Diagnostic journey and life impact of cholangiocarcinoma: results from surveys of patient and caregiver experiences.

Aim: To understand cholangiocarcinoma symptoms, diagnosis and treatment experience from the patient and caregiver perspective, including cholangiocarcinoma's impact on daily life, quality of life (QoL) and mental health. Methods: Patients and caregivers participated in two online surveys (in partnership with the Cholangiocarcinoma Foundation). Results: The patient survey data (n = 707) show a substantial impact of cholangiocarcinoma on QoL and mental health, with 34% of patients reporting symptoms consistent with moderately severe/severe depression. The caregiver survey data (n = 60) show that although caregivers experience satisfaction in their role of caring for a loved one, managing the demands of caregiving exacts a physical, mental and emotional toll. Conclusion: These surveys highlight the need for better palliative and supportive care interventions.

What is this article about? It shows results from two surveys, one for people with cholangiocarcinoma (CCA, pronounced ko·lan·jee·o·car·sin·no·muh), and one for caregivers (people who take care of family or friends with CCA without payment). CCA is a rare and aggressive cancer. The caregivers we surveyed were not necessarily taking care of the people with CCA who we surveyed. We did the surveys to find out how CCA changed the lives of people in these two groups. What were the results? We surveyed 707 people with CCA. Patients reported in the survey that having CCA impacted their daily lives in lots of ways. Most needed help with daily chores like housekeeping and shopping. Both tiredness and anxiety were reported by about two in three people with CCA. More than one in three had said they had symptoms indicating potential depression, which means patients should have their mental health evaluated. CCA also reduced their sexual desire and intimacy with their partner. We surveyed 60 caregivers who reported both good and bad experiences taking care of a person with CCA. The good experiences included knowing that their loved one was well cared for and learning to deal with difficult situations. Many caregivers also felt closer to their loved one with CCA. The bad experiences included exhaustion and emotional and mental stress. Caregivers felt challenged by trying to understand CCA and the treatment options available. What do the results of the study mean? Patients with CCA and their caregivers need more help and support.

Exploring the natural and treatment history of vitiligo: perceptions of patients and healthcare professionals from the global VALIANT study.

BACKGROUND: Vitiligo is a chronic autoimmune disease affecting melanocytes, resulting in skin depigmentation. 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 the patients had > 5% 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 had been told that vitiligo could not be treated. One-quarter of HCPs (26.3%) did not believe that 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 or cessation of spread (24.7% and 18.5%) and repigmentation (22.5% and 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 the lack of effective therapies. Patients reported high rates of initial misdiagnosis; many ceased seeking healthcare because they perceived that vitiligo could not be treated. The findings highlight the need for earlier diagnosis and improved disease management for vitiligo.

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.

COVID-19 illness in relation to sleep and burnout.

BACKGROUND: Sleep habits and burnout have been shown to be associated with increase in infectious diseases, but it is unknown if these factors are associated with risk of COVID-19. We assessed whether sleep and self-reported burnout may be risk factors for COVID-19 among high-risk healthcare workers (HCWs). METHODS: From 17 July to 25 September 2020, a web-based survey was administered to HCWs in six countries (France, Germany, Italy, Spain, UK, USA) with a high frequency of workplace exposure. Participants provided information on demographics, sleep (number of sleep hours at night, daytime napping hours, sleep problems), burnout from work and COVID-19 exposures. We used multivariable linear and logistic regression models to evaluate the associations between sleep, burnout and COVID-19. RESULTS: Among 2884 exposed HCWs, there were 568 COVID-19 cases and 2316 controls. After adjusting for confounders, 1-hour longer sleep duration at night was associated with 12% lower odds of COVID-19 (p=0.003). Daytime napping hours was associated with 6% higher odds, but the association varied by countries, with a non-significant inverse association in Spain. Compared with having no sleep problems, having three sleep problems was associated with 88% greater odds of COVID-19. Reporting burnout 'every day' was associated with greater odds of COVID-19 (OR: 2.60, 95% CI 1.57 to 4.31, p trend across categories=0.001), longer duration (OR: 2.98, 95% CI 1.10 to 8.05, p trend=0.02) and severity (OR: 3.26, 95% CI 1.25 to 8.48, p trend=0.02) compared with reporting no burnout. These associations remained significant after adjusting for frequency of COVID-19 exposures. CONCLUSIONS: In six countries, longer sleep duration was associated with lower odds of COVID-19, but the association with daytime nap may not be consistent across countries. Greater sleep problems and high level of burnout were robustly associated with greater odds of COVID-19. Sleep and burnout may be risk factors for COVID-19 in high-risk HCWs.

Plant-based diets, pescatarian diets and COVID-19 severity: a population-based case-control study in six countries.

BACKGROUND: Several studies have hypothesised that dietary habits may play an important role in COVID-19 infection, severity of symptoms, and duration of illness. However, no previous studies have investigated the association between dietary patterns and COVID-19. METHODS: Healthcare workers (HCWs) from six countries (France, Germany, Italy, Spain, UK, USA) with substantial exposure to COVID-19 patients completed a web-based survey from 17 July to 25 September 2020. Participants provided information on demographic characteristics, dietary information, and COVID-19 outcomes. We used multivariable logistic regression models to evaluate the association between self-reported diets and COVID-19 infection, severity, and duration. RESULTS: There were 568 COVID-19 cases and 2316 controls. Among the 568 cases, 138 individuals had moderate-to-severe COVID-19 severity whereas 430 individuals had very mild to mild COVID-19 severity. After adjusting for important confounders, participants who reported following 'plant-based diets' and 'plant-based diets or pescatarian diets' had 73% (OR 0.27, 95% CI 0.10 to 0.81) and 59% (OR 0.41, 95% CI 0.17 to 0.99) lower odds of moderate-to-severe COVID-19 severity, respectively, compared with participants who did not follow these diets. Compared with participants who reported following 'plant-based diets', those who reported following 'low carbohydrate, high protein diets' had greater odds of moderate-to-severe COVID-19 (OR 3.86, 95% CI 1.13 to 13.24). No association was observed between self-reported diets and COVID-19 infection or duration. CONCLUSION: In six countries, plant-based diets or pescatarian diets were associated with lower odds of moderate-to-severe COVID-19. These dietary patterns may be considered for protection against severe COVID-19.

Access to personal protective equipment in exposed healthcare workers and COVID-19 illness, severity, symptoms and duration: a population-based case-control study in six countries.

BACKGROUND: Despite the widespread implementation of personal protective equipment (PPE) in the COVID-19 pandemic, there are surprisingly few studies of its impact. To assess the risk, severity and duration of COVID-19 in relation to access to PPE in at-risk healthcare workers (HCWs). METHODS: From 17 July to 25 September 2020, at-risk physicians and nurses registered as a provider in the Survey Healthcare Globus network in six countries (the UK, Germany, France, Italy, Spain and USA) were identified based on adult medical specialties with frequent and close contact with patients with COVID-19. Exposed HCWs completed a detailed questionnaire including demographics, medical, social and lifestyle factors. COVID-19 cases were defined as COVID-19 symptoms (fever, cough, fatigue, loss of taste or smell) and asymptomatic COVID-19 test positive cases. RESULTS: Among 2884 exposed HCWs (94% medical doctors and 6% nurses or physician assistants), there were 514 reports of COVID-19 illness and 54 asymptomatic COVID-19 test positive cases. COVID-19 risk was significantly associated with close contact with COVID-19 cases both inside and outside the workplace, number of work shifts and hours worked per week. Limited access to PPE compared with access to a fresh mask, gown and gloves and face shield with each patient encounter was associated with a 2.2-fold to 22-fold increased risk of reporting COVID-19 symptoms (p<0.0001), a pattern consistent across all six countries. Further, limited access to PPE was associated with symptom duration greater than 2 weeks and the presence of moderate to severe symptoms such as difficulty breathing, abnormal chest X-ray, low oxygen saturations, respiratory distress and acute lung injury. CONCLUSION: In six countries, less access to PPE was strongly associated with both increased risk of reporting COVID-19 illness as well as more prolonged and severe disease course in frontline HCWs.