination efforts; and quantifying perceived and experiences of stigma can inform the development of future validated measures of mpox-related stigma.

Methods

Study design

We developed and administered a cross-sectional survey to assess the epidemiology, experiences of stigma, healthcare access, and vaccination behaviors among individuals impacted by the 2022 mpox outbreak.

Participant eligibility

The mpox study was conducted as a part of the You and Me Healthy (YMH) Registry. The YMH registry is a direct-to-participant research registry coordinated by the Duke Clinical Research Institute that aims to connect participants, community members, and clinicians to address current public health concerns [13, 14]. Participants first consented to participation in the YMH registry, then subsequently were able to enroll in the mpox study. Participants were eligible for the mpox study if they met one of the following criteria: were enrolled in the YMH registry, previously had mpox (either confirmed by a healthcare provider or suspected), or self-identified as being at risk for mpox. Criteria for being at risk for mpox were those stated by the Centers for Disease Control and Prevention (CDC) at the time of the study, and included gay and bisexual individuals, men who have sex with men (MSM), and those with close, personal contact with someone with mpox [15]. Exclusion criteria included age < 18 years. Participants self-reported their eligibility during completion of the eConsent, and medical records confirming prior diagnoses of mpox were not obtained as part of the study.

Recruitment

The mpox study used community-engaged methods to develop the study in collaboration with community partners who are engaged in the care of or advocacy for communities that are at risk for mpox. Initially, the study team was focused geographically on Chicago, as one of only 6 cities with more than 1000 cases early in the outbreak, and particularly a city with strong community-engaged response to the mpox outbreak. The study team regularly consulted with LGBTQ + health advocates, researchers, and clinicians in the Chicago area, including individuals from the Chicago Department of Public Health, Cook County Health, Howard Brown Health, Lurie Children’s Hospital, and Northwestern Medicine. Through meetings and focus groups, the study team developed appropriate recruitment strategies and data collection tools, in partnership with the local academic and community partners who informed the questionnaire data collected, graphics and wording used in flyers and other marketing materials, and recruitment strategies. During focus group discussions, community partners suggested that the study team purchase ads on dating apps that targeted the LGBTQ + population as a method to reach the intended communities. An advertisement campaign was developed that geotargeted individuals across the U.S. to reach users aged 18 and older, with an emphasis on SMM, including Grindr, Adam4Adam, and Sniffies. Additionally, ads for the study were purchased for Instagram and other websites (Display ads). The campaign and advertisements were co-developed with community partners to ensure relevance and sensitivity to the study population (Supplemental Fig. 1).

Ultimately, participants were recruited in one or more of three ways: (1) through a targeted advertising campaign on social media platforms and SMM-oriented apps; (2) flyers produced for email or physical distribution via organizations affiliated with the community partners in the Chicago area; and (3) quarterly communications sent to previously registered YMH Registry participants to invite eligible participants to partake in the mpox study. Study recruitment was conducted between July 13 and November 6th, 2023. Participants who completed the surveys were compensated for their participation, in the form of a $25 electronic gift card delivered to their email.

Data collection and measures

Data were collected through an online survey questionnaire presented to eligible participants in either English or Spanish. The survey included questions on epidemiological, social, and behavioral aspects of mpox. Epidemiologic information included demographics, sexual behavior, symptoms of mpox (presented to those who reported prior mpox infection), and contact history. Stigma-related questions were formatted in a 12-item scale measuring stigma across four domains: public attitudes, disclosure concerns, self-image, and personalized stigma. Survey questions related to treatments addressed barriers to treatment, including access and uptake of medications such as Tecovirimat (TPOXX), and were presented only to those who reported a prior mpox infection. Survey items related to vaccination included vaccine access, vaccination behaviors, and barriers or reasons for vaccine hesitancy. With the exception of the 12-item stigma scale, the contents of the questionnaire were developed originally by the study team for use in this study. The questionnaires are in Supplementary Table 1.

In the absence of any validated surveys to assess stigma specific to mpox, a stigma survey was adapted with input from community partners from a 12-item short HIV stigma scale by Reinius, et al., [16] a shortened version of the Berger, et al. HIV Stigma Scale [17]. This scale was developed to rigorously measure four categories of stigma associated with HIV diagnosis, including personalized stigma, disclosure concerns, concerns with public attitudes and negative self-image. For the current study, statements were revised to replace HIV with mpox; for example, the statement “Telling someone I have HIV is risky” was adapted to “Telling someone I have mpox is risky”. The adapted stigma scale questions are in Supplemental Fig. 2. Respondents who reported previously having mpox were asked about their perceptions of stigma associated with their mpox diagnosis, while respondents who self-identified as at-risk, with no prior mpox, were asked to reflect on their perceptions of stigma in the hypothetical situation that they did acquire an mpox infection. Responses to each item were on a four-point Likert scale ranging from “strongly disagree” to “strongly agree”.

Statistical analysis

We conducted descriptive statistics of the participant demographics, clinical symptoms, treatment data and barriers to treatment, and vaccination status and barriers. We compared vaccination behaviors between participants who previously had mpox (confirmed or suspected) and those at risk, without prior mpox, using Pearson chi-square test or Fisher exact test, as appropriate. We used chi-square rank based tests to compare stigma survey results by mpox status. Additionally, we evaluated vaccination behaviors by US Census region. Finally, we evaluated the internal validity of the adapted stigma scale by calculating an estimate of Cronbach’s α with a corresponding 95% confidence interval for each of the four stigma category subscales, and the overall scale [18]. A Cronbach’s α estimate ≥ 0.7 was considered acceptable internal consistency. All analyses werei conducted using SAS version 9.4 (Cary, NC). The mpox substudy of the YMH Registry was approved by the Institutional Review Board at Duke University, under Pro00112104.

Results

Participant demographics

A total of 266 potential participants completed the screener survey for the mpox study and were eligible for the study: 62 identified as having previously had mpox (either confirmed or presumed), and 204 self-identified as at-risk for acquiring mpox with no known prior infection. Ultimately, 122 eligible participants completed the online survey questionnaire (n = 122/266, conversion rate: 46%, Table 1); of those, 27 participants previously had mpox, while the remainder reported being at risk, with no prior mpox. The mean age was 43.7 years (standard deviation: 12.6 years). Participants were from 30 states in the US and 2 Canadian territories. The South and West regions were most frequently represented, with 40 (33%) and 33 (27%) participants, respectively (Table 1). Most participants identified as men (n = 100, 82%), and as gay or lesbian (n = 110, 90%). Most participants were white (n = 77, 63%), with 14% reporting Black or African American race (n = 17); 16% reported Hispanic ethnicity (n = 20). Nearly half of the participants (n = 49, 43%) were living with HIV, with the majority of those (n = 43, 88%) reporting an undetectable viral load.

Table 1.

Demographic characteristics of participants who previously had Mpox or were at risk for acquiring Mpox (n = 122)

Characteristic	Total (n=122)	Previously had mpox (n=27)	At risk, no prior mpox (n=95)
Median Age [Q1, Q3], years	42 (34, 52)	41 (36, 49)	43 (33, 54)
Gender identity
Man	100 (82%)	20 (74%)	80 (84%)
Woman	1 (1%)	0 (0%)	1 (1%)
Non-binary	4 (3%)	1 (4%)	3 (3%)
Genderqueer	2 (2%)	0 (0%)	2 (2%)
Missing	18 (15%)	6 (22%)	12 (13%)
US Census Regiona
Northeast	10 (8%)	2 (7%)	8 (8%)
Midwest	14 (11%)	1 (4%)	13 (14%)
South	40 (33%)	7 (26%)	33 (35%)
West	33 (27%)	11 (41%)	22 (23%)
Missing or non-US Census Region	25 (20%)	6 (22%)	19 (20%)
Race
American Indian or Alaska Native	2 (2%)	0 (0%)	2 (2%)
Asian (including South Asian and Asian Indian)	4 (3%)	0 (0%)	4 (4%)
Black or African American	17 (14%)	5 (19%)	12 (13%)
White	77 (63%)	14 (52%)	63 (66%)
Other	4 (3%)	2 (7%)	2 (2%)
Missing	18 (15%)	6 (22%)	12 (13%)
Hispanic ethnicity	20 (16%)	7 (26%)	13 (14%)
Missing	18 (15%)	6 (22%)	12 (13%)
Sexual orientationb
Asexual	2 (2%)	0 (0%)	2 (2%)
Heterosexual	1 (1%)	0 (0%)	1 (1%)
Gay or lesbian	110 (90%)	23 (85%)	87 (92%)
Bisexual	19 (16%)	6 (22%)	13 (14%)
Queer	7 (6%)	2 (7%)	5 (5%)
Questioning	1 (1%)	1 (4%)	0 (0%)
Not listed	0 (0%)	0 (0%)	0 (0%)
Due to the MPOX outbreak, did you change any sexual behaviorsb
Yes, reduced number of partners	45 (38%)	13 (48%)	32 (34%)
Yes, had fewer one-time sexual encounters	38 (32%)	10 (37%)	28 (30%)
Yes, had sex with less people from dating apps	29 (24%)	7 (26%)	22 (24%)
Yes, had sex with less people from sex venues	11 (9%)	3 (11%)	8 (9%)
No, did not change sexual behaviors	57 (48%)	8 (30%)	4 (53%)
Person living with HIV	49 (43%)	15 (71%)	32 (37%)

^aUS Census region was derived from reported zip codes, which were non-missing for 97 of 122 total survey respondents. Of the total respondents, 5 respondents reported only a 4-digit zip code, which we imputed to missing, and 2 respondents had Canadian zip codes

^bMore than one choice could be selected

Sexual activity and Mpox concerns

Most participants had been sexually active within the past six months (113/117 respondents, 97%), with sexual partners being cisgender men (118/122, 97%), non-binary (18/122, 15%), transgender men (9/122, 7%), and/or cisgender women (4/122, 7%). Most commonly, participants reported having 2–5 partners in the last 6 months (43/120 respondents, 36%), but 22% of the cohort reported more than 20 partners in the last 6 months (26/120). Half of the participants at risk with no prior mpox (47/95, 50%) reported concern about acquiring mpox, and over half of all participants (63/120, 53%) reported having changed their sexual behaviors in response to the outbreak, such as reducing the number of sex partners or avoiding one-time sexual encounters.

Diagnosis, treatment, and vaccination

Among the participants with previous mpox (n = 27), the most common symptoms of mpox were rash (n = 17, 65%) and fatigue (n = 17, 65%; Table 2). About half (n = 14, 44%) of these participants reported close contact with someone who had mpox prior to developing symptoms. Less than two-thirds of individuals with confirmed diagnosis of mpox were offered treatment (12/21, 57%), though most individuals who were offered treatment accepted it (11/12, 92%), mostly commonly, tecovirimat (6/11, 55%). Two participants with suspected mpox sought diagnosis and treatment but were not tested. Among the 4 of 6 respondents with suspected mpox that did not seek out treatment, the most common reported barriers to treatment were concern about insurance (n = 2, 50%), uncertainty of where to present for care (n = 2, 50%), and concern about being judged or stigmatized (n = 2, 50%).

Table 2.

Epidemiology and symptomatic manifestations among participants who previously had Mpox (n = 27)

Characteristic	Total (n=27)d
Confirmed diagnosis	21 (78%)
Exposures and symptoms	n=27
Known exposure to mpox within 3 weeks of symptom onset
Yes	14 (52%)
No	1 (4%)
Unsure	12 (44%)
Location of exposure
Household	5/14 (36%)
Sexual contact at a social event	5/14 (36%)
Non-sexual contact at a small social event	1/14 (7%)
Othera	2/14 (14%)
Unknown	1/14 (7%)
Symptomsb
Skin rash	17 (65%)
Fatigue/tiredness	17 (65%)
Muscle pain	13 (50%)
Swollen lumps in neck, armpit, groin	13 (50%)
Rash in the anal or genital area	12 (46%)
Fever	10 (39%)
Chills or sweats	10 (39%)
Headache	10 (39%)
Diarrhea	10 (39%)
Pain/bleeding in the anal/genital area	6 (23%)
Sore throat	6 (23%)
Rash or lesions involving the mouth	5 (19%)
Eye redness or pain	3 (12%)
Cough or difficulty breathing	2 (8%)
Vomiting or nausea	1 (4%)
Concurrent infection at time of mpox diagnosis	4/21 (19%)
Treatment Details	n=21e
Treatment Status
Offered treatment for mpox	12/21 (57%)
Accepted treatment for mpox	11/12 (92%)
Treatment setting
Health department	1/11 (9%)
Primary care provider	5/11 (46%)
Urgent care	1/11 (9%)
Hospital admission	3/11 (27%)
Other	1/11 (9%)
What treatment did you receive
Tecovirimat (TPOXX)	6/11 (55%)
Brincidofovir (Tembexa)	1/11 (9%)
Cidofovir	1/11 (9%)
Medicine by mouth, unsure of name	2/11 (18%)

^aOne participant responded that partner informed them of infection; one participant responded that exposure was through sexual contact at a private setting

^bMore than one could be selected

^cConcurrent infections included one participant each reporting Chlamydia, Gonorrhea, or Mycoplasma genitalium infection, and one participant who reported concurrent infection but could not remember which infection

^dDenominator is 27 unless otherwise noted

^eDenominator includes those who were diagnosed with mpox

Vaccination rates were moderate at the time the study was conducted (Table 3), with 51% of participants (n = 62) reporting that they had been vaccinated, most of whom received two doses of vaccine (52/62, 84%). Vaccination rates were higher among individuals at risk, with no prior mpox (55/95, 58%) compared to those who previously had mpox (n = 7/27, 26% ; Chi-square p-value 0.01). The most frequent location for vaccine administration was the health department (33/62, 53%), and respondents reported hearing about vaccines most commonly via social media (25/62, 40%), through community organizations (20/62, 32%), or from their doctor or other healthcare provider (18/62, 29%); these did not significantly by mpox status. Among those who were not vaccinated (n = 56), the most frequently reported barriers included being unable to find a vaccine (n = 17, 30%), uncomfortable getting vaccinated (n = 12, 21%), prior infection (n = 11, 20%), and discomfort with vaccine locations (n = 8, 14%). Other notable reasons in free text responses could be categorized into the following themes: lack of primary care appointment or insurance (n = 6), already infected or prior smallpox vaccine (n = 5), vaccine not offered by primary care or health department (n = 3), not enough information or mistrust of vaccine safety or effectiveness (n = 2), too busy to find time (n = 2), and stigma concerns (n = 2), including one respondent who reported that the vaccine was offered at their place of employment, but they did not want to be seen receiving the vaccine.

Table 3.

Vaccination behaviors and barriers to Mpox vaccination

Characteristic	Total (n = 122)	Previously had mpox (n = 27)	At risk, no prior mpox (n = 95)	p-value
Vaccination status				0.01
Vaccinated	62 (51%)	7 (26%)	55 (58%)
Not vaccinated	56 (46%)	19 (70%)	37 (38%)
Not sure	4 (3%)	1 (4%)	3 (3%)
Doses received				0.01
One	9/62 (15%)	2/7 (29%)	7/55 (13%)
Two	52/62 (84%)	4/7 (57%)	48/55 (87%)
Three	1/62 (2%)	1/7 (14%)	0/55 (0%)
Vaccination location				0.85
Health department	33/62 (53%)	3/7 (43%)	30/55 (55%)
Doctors’ office	19/62 (31%)	3/7 (43%)	16/55 (29%)
Community organization	8/62 (13%)	1/7 (14%)	0/55 (0%)
None of the above	2/62 (3%)	0/7 (0%)	2/55 (4%)
Participants learned about the vaccine from
Doctor or health care provider	18/62 (29%)	4/7 (57%)	14/55 (26%)	0.08
Flyer or posters	12/62	3/7 (43%)	9/55 (16%)	0.09
Social media	25/62 (40%)	2/7 (29%)	23/55 (42%)	0.51
Radio	4/62 (7%)	1/7 (14%)	3/55 (6%)	0.37
Community organization	20/62 (32%)	1/7 (14%)	19/55 (35%)	0.28
Friend or sexual partner	15/62 (24%)	1/7 (14%)	14/55 (26%)	0.52
Othera	9/62 (15%)	1/7 (14%)	8/55 (15%)	0.43
Reasons for unvaccinated statusb
Infected prior to vaccines	11/56 (20%)	11/19 (60%)	0/37 (0%)	< 0.0001
Unable to find a vaccine	17/56 (30%)	2/19 (11%)	15/37 (41%)	0.02
Not comfortable getting vaccinated	12/56 (21%)	4/19 (21%)	8/37 (22%)	0.96
Uncomfortable with vaccine location	8/56 (14%)	3/19 (16%)	5/37 (14%)	0.82
Access/disability issues	5/56 (9%)	2/19 (11%)	3/37 (8%)	0.77
Lack of internet access to schedule appointment	3/56 (5%)	0/19 (0%)	3/37 (8%)	0.21

^aOther locations included: six respondents reporting hearing about the vaccine on a TV advertisement or news segment, three from internet searches, and one from the local department of health advertisement

^bAs separate selections were made for each possible option, and multiple choices could be selected, a chi-sq test was performed for each potential reason

Vaccination behaviors were evaluated by US Census region. All participants in the Northeast US were vaccinated against mpox at the time of response (n = 10, 100%), while approximately half of participants in the other US regions were vaccinated (Midwest: n = 7, 50%; South: n = 22, 55%; West: n = 14, 42%; p = 0.10). The reported reasons for unvaccinated status did not differ statistically by geographic region, and place of vaccination did not statistically differ by region, with doctors’ office/ health clinic and health departments being the most common location for vaccine administration.

Table 4.

Internal consistency of the adapted Mpox stigma scale (Cronbach’s α)

Scale	Number of items	Cronbach’s a (95% CI)
Personalized stigma	3	0.44 (0.25, 0.59)
Disclosure concerns	3	0.77 (0.69, 0.83)
Concerns about public attitudes	3	0.79 (0.72, 0.85)
Negative self-image	3	0.82 (0.75, 0.87)
Overall Mpox Stigma Scale	12	0.86 (0.82, 0.89)

Stigma and perceptions of Mpox

Respondents expressed significant concerns about mpox-related stigma. Nearly half (n = 59, 48.8%) of respondents strongly agreed that people would avoid touching them if they knew they had mpox, while 60% (n = 73) agreed or strongly agreed that they would work hard to keep their mpox status a secret. Additionally, 66% (n = 81) of participants agreed or strongly agreed that people with mpox are treated like outcasts and that most people believe a person with mpox is “dirty”; 90% (n = 110) believed most people are uncomfortable around someone with mpox; and 49% (n = 59) expressed feelings of guilt associated with having mpox. The subscale with the highest, or worst, perceived stigma score across all respondents was the Concerns about public attitudes subscale, with a median score 9 out of 12, [Q1 8, Q3 10]). The subscales of Personalized stigma, Disclosure concerns, and Negative self-image had median scores of 8 out of 12.

A comparison of the perceived stigma by mpox status, is shown in Fig. 1; visually, the cohort who previously had mpox rated higher degrees of perceived stigma for the Disclosure concerns and Concerns about public attitudes subscales than those at risk, with no prior mpox. Specifically, those who previously had mpox trended towards higher subscale scores for Concerns about public attitudes (median 10 [Q1 9, Q3 12]) than those at risk with no prior mpox (median 9 [Q1 7, Q3 10]; p = 0.071), and a higher score for the statement “telling someone I have mpox is risky” (median 3 [Q1 2, Q3 4]) than those at risk (2 [2, 2]; p = 0.0002). Conversely, those at risk with no prior mpox perceived personalized stigma to be higher than those who previously had mpox (median Personalized stigma subscale score [Q1, Q3] 6 [5, 8], previously had mpox cohort vs. 8 [7, 9], at risk cohort; p = 0.0005).

Fig. 1.

12-item Mpox stigma survey. The mpox stigma survey was adapted from the Reisner, et al. short version of the HIV Stigma Scale. Four subscales of stigma were evaluated, personalized stigma, disclosure concerns, concerns about public attitudes, and negative self-image. Each item was rated on a four-point Likert scale from Strongly Disagree (1) to Strongly Agree (4). Results are shown by mpox status (previously had mpox [n = 27], versus at risk, no prior mpox [n = 95]). The adapted mpox stigma scale showed overall good internal consistency, with a Cronbach’s α of 0.86 (95% confidence interval: 0.82, 0.89, Table 4). The personalized stigma subscale had low internal consistency (α = 0.44, 95% confidence interval 0.25, 0.59), but the other subscales were above a reasonably acceptable α value of 0.7

Discussion

In this cross-sectional, internet-based study informed jointly by academic and community partners, we leveraged patient recruitment methods using dating apps intended for the LGBTQ + population to examine the epidemiology, exposure history and sexual behaviors, treatment seeking behaviors, vaccination behaviors, and experiences and perceptions of stigma among individuals impacted by the 2022 mpox outbreak. Participants were primarily reflective of the population most vulnerable to infection during the 2022 outbreak, namely SMM, and nearly half were people living with HIV (PLWH). Symptoms described were consistent with known manifestations of mpox disease, and sexual behaviors were frequently changed in light of the mpox outbreak. Of those with prior confirmed diagnosis of mpox, just over half were offered treatment, indicating a potential for improvement in access to treatment. Though limited by sample size, respondents who had a suspected but unconfirmed mpox infection reported fear of stigmatization as a reason for not seeking out a diagnosis. At the time of the study, half of respondents had been vaccinated; prior infection and inability to find a vaccine were the most common reasons for unvaccinated status. The adapted stigma scale revealed significant concerns about stigma across multiple domains. Nearly half of the participants expressed concerns about being treated as outcasts or being viewed negatively due to their mpox status. As with previous outbreaks of infectious diseases like HIV, stigma may be a major barrier to healthcare-seeking behavior in mpox and may result in a psychological burden of infectious diseases, particularly among marginalized populations.

Our study highlighted barriers to both mpox treatment and vaccination access. Reported vaccination rates in our study were consistent, or slightly higher, than those reported across the United States at the time of the study. In April 2024, the CDC estimated 39% of individuals at risk of mpox had received one dose of the JYNNEOS vaccine and 25% had received two doses [19]. Although cases have continued to decrease, preventative measures including vaccination of at risk communities play an important role in minimizing ongoing and future transmission of mpox [20]. Stigma and prior experiences of structural discrimination may also play a role in vaccination-seeking behaviors, treatment-seeking, or treatment acceptability. Prior literature demonstrates that internalized stigma and fear of discrimination based on sexual orientation may lead SMM individuals to not disclose their sexual identity and/or behavior to healthcare providers [21, 22]. Nondisclosures or concern about disclosure may influence healthcare seeking behaviors and whether providers offer treatment or vaccination for vulnerable patients. A large internet-based survey of SMM participants in Brazil examined mpox-related stigma and knowledge. Although mpox awareness and willingness to get vaccinated were both above 90%, 84% of respondents agreed that LGBTQ + individuals are being discriminated and stigmatized due to mpox [23]. In our study, participants cited difficulty accessing vaccines and discomfort with vaccination sites as reasons for not being vaccinated, and at least two respondents stated stigma was a reason for being unvaccinated. Careful public health messaging regarding vaccination and treatment that minimizes stigma is critical to avoid deterring individuals from engaging in preventive measures and treatment seeking behaviors.

Significant levels of stigma were experienced or perceived by those who previously had mpox and those at-risk with no prior mpox, respectively. Recruitment methods were intentionally developed to identify participants reflective of the communities most vulnerable to the mpox outbreak in the US in 2022. We chose to start with a validated HIV-stigma scale given the overlaps in the current epidemiology and affected populations; although imperfect, no validated stigma scale for mpox had been developed at the time of the study. In two Maryland based clinics, the HIV Stigma Scale was similarly adapted to an mpox stigma survey [24]. Of 24 respondents, higher stigma scores were seen in the public attitudes and disclosure concerns, while negative-self-image and personalized stigma domains had lower stigma scores. These findings are consistent with our study and suggest the need for stigma-reduction strategies within public health campaigns. Messages that emphasize empathy, community support, and the importance of prevention without judgment may help reduce the stigma surrounding mpox and increase both vaccine uptake and healthcare utilization. Further, healthcare providers must be trained to deliver culturally competent care that recognizes the unique stigma experienced by individuals at risk for or diagnosed with mpox. Intervention mapping has been utilized in the Netherlands to promote vaccine uptake for those at risk of mpox exposure and select communication methods [25]. This theoretical framework guided the selection of communication strategies, structural interventions, and reinforcing positive social norm towards vaccination. The framework provided a holistic approach to addressing stigma and vaccine hesitancy for those vulnerable to mpox and incorporated community input. Although, evaluation of this model’s effectiveness in the context of the mpox still needs to be completed, it provides a framework to develop theory and evidence informed messages for vaccine uptake in an infectious disease outbreak.

Limitations

This study has several limitations. First, the use of self-reported data may introduce social desirability bias, particularly in responses related to stigma and sexual behavior. Second, the study sample may not be fully representative of the broader population, as recruitment was largely limited to individuals using LGBTQ+-oriented platforms, and those that respond to a survey about mpox may not have the same general perceptions around treatment, vaccination, and behaviors related to mpox as the broader affected or vulnerable population. Particularly, use of sex-seeking apps and websites like Grindr and Sniffies might have led to recruiting highly sexually active participants, which could affect representativeness. The conversion rate from completion of the eligibility screener to returning to complete the mpox surveys was 46%, likely related to a delay in the delivery of the survey by email. Future internet-based studies could improve upon this approach to improve completion rates. Fourth, the cross-sectional design limits causal interpretations of the relationship between stigma and healthcare behaviors. Lastly, we used an adapted version of the HIV Stigma Scale as there were no validated tools to quantify stigma in context of mpox. The adapted survey overall performed well in terms of internal consistency, but would benefit from further refinement, particularly of the personalized stigma subscale. Since completion of this study at least one mpox stigma scale has been developed and validated in a Black, predominantly female population in the Southern US; this scale still requires validation across other populations including men and SMM, and across other geographical locations [12].

Conclusion

Stigma surrounding mpox, particularly within marginalized communities, plays a significant role in shaping healthcare-seeking behavior and access to preventive measures like vaccination. Addressing these barriers through stigma reduction strategies, culturally competent care, and targeted public health interventions will be crucial in managing the ongoing mpox outbreak and future public health crises.

Supplementary Information

Below is the link to the electronic supplementary material.

Author contributions

AEB and PS designed the study, analyzed and interpreted the data, co-drafted the first version of the manuscript and substantively revised it. AC was a major contributor in writing and revising the manuscript. PAG contributed to the design of the work, lead project administration and execution, and substantially revised the manuscript. DT conducted data analysis and substantially revised the manuscript. EMDA and CH conceptualized the project and substantially revised the manuscript. GP contributed to designing the study, identifying community partnerships, interpreting the data, and substantively revised the manuscript. All authors read and approved the final manuscript.

Funding

Funded through the RADx-UP Coordinating and Data Collection Center and NIH emergency cooperative agreement (1U24MD016258), the You & Me Health Registry is being developed as an online community of people from across the United States working together to improve public health. Through a direct-to-participant design, we propose to use this registry as a platform to create a nationally accessible study for patients diagnosed with mpox and their close contacts.

Data availability

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

The mpox substudy of the YMH Registry was conducted in accordance with the Declaration of Helsinki, and approved by the Institutional Review Board at Duke University, protocol #Pro00112104. Eligible potential participants completed an electronic informed consent prior to participation in the study.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.