RESUMEN
BACKGROUND: Hidradenitis suppurativa (HS) has unique symptoms and physical features among skin diseases. Patient reported outcome measures (PROMs) agnostic to specific skin diseases may not fully characterise the influence of HS on quality of life (QoL). A HS-specific PROM is needed to capture the impact of HS on QoL in the real-world setting. OBJECTIVE: To validate the Hidradenitis Suppurativa Quality of Life Questionnaire (HiSQOL) as a HS-specific PROM by comparing it to the Dermatology Life Quality Index (DLQI) in clinical practice. METHODS: Data were drawn from the Adelphi HS Disease Specific Programme™, a cross-sectional survey of physicians and patients conducted in France, Germany, Italy, Spain, and the United States between November, 2020 and April, 2021. Practicing physicians each provided demographic and clinical data for 5-7 consecutively evaluated HS patients aged at least 10 years receiving any treatment for HS, and an additional 3 patients undergoing biologic treatment; only patients aged at least 18 years were included in this study. Patients completed the DLQI and HiSQOL. Construct validity was assessed by Pearson's correlation between DLQI and HiSQOL scores. The HiSQOL item discrimination was assessed by comparing differences in item responses between the highest and lowest 25% of HiSQOL scores. Multivariable linear regressions assessed relationships between individual PROM item responses and the total score of the other PROM. RESULTS: In total, 677 patients [mean age of 34.3 (11.3) years; female (57.3%, n=388)] completed both the HiSQOL and DLQI. There was strong correlation between HiSQOL and DLQI total scores (Pearson's correlation 0.87 [95% confidence interval: 0.85-0.89, p<0.001]). The HiSQOL items that had the biggest impact on QoL related to "Embarrassment", "Depression" and "Anxiety", items that also had among the lowest relationship to total DLQI score. CONCLUSIONS: The HiSQOL is a valid tool for assessing QoL in HS patients in the real-world setting. Furthermore, the HiSQOL better captures those aspects of HS that have the highest impact on QoL, including depression and anxiety, which are not captured by the DLQI.
RESUMEN
OBJECTIVE: Chronic spontaneous urticaria (CSU) is a debilitating inflammatory skin condition, often impacting quality of life. International guidelines recommend omalizumab, an anti-immunoglobulin E antibody, for second-line treatment. Our objective was to understand patient characteristics associated with prescription of omalizumab, and assess real-world outcomes in patients with CSU treated with omalizumab. METHODS: We analyzed data from the Adelphi Real World CSU Disease Specific Programme, a cross-sectional survey with retrospective data collection (December 2020-October 2021) from physicians and patients with CSU in the United States. RESULTS: Data from allergists (n = 45), dermatologists (n = 51), and primary care physicians (PCPs; n = 20) were included. At the time of data collection, one-third of patients were receiving omalizumab (n = 220) and 67% were eligible for but not receiving omalizumab (n = 455). Using logistic regression, the odds of receiving omalizumab were higher in patients whose entire bodies were affected by hives [odds ratio (OR) = 2.551; 95% confidence interval (CI) 1.502-4.333; p < 0.001] or with deteriorating/unstable prognoses at treatment initiation [OR = 2.219; 95% CI 1.031-4.777; p = 0.042], and lower in patients managed by PCPs [OR = 0.276; 95% CI 0.130-0.584; p < 0.001]. Estimates from an inverse probability weighted regression adjustment model indicated that patients receiving omalizumab had higher treatment satisfaction, improvements in itching, hives, angioedema, insomnia, and anxiety, and lower impact on work productivity, compared with patients not receiving omalizumab. CONCLUSION: Around two-thirds of patients with CSU considered eligible for omalizumab were not receiving the guideline-recommended therapy. Patients receiving omalizumab had better real-world outcomes compared with patients not receiving omalizumab. Ensuring patients receive the most appropriate treatment could benefit patients with CSU.
People with a skin rash known as chronic spontaneous urticaria (also called long-lasting hives) have itchy spots that last longer than 6 weeks. People with long-lasting hives may be treated with a medicine called omalizumab to help their itching. We asked doctors why they gave some people omalizumab. We found that only one out of every three people with long-lasting hives were given omalizumab. Doctors gave some people omalizumab because they had long-lasting hives on their whole body or their hives were getting worse. Other people received omalizumab because they were seeing a specialist doctor (allergist) instead of a primary care physician (also called a general practitioner). When compared with people who received other medicines, people being treated with omalizumab had reduced itching, less anxiety, and better well-being. These findings could help doctors choose the right medicine for people with long-lasting hives.
RESUMEN
Hidradenitis suppurativa (HS) is an inflammatory skin disease associated with high morbidity and disability that has limited treatment options. People from racial and ethnic minority groups may experience greater disease severity and delay to diagnosis. This study assessed the impact of race/ethnicity on HS diagnosis and management in real-world clinical settings. Data were derived from the Adelphi Real World Hidradenitis Suppurativa Disease Specific Programme, a survey of dermatologists and their consulting HS patients in five European countries and the USA in 2020/2021. Dermatologists returned demographic and clinical data, and treatment goals and satisfaction for their next five to seven consulting patients. Patients completed a questionnaire on disease history and diagnosis, disease burden, and treatment satisfaction. Groups were compared with bivariate tests. In total, 312 physicians returned data on 1787 patients; 57.6% were female and 77.7% White. People from racial and ethnic minority groups were younger than White patients (32.9 ± 11.6 vs. 34.9 ± 12.4, mean ± standard deviation) and reported symptoms at a younger age (23.3 ± 10.8 vs. 26.2 ± 11.1), but their time to first consultation was longer than for White patients (2.6 ± 5.7 vs. 1.2 ± 2.5 years). People from racial and ethnic minority groups took longer to receive a correct diagnosis following first consultation (2.7 ± 5.3 vs. 1.5 ± 4.1 years) and were more likely to be misdiagnosed with boils (73.5% vs. 40.4%). People from racial and ethnic minority groups had a greater disease awareness at diagnosis and reported wanting greater support. People from racial and ethnic minority groups reported a greater impact on life, more severe pain, and a greater level of activity impairment in the Work Productivity and Activity Impairment: General Health (27.0 ± 25.2 vs. 20.0 ± 20.6). All P values were ≤0.05. These data show evidence of delayed diagnosis and higher HS symptom burden amongst people from racial and ethnic minority groups, highlighting health disparities in HS.