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PURPOSE: Transgender and gender-diverse (TGD) people may have been disproportionately impacted by the COVID-19 pandemic, yet little is known about vaccination status in this population. This multicenter cohort study of insured adults examined the rates of COVID-19 vaccine initiation and completion in TGD persons compared to matched cisgender persons. METHODS: A cohort of TGD persons and matched cisgender persons enrolled in Kaiser Permanente health plans in Northern and Southern California between 12/1/2020 and 7/31/2021 were analyzed. COVID-19 vaccination initiation and completion rates were compared across groups using Cox regression models. RESULTS: Among transmasculine persons, the HR (95 % CI) estimates for COVID-19 vaccination initiation and completion were, respectively, 1.35 (1.30-1.40) and 1.78 (1.71-1.85) compared with cisgender women and 1.34 (1.29-1.40) and 1.81 (1.73-1.88) compared with cisgender men. Among transfeminine persons, the corresponding HRs (95 % CIs) for vaccination initiation and completion were 1.35 (1.30-1.40) and 1.78 (1.71-1.85) compared with cisgender women and 1.34 (1.29-1.40) and 1.81 (1.73-1.88) compared with cisgender men. CONCLUSION: Findings from this cohort of insured adults demonstrated that TGD persons initiated and completed COVID-19 vaccination at higher rates compared to matched cisgender persons. Further work is needed to understand vaccination rates and determinants in the broader TGD populations.
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Importance: Despite the US Food and Drug Administration's approval of adalimumab for the treatment of hidradenitis suppurativa (HS), prescription rates remain low, indicating a critical gap between evidence-based guidelines and clinical practice. Understanding the medical decision-making process that these patients use when considering biologic agents and other HS therapies may uncover opportunities for improved patient-physician communication and HS disease control. Objective: To elucidate factors that affect the medical decision-making process for patients with HS, with an emphasis on biologic therapies. Design, Setting, and Participants: Open-ended semistructured interviews were conducted with English-speaking adults with HS (aged ≥18 years) recruited from 2 dermatology clinics that are part of Emory University School of Medicine in Atlanta, Georgia. All participants had an average 7-day pain score of 1 or higher on a 0- to 10-point numeric rating scale. Surveys were conducted between November 2019 and March 2020, and data were analyzed from December 2021 to August 2022. Data collection continued until thematic saturation was reached at 21 interviews. Results: A total of 21 participants (median [IQR] age, 38.5 [27.9-43.4] years; 16 females [76%]) were included in the analysis. Almost all participants (96%) had Hurley stage II or III disease, and 15 (71%) had a history of adalimumab use. Suffering threshold, perceptions of treatment risk, treatment fatigue, disease understanding, and sources of information (included dermatologists, the internet, advertisements, and friends and loved ones) were identified as factors affecting participants' decisions to initiate new treatments for HS. Conclusions and Relevance: Results of this qualitative study suggest that mitigating misconceptions about treatment risk, identifying gaps in disease knowledge, and emphasizing early treatment to prevent scarring and disease progression may empower patients with HS to engage in treatment planning and to try new therapies.
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Hidradenitis Supurativa , Adulto , Femenino , Humanos , Adolescente , Hidradenitis Supurativa/tratamiento farmacológico , Adalimumab/uso terapéutico , Índice de Severidad de la Enfermedad , Progresión de la Enfermedad , Selección de PacienteRESUMEN
Importance: While acne is common in transgender and gender-diverse people and is associated with gender-affirming hormone therapy, little research has examined these factors and their impact in gender minority groups. Objective: To examine the lived experiences of acne and acne treatment in transgender and gender-diverse participants. Design, Setting, and Participants: This mixed-methods analysis was conducted at a multidisciplinary gender center at a public safety-net hospital and endocrinology and dermatology clinics at a tertiary academic center from January 4, 2021, to April 7, 2022, using semistructured interviews and surveys. Participants were transgender or gender-diverse adults who had received gender-affirming hormone therapy. Data analysis was performed from November 11, 2021, to March 31, 2023. Exposure: Current diagnosis of acne. Main Outcomes and Measures: Interviews exploring the experience of acne and acne treatment were audio recorded, transcribed verbatim, coded using minority stress theory and the socioecological model, and analyzed using thematic analysis. Themes were triangulated with survey data on gender, self-reported acne severity, skin-specific quality-of-life impact, and treatment experience. Results: A total of 32 participants were included in the study (mean [range] age, 32 [18-57] years; 17 transgender men, 11 transgender women, and 4 nonbinary participants). Ten participants (31%) self-rated their skin as currently clear or almost clear, 11 (34%) reported mild acne, and 11 (34%) had moderate to severe acne. Participants described experiences of rejection and bullying related to acne and admitted avoiding social interactions in which they anticipated acne-related discrimination, which led to feelings of depression and anxiety. Acne worsened body appearance dissatisfaction. Transgender women reported acne interfering with feminine gender expression. Transgender men often normalized acne development, sometimes viewing acne positively as an early sign of testosterone action. Most participants tried over-the-counter acne treatments and commonly sought acne treatment advice from physicians, peers, online forums, and social media. Barriers to acne treatments included cost, lack of multidisciplinary care, mistrust toward the health care system, and lack of transgender-specific acne care education. Conclusions and Relevance: In this mixed-methods study, transgender and gender-diverse individuals reported experiencing acne-related stigma and facing barriers to acne treatment. Multilevel changes, such as developing strategies to reduce acne stigma, providing transgender-specific acne care education, facilitating multidisciplinary acne care, and expanding transgender-friendly clinical environments, are recommended to reduce the impact of acne in transgender individuals.
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Acné Vulgar , Minorías Sexuales y de Género , Personas Transgénero , Adulto , Masculino , Humanos , Femenino , Identidad de Género , Acné Vulgar/tratamiento farmacológico , TestosteronaRESUMEN
BACKGROUND: Pain and itch are impactful and burdensome symptoms of hidradenitis suppurativa (HS). Elucidating factors associated with pain and itch severity may identify groups disproportionally affected by HS-related pain and itch and further our understanding of how pain and itch impact quality of life (QoL) in patients with HS. OBJECTIVE: The objective of the study was to determine factors associated with pain severity, itch severity, and reduced QoL in patients with HS. METHODS: This is a retrospective cross-sectional study of 257 adults with HS who received care in an HS Specialty Clinic from January 2019 to August 2021. Multivariable mixed-effects linear regression was used to determine the relationships between clinical and demographic patient factors and the outcomes of pain severity, itch severity, and skin-specific QoL. RESULTS: Factors associated with reduced QoL were Hurley stage II (ß = 19.66, 95% CI: 1.40-37.93) and III (ß = 21.98, 95% CI: 1.57-42.39) disease as well as severity of pain (ß = 13.74, 95% CI: 11.93-15.55), itch (ß = 4.57, 95% CI: 2.59-6.55), anxiety (ß = 2.55 95% CI: 1.29-3.81), and depression (ß = 1.43, 95% CI: 0.30-2.56). Increasing HS pain severity was associated with Hurley stage III disease (ß = 2.04, 95% Cl: 0.99-3.09), black race (ß = 1.23, 95% Cl: 0.40, 2.06), depression severity (ß = 0.08, 95% Cl: 0.02, 0.14), and anxiety severity (ß = 0.10 95% Cl: 0.04, 0.17). Factors associated with HS itch severity were Hurley stage III disease (ß = 2.23, 95% Cl: 1.19, 3.27), black race (ß = 0.92, 95% Cl: 0.07, 1.78), depression severity (ß = 0.09, 95% Cl: 0.04, 0.14), and anxiety severity (ß = 0.07, 95% Cl: 0.01, 0.13). CONCLUSION: Pain is one of the largest contributors to QoL in patients with HS; on a 0-10 numeric rating scale, a 2-point increase in HS pain had a similar independent effect on QoL as having Hurley stage III disease compared to Hurley stage I.
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Hidradenitis Supurativa , Adulto , Humanos , Hidradenitis Supurativa/complicaciones , Hidradenitis Supurativa/diagnóstico , Estudios Retrospectivos , Calidad de Vida , Estudios Transversales , Índice de Severidad de la Enfermedad , Prurito/etiología , Dolor/etiologíaRESUMEN
Background: Patients with hidradenitis suppurativa (HS) experience high physical and emotional symptom burden and may benefit from palliative care interventions, though no studies have explored the unmet palliative care needs in this population. Objective: This case series aimed to qualitatively evaluate unmet needs and palliative care interventions among patients with HS who were referred to palliative care. Methods: We reviewed medical records of patients with HS who were referred from an HS specialty clinic and seen in an interprofessional palliative care ambulatory clinic. Palliative care notes were qualitatively analyzed inductively and deductively to identify themes characterizing unmet needs and palliative care interventions. Results: Thirteen patients with HS (median [IQR] age, 38 [31-45] years; 11 [85%] women; 11 [85%] Black) were referred and seen in a palliative care specialty clinic. Topics discussed included uncontrolled HS pain, housing insecurity, and emotional distress. Palliative care interventions included a thorough assessment of pain, multimodal pain management approaches, social worker weekly check-ins, and management of psychotropic medications. Limitations: Small study at a single tertiary center. Conclusions: Care models integrating palliative care approaches with multidisciplinary support services may reduce disease burden in a subset of patients with HS.
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BACKGROUND: Many transgender persons seek hormone therapy to reduce gender dysphoria and improve quality of life, but little is known about patient satisfaction with current gender-affirming hormone therapy. AIM: To examine patient satisfaction with current gender-affirming hormone therapy and patients' goals of additional hormone therapy. METHODS: Transgender adults in the validated multicenter STRONG cohort (Study of Transition, Outcomes, and Gender) were asked to complete a cross-sectional survey about current and planned hormone therapy and the effects that they experienced or hoped to gain. The proportion of respondents reporting overall satisfaction with hormone therapy were compared with χ2 or Fisher exact test. Cochran-Mantel-Haenszel analysis was used to compare the covariates of interest while controlling for age at the time of survey completion. OUTCOMES: Patient satisfaction across hormone therapies, each measured with a 5-point scale, was averaged and dichotomized. RESULTS: Out of 2136 eligible transgender adults, 696 (33%) completed the survey: 350 transfeminine (TF) and 346 transmasculine (TM) respondents. Most participants (80%) were satisfied or very satisfied with their current hormone therapies. TF participants and older participants were less likely to report being satisfied with their current hormone therapies than TM participants and younger participants, respectively. However, TM and TF categories were not associated with patient satisfaction after controlling for age at the time of survey completion. More TF persons planned to take additional treatment. The most frequent goals for additional hormone therapy for TF persons included breast size growth, feminine body fat distribution, and facial feature softening; for TM persons, goals included diminishing dysphoria, greater muscle mass, and masculine body fat distribution. CLINICAL IMPLICATIONS: Multidisciplinary care beyond provision of hormone therapy-such as involvement of surgical, dermatologic, reproductive health, mental health, and/or gender expression care-may be important to help achieve unmet gender-affirming care goals. STRENGTHS AND LIMITATIONS: This study had a modest response rate and included only respondents with private insurance, limiting generalizability. CONCLUSION: Understanding patient satisfaction and goals of care will assist shared decision making and counseling in patient-centered gender-affirming therapy.
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Personas Transgénero , Humanos , Adulto , Personas Transgénero/psicología , Calidad de Vida , Estudios Transversales , Objetivos , Hormonas , Satisfacción PersonalRESUMEN
BACKGROUND: Pain is rated by patients with hidradenitis suppurativa (HS) as the disease's most impactful symptom. HS therapies are often insufficient to control inflammatory disease activity and pain. A better understanding of patient experiences with pain may improve patient-provider relationships and help identify strategies for addressing HS pain. OBJECTIVES: This qualitative study sought to characterize lived pain experiences of those with HS. METHODS: English-speaking patients ≥ 18 years old with a dermatologist-confirmed diagnosis of HS and an average numerical rating scale pain score of ≥ 1 over the preceding week were recruited from a single academic medical centre in Atlanta, Georgia, USA. Semistructured interviews were conducted from November 2019 to March 2020 to explore participants' HS pain experiences and the subsequent impact on their lives. Thematic saturation was reached after interviewing 21 participants. Interviews were audio recorded, transcribed, and analysed using thematic analysis. RESULTS: Among 21 study participants, the median 7-day average pain score was 6 (interquartile range 3-7; scale ranges from 0 to 10, with 10 being most pain). Participants' descriptions of pain were consistent with nociceptive pain, neuropathic pain and itch. Pain impacted multiple life domains, including physical limitations (decreased mobility and impaired sleep), decreased psychological wellbeing (irritability, depression, loss of control, and difficulty communicating pain experiences) and impaired social relationships (social isolation, intimacy problems and difficulty fulfilling social responsibilities). Although participants reported chronic discomfort, acutely painful and unpredictable HS disease flares caused more distress and quality-of-life (QoL) burden. Participants frequently treated their pain without input from the medical team, sometimes with unsafe medication doses or combinations. Factors contributing to self-management of pain included difficulty accessing timely outpatient care during disease flares and fear of stigma from healthcare providers. CONCLUSIONS: When present, HS-related pain may impact not only physical wellbeing but also mental health and relationships. In addition to therapies that target the inflammatory disease burden, treating the symptom of pain may improve patients' QoL and wellbeing. Because patients with HS have difficulty explaining their pain, proactively asking them about pain may identify unmet needs, facilitate better pain control and improve QoL. Further, the influence of HS-related pain on numerous aspects of QoL suggests the need for multidisciplinary, patient-centred approaches to HS pain management.
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Hidradenitis Supurativa , Neuralgia , Humanos , Adolescente , Hidradenitis Supurativa/diagnóstico , Calidad de Vida , Manejo del Dolor , Costo de EnfermedadRESUMEN
In 2020, over 1.2 million people were at risk of acquiring human immunodeficiency virus (HIV), though only 25% were prescribed pre-exposure prophylaxis (PrEP). Given the multitude of dermatologic manifestations of HIV and other sexually transmitted infections, dermatologic care can serve as the entry point to the HIV care continuum. Currently, there is limited data on specialists' perspectives on HIV PrEP prescribing. We aimed to survey clinicians and trainees in an academic dermatology department about HIV PrEP-related knowledge, attitudes, and practices. Survey questions were adapted from existing literature on HIV stigma and PrEP-related knowledge, attitudes, and practices. Composite scores for each domain were averaged and compared between clinicians and trainees using Wilcoxon's signed rank test or Fisher's exact test. Of 135 providers invited, 31 (23%) completed the survey (11 clinicians and 20 trainees). Of the 31 participants, 16 (52%) had specialized HIV experience and training. When asked about discriminatory beliefs, nine participants (29%) agreed that HIV infection is a "consequence of irresponsible behavior." PrEP knowledge was low, with 13 (42%) participants answering zero out of 3 PrEP knowledge questions correctly. Additionally, 10 (91%) clinicians reported poor knowledge of PrEP side effects, and eight clinicians (73%) indicated they were "not comfortable at all" in prescribing PrEP. No participant had prescribed PrEP, and 22 (70%) participants had never discussed PrEP with patients. Dermatology clinicians and trainees reported some levels of HIV stigma. Substantial gaps in PrEP knowledge and discussion were reported despite prior HIV discrimination training and HIV-related practice experience. Study limitations include a small sample size and a modest response rate. Addressing stigma among dermatologists and improving HIV PrEP education is vital to enhancing the healthcare outcomes of people living with HIV.
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Fármacos Anti-VIH , Dermatología , Infecciones por VIH , Profilaxis Pre-Exposición , Humanos , VIH , Infecciones por VIH/prevención & control , Infecciones por VIH/tratamiento farmacológico , Fármacos Anti-VIH/uso terapéutico , Conocimientos, Actitudes y Práctica en Salud , Encuestas y CuestionariosRESUMEN
Few reports have described how university programs have controlled COVID-19 outbreaks. Emory University established a case investigation and contact tracing program in June 2020 to identify and mitigate transmission of SARS-CoV-2 in the Emory community. In February 2021, this program identified a surge in COVID-19 cases. In this case study, we present details of outbreak investigation, construction of transmission networks to assess clustering and identify groups for targeted testing, and program quality metrics demonstrating the efficiency of case investigation and contact tracing, which helped bring the surge under control. During February 10-March 5, 2021, Emory University identified 265 COVID-19 cases confirmed by nucleic acid testing in saliva or nasopharyngeal samples. Most students with COVID-19 were undergraduates (95%) and were affiliated with Greek life organizations (70%); 41% lived on campus. Network analysis identified 1 epidemiologically linked cluster of 198 people. Nearly all students diagnosed with COVID-19 (96%) were interviewed the same day as their positive test result. Of 340 close contacts, 90% were traced and 89% were tested. The median time from contact interview to first test was 2 days (interquartile range, 0-6 days); 43% received a positive test result during their quarantine. The surge was considered under control within 17 days, after which new cases were no longer epidemiologically linked. Early detection through systematic testing protocols and rapid and near-complete contact tracing, paired with isolation and quarantine measures, helped to contain the surge. Our approach emphasizes the importance of early preparation of adequate outbreak response infrastructure and staff to implement interventions appropriately and consistently during a pandemic.