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1.
JAMA Dermatol ; 159(11): 1258-1266, 2023 11 01.
Article in English | MEDLINE | ID: mdl-37755725

ABSTRACT

Importance: Although several clinician- and patient-reported outcome measures have been developed for trials in hidradenitis suppurativa (HS), there is currently no consensus on which measures are best suited for use in clinical practice. Identifying validated and feasible measures applicable to the practice setting has the potential to optimize treatment strategies and generate generalizable evidence that may inform treatment guidelines. Objective: To establish consensus on a core set of clinician- and patient-reported outcome measures recommended for use in clinical practice and to establish the appropriate interval within which these measures should be applied. Evidence Review: Clinician- and patient-reported HS measures and studies describing their psychometric properties were identified through literature reviews. Identified measures comprised an item reduction survey and subsequent electronic Delphi (e-Delphi) consensus rounds. In each consensus round, a summary of outcome measure components and scoring methods was provided to participants. Experts were provided with feasibility characteristics of clinician measures to aid selection. Consensus was achieved if at least 67% of respondents agreed with use of a measure in clinical practice. Findings: Among HS experts, response rates for item reduction, e-Delphi round 1, and e-Delphi round 2 surveys were 76.4% (42 of 55), 90.5% (38 of 42), and 92.9% (39 of 42), respectively; among patient research partners (PRPs), response rates were 70.8% (17 of 24), 100% (17 of 17), and 82.4% (14 of 17), respectively. The majority of experts across rounds were practicing dermatologists with 18 to 19 years of clinical experience. In the final e-Delphi round, most PRPs were female (12 [85.7%] vs 2 males [11.8%]) and aged 30 to 49 years. In the final e-Delphi round, HS experts and PRPs agreed with the use of the HS Investigator Global Assessment (28 [71.8%]) and HS Quality of Life score (13 [92.9%]), respectively. The most expert-preferred assessment interval in which to apply these measures was 3 months (27 [69.2%]). Conclusions and Relevance: An international group of HS experts and PRPs achieved consensus on a core set of HS measures suitable for use in clinical practice. Consistent use of these measures may lead to more accurate assessments of HS disease activity and life outcomes, facilitating shared treatment decision-making in the practice setting.


Subject(s)
Hidradenitis Suppurativa , Female , Humans , Male , Consensus , Delphi Technique , Hidradenitis Suppurativa/diagnosis , Hidradenitis Suppurativa/therapy , Outcome Assessment, Health Care , Patient Reported Outcome Measures , Quality of Life , Adult , Middle Aged
2.
Clin Infect Dis ; 77(10): 1395-1405, 2023 11 17.
Article in English | MEDLINE | ID: mdl-37384794

ABSTRACT

BACKGROUND: The diagnosis of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2)-associated multisystem inflammatory syndrome in adults (MIS-A) requires distinguishing it from acute coronavirus disease 2019 (COVID-19) and may affect clinical management. METHODS: In this retrospective cohort study, we applied the US Centers for Disease Control and Prevention case definition to identify adults hospitalized with MIS-A at 6 academic medical centers from 1 March 2020 to 31 December 2021. Patients MIS-A were matched by age group, sex, site, and admission date at a 1:2 ratio to patients hospitalized with acute symptomatic COVID-19. Conditional logistic regression was used to compare demographic characteristics, presenting symptoms, laboratory and imaging results, treatments administered, and outcomes between cohorts. RESULTS: Through medical record review of 10 223 patients hospitalized with SARS-CoV-2-associated illness, we identified 53 MIS-A cases. Compared with 106 matched patients with COVID-19, those with MIS-A were more likely to be non-Hispanic black and less likely to be non-Hispanic white. They more likely had laboratory-confirmed COVID-19 ≥14 days before hospitalization, more likely had positive in-hospital SARS-CoV-2 serologic testing, and more often presented with gastrointestinal symptoms and chest pain. They were less likely to have underlying medical conditions and to present with cough and dyspnea. On admission, patients with MIS-A had higher neutrophil-to-lymphocyte ratio and higher levels of C-reactive protein, ferritin, procalcitonin, and D-dimer than patients with COVID-19. They also had longer hospitalization and more likely required intensive care admission, invasive mechanical ventilation, and vasopressors. The mortality rate was 6% in both cohorts. CONCLUSIONS: Compared with patients with acute symptomatic COVID-19, adults with MIS-A more often manifest certain symptoms and laboratory findings early during hospitalization. These features may facilitate diagnosis and management.


Subject(s)
COVID-19 , Connective Tissue Diseases , Humans , Adult , United States/epidemiology , COVID-19/epidemiology , SARS-CoV-2 , Retrospective Studies , Systemic Inflammatory Response Syndrome/diagnosis , Systemic Inflammatory Response Syndrome/epidemiology
4.
Dermatology ; 239(3): 494-498, 2023.
Article in English | MEDLINE | ID: mdl-36907177

ABSTRACT

BACKGROUND: Vulvar lichen sclerosus (VLS) is a chronic, relapsing, inflammatory dermatosis that has significant impact on patients' quality of life (QoL). While disease severity and associated QoL impact have been studied, factors associated with treatment adherence and their relation to QoL in VLS remain unexplored. OBJECTIVE: The objectives of this study were to describe demographics, clinical characteristics, and skin-related QoL in VLS patients and to assess the relationship between QoL and treatment adherence. METHODS: This was a cross-sectional, single institution, electronic survey study. The relationship between adherence, measured using the validated Domains of Subjective Extent of Nonadherence (DOSE-Nonadherence) scale, and skin-related QoL, using the Dermatology Life Quality Index (DLQI) score, was assessed using Spearman correlation. RESULTS: Of 28 survey respondents, 26 provided complete responses. Among 9 patients classified as adherent and 16 classified as nonadherent, mean DLQI total score was 1.8 and 5.4, respectively. Spearman correlation between summary nonadherence score and DLQI total was 0.31 (95% CI: -0.09-0.63) overall and 0.54 (95% CI: 0.15-0.79) when patients who reported missing doses due to asymptomatic disease were excluded. Most frequently reported factors preventing treatment adherence included application/treatment time (43.8%) and asymptomatic or well-controlled disease (25%). CONCLUSIONS: Though Qol impairment was relatively small in both our adherent and nonadherent groups, we identified important factors preventing treatment adherence, with the most common being application/treatment time. These findings may help dermatologists and other providers generate hypotheses as to how to facilitate better treatment adherence among their patients with VLS, with the goal of optimizing QoL.


Subject(s)
Vulvar Lichen Sclerosus , Female , Humans , Vulvar Lichen Sclerosus/drug therapy , Vulvar Lichen Sclerosus/complications , Quality of Life , Cross-Sectional Studies , Treatment Adherence and Compliance
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