34631 Do patients with vitiligo and health care professionals treating them recognize the burden in living with the disease in the United States? Findings from the VALIANT study

Vitiligo is a chronic autoimmune disease characterized by the destruction of melanocytes, resulting in pale or white patches of skin. The population-based Vitiligo and Life Impact Among International Communities (VALIANT) study sought to understand the impact and burden of vitiligo on quality of life (QoL) from the patient and physician perspective from around the world. The VALIANT study recruited adult participants (aged ≥18 years who self-reported a vitiligo diagnosis) via an online panel. Participants were asked questions regarding their mental health, psychosocial burden, and behavior in professional and social situations. Separately, health care professionals (HCPs; physicians, nurse practitioners, or physician assistants) who treat patients with vitiligo completed an online-based questionnaire. In the United States, 608 patients and 250 HCPs (166 dermatologists and 84 primary care providers) participated in the survey. Confidence in the ability to improve QoL and long-term psychological outcomes of their patients with vitiligo was noted in 67% and 58% of HCPs, respectively. HCPs and patients were asked the same questions regarding avoidance/impact behaviors; concordance was achieved on items such as wearing certain clothing to cover vitiligo lesions and avoiding going to beach/pool/social events. However, HCPs often underestimated the impact of vitiligo compared with the patient’s perspective in other areas, such as making career choices (33% vs 51%), managing other medical diseases (25% vs 49%), and obtaining other preventive care (20% vs 49%). In summary, increased understanding between HCPs and patients with vitiligo regarding a holistic understanding of the psychological burden and mental health of patients is needed

34612 Exploring the natural history of vitiligo in the United States: Findings from the VALIANT study

Vitiligo is a chronic autoimmune disease characterized by the destruction of melanocytes, resulting in depigmented skin lesions. Epidemiology studies in vitiligo are often limited to smaller sample sizes and rely on dermatology clinics as the source population. The population-based Vitiligo and Life Impact Among International Communities (VALIANT) study sought to understand the natural history of vitiligo among patients around the world. Here, data from US participants are presented. Participants were recruited via an online panel. Adults (aged ≥18 years) who self-reported a vitiligo diagnosis by a health care professional were eligible to participate. Of 608 US patients, 58% were male; median (range) age at the time of the survey was 36 (18–83) years. Mean disease duration was 11 years, with a mean 1.6 years between first noticing lesions and achieving a formal diagnosis. More than one-third of patients were previously misdiagnosed (37%), with higher rates among patients with darker skin types (67% for Fitzpatrick types IV–VI). Nearly two-thirds (62%) directly sought treatment for vitiligo; vitiligo was an incidental finding in the remaining 38%. Nearly two-thirds (64%) were diagnosed by a dermatologist, or a nurse practitioner or physician assistant in a dermatology-focused practice. Most patients (71%) noted a family history of vitiligo (comparable paternal vs maternal). Median body surface area affected by vitiligo was 4.23%, as measured by the self-assessed Vitiligo Extent Scale. In summary, these findings provide a new perspective on the diagnosis journey for patients with vitiligo and highlight the need for accurate, more timely diagnosis

Zephyr: The Fourth Issue

This is the fourth issue of Zephyr, the University of New England\u27s journal of creative expression. Since 2000, Zephyr has published original drawings, paintings, photography, prose, and verse created by current and former members of the University community. Zephyr\u27s Editorial Board is made up exclusively of matriculating students.https://dune.une.edu/zephyr/1003/thumbnail.jp

Exploring the natural and treatment history of vitiligo: patient and healthcare professional perceptions from the global VALIANT study

BACKGROUND: Vitiligo is a chronic autoimmune disease affecting melanocytes, resulting in depigmentation of skin. Patients with vitiligo often have reduced quality of life and comorbid autoimmune conditions and have reported a lack of available treatments for their vitiligo. OBJECTIVES: The Vitiligo and Life Impact Among International Communities (VALIANT) study is the first global survey to explore the natural history and management of vitiligo from the perspectives of patients and healthcare professionals (HCPs). METHODS: The survey recruited adults (≥18 years) diagnosed with vitiligo and HCPs treating patients with vitiligo via an online panel in 17 countries. Patients were queried regarding clinical characteristics and vitiligo treatment. HCPs were queried regarding diagnosis and management of patients with vitiligo. RESULTS: Included in the analysis were 3541 patients and 1203 HCPs. Nearly half (45.2%) of patients had \u3e5% affected body surface area; 57.1% reported family history. Patients obtained formal diagnosis after a mean (SD) of 2.4 (4.1) years; 44.9% reported previous misdiagnosis. Many patients (56.7%) reported being told that vitiligo could not be treated; 53.9% of HCPs believed patients who never treated their vitiligo were told that vitiligo could not be treated. One-quarter of HCPs (26.3%) did not believe an effective therapy for vitiligo exists; 44.6% of patients reported giving up on finding an effective therapy. Top treatment goals for patients and HCPs, respectively, were reduction/cessation of spread (24.7%/18.5%) and repigmentation (22.5%/37.2%). Patient perception of effective care was similar for treatment by dermatologists (66.9%) and primary care HCPs (67.0%). CONCLUSIONS: Patients with vitiligo and HCPs reported similar treatment goals and expressed frustration with lack of effective therapies. Patients reported high rates of initial misdiagnosis; many ceased seeking healthcare because they perceived that vitiligo could not be treated. Findings highlight the need for earlier diagnosis and improved disease management for vitiligo

Risk of Cardiovascular Disease Associated with a Restless Legs Syndrome Diagnosis in a Retrospective Cohort Study from Kaiser Permanente Northern California

IntroductionRecent cross-sectional studies suggest that restless legs syndrome (RLS) may be associated with an increased prevalence of cardiovascular disease (CVD) comorbidity or risk factors. We evaluated whether primary or secondary RLS was associated with an increased risk of incident cardiovascular disease in a retrospective cohort study within Kaiser Permanente Northern California (KPNC).MethodsWe identified members of KPNC with primary RLS and secondary RLS between 1999 and 2008 by an algorithm that incorporated longitudinal clinical records related to the diagnosis and treatment of RLS and comorbidities. We then matched each RLS case with up to 50 individuals with no clinical records of RLS by age, sex, race/ethnicity, zip code, and membership duration. For the analyses we excluded any individual with coronary artery disease (CAD: angina, acute myocardial infarction, coronary revascularization procedure, CAD death), CVD (CAD plus stroke), and hypertension at baseline. New cardiovascular events were determined from clinical records. Follow-up ended at an outcome event, disenrollment from KPNC, or death, whichever occurred earliest. There were over 473,358 person-y of follow-up in this cohort analysis with a mean follow-up time of 3.91 y and range from 6 mo to 12 y. Survival analysis techniques, including survival curves and proportional hazard regression models, were used to assess the association between RLS status and CVD.ResultsThere were 7,621 primary RLS and 4,507 secondary RLS cases identified and included in the study. In general, primary RLS cases were younger and had less comorbidity than secondary RLS cases. During the follow-up period, CVD was diagnosed in 478 primary RLS cohort members, CAD was diagnosed in 310, and hypertension events were identified in 1,466. Diagnosis in secondary RLS cohort members was made during the follow-up period with 451, 338, and 598 CVD, CAD, and hypertension events, respectively. Subjects with primary RLS had a similar risk of incident CVD (hazard ratio (HR) = 0.95; 95% confidence interval (CI) = 0.86-1.04) and CAD (HR = 0.99; 95% CI = 0.89-1.13) to the comparison cohort, with a slight elevation in the risk of hypertension events (HR = 1.19; 95% CI = 1.12-1.25), after multivariable adjustment. Individuals classified as secondary RLS had a significant increased risk of CVD (HR = 1.33; 95% CI = 1.21-1.46), CAD (HR = 1.40; 95% CI = 1.25-1.56), and hypertension (HR = 1.28; 95% CI = 1.18-1.40).ConclusionPrimary restless legs syndrome (RLS) was not associated with new-onset cardiovascular disease (CVD) or coronary artery disease (CAD) but was associated with a slight increased risk of hypertension. In contrast, secondary RLS was associated with an increased risk of CVD, CAD, and hypertension

Mental Health and Psychosocial Quality-of-Life Burden Among Patients With Vitiligo: Findings From the Global VALIANT Study

IMPORTANCE: Patients with vitiligo often have impaired quality of life (QOL) and experience substantial psychosocial burden. OBJECTIVE: To explore the global association of vitiligo with QOL and mental health from the patient perspective. DESIGN, SETTING, AND PARTICIPANTS: This qualitative study of the cross-sectional population-based Vitiligo and Life Impact Among International Communities (VALIANT) study was conducted from May 6, 2021, to June 21, 2021. Potential participants for this qualitative study were recruited from an online panel in 17 countries. Of 5859 surveyed adults (aged ≥18 years) who reported a vitiligo diagnosis, 3919 (66.9%) completed the survey, and 3541 (60.4%) were included in the analysis. EXPOSURES: Patients were asked questions regarding their emotional well-being, including QOL and mental health. MAIN OUTCOMES AND MEASURES: Reported analyses are descriptive and hypothesis generating. Vitiligo Impact Patient scale (VIPs) scores ranged from 0 to 60, with higher scores indicating more psychosocial burden. RESULTS: The median age of the 3541 patients was 38 years (range, 18-95 years), and 1933 (54.6%) were male; 1602 patients (45.2%) had more than 5% affected body surface area (BSA; Self-Assessment Vitiligo Extent Score assessed), and 1445 patients (40.8%) had Fitzpatrick skin types IV to VI (ie, darker skin). The mean (SD) global short-form VIPs score was 27.3 (15.6) overall; patients from India (mean [SD], 40.2 [14.1]) reported the highest scores (ie, most burden). The QOL burden according to the scale was profound for patients with more than 5% affected BSA (mean [SD] score, 32.6 [14.2]), darker skin (mean [SD] score, 31.2 [15.6]), and lesions on the face (mean [SD] score, 30.0 [14.9]) or hands (mean [SD], 29.2 [15.2]). At least 40% of patients globally reported that vitiligo frequently affected aspects of their daily lives, including choosing clothes to wear (1956 of 3541 [55.2%]). Most patients (2103 of 3541 [59.4%]) reported concealing their vitiligo frequently. More than half of patients (2078 of 3541 [58.7%]) reported diagnosed mental health conditions, including anxiety (1019 of 3541 [28.8%]) and depression (866 of 3541 [24.5%]). The Patient Health Questionnaire-9 depression screener showed that 55.0% of patients (1948 of 3541) had moderate to severe depressive symptoms; the highest rates were in India (271 of 303 [89.4%]) and among patients with more than 5% affected BSA (1154 of 1602 [72.0%]) and darker skin (987 of 1445 [68.3%]). CONCLUSIONS AND RELEVANCE: This qualitative study found that, globally, patients with vitiligo reported being substantially affected in their emotional well-being, daily lives, and psychosocial health; the burden was typically greatest among patients with more than 5% affected BSA, darker skin types, and lesions on the face or hands. Survey findings suggest that patients reported having altered their behavior, expressed clear discontent, and have symptoms consistent with depression, which may be underdiagnosed

Prevalence of cerebral amyloid pathology in persons without dementia: a meta-analysis.

ImportanceCerebral amyloid-β aggregation is an early pathological event in Alzheimer disease (AD), starting decades before dementia onset. Estimates of the prevalence of amyloid pathology in persons without dementia are needed to understand the development of AD and to design prevention studies.ObjectiveTo use individual participant data meta-analysis to estimate the prevalence of amyloid pathology as measured with biomarkers in participants with normal cognition, subjective cognitive impairment (SCI), or mild cognitive impairment (MCI).Data sourcesRelevant biomarker studies identified by searching studies published before April 2015 using the MEDLINE and Web of Science databases and through personal communication with investigators.Study selectionStudies were included if they provided individual participant data for participants without dementia and used an a priori defined cutoff for amyloid positivity.Data extraction and synthesisIndividual records were provided for 2914 participants with normal cognition, 697 with SCI, and 3972 with MCI aged 18 to 100 years from 55 studies.Main outcomes and measuresPrevalence of amyloid pathology on positron emission tomography or in cerebrospinal fluid according to AD risk factors (age, apolipoprotein E [APOE] genotype, sex, and education) estimated by generalized estimating equations.ResultsThe prevalence of amyloid pathology increased from age 50 to 90 years from 10% (95% CI, 8%-13%) to 44% (95% CI, 37%-51%) among participants with normal cognition; from 12% (95% CI, 8%-18%) to 43% (95% CI, 32%-55%) among patients with SCI; and from 27% (95% CI, 23%-32%) to 71% (95% CI, 66%-76%) among patients with MCI. APOE-ε4 carriers had 2 to 3 times higher prevalence estimates than noncarriers. The age at which 15% of the participants with normal cognition were amyloid positive was approximately 40 years for APOE ε4ε4 carriers, 50 years for ε2ε4 carriers, 55 years for ε3ε4 carriers, 65 years for ε3ε3 carriers, and 95 years for ε2ε3 carriers. Amyloid positivity was more common in highly educated participants but not associated with sex or biomarker modality.Conclusions and relevanceAmong persons without dementia, the prevalence of cerebral amyloid pathology as determined by positron emission tomography or cerebrospinal fluid findings was associated with age, APOE genotype, and presence of cognitive impairment. These findings suggest a 20- to 30-year interval between first development of amyloid positivity and onset of dementia

Prevalence of cerebral amyloid pathology in persons without dementia: a meta-analysis

Cerebral amyloid-β aggregation is an early pathological event in Alzheimer disease (AD), starting decades before dementia onset. Estimates of the prevalence of amyloid pathology in persons without dementia are needed to understand the development of AD and to design prevention studies.status: publishe