6 research outputs found

    Still fighting for breath: A patient survey of the challenges and impact of severe asthma

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    We conducted a large global survey, Still Fighting for Breath, in patients with severe persistent asthma, 10 years after the Fighting for Breath survey to assess the impact of disease on patients’ lives and to determine if control and management have changed in recent years. Data were collected from 1333 adults (aged >18 years) and caregivers of children (aged 6–17 years) with severe persistent asthma from nine countries through an online survey conducted in 2016 by GfK. A decade after the first survey, our results showed that the impact of severe asthma has not changed significantly and a high proportion of patients with severe asthma remain inadequately controlled. A large discrepancy was observed between the proportion of patients who perceived their asthma to be well controlled (42%) and the proportion of patients who reported to be well controlled as per the Global Initiative for Asthma (GINA) assessment (6%). Although most patients perceived their asthma to be controlled, many experienced frequent symptoms that affected their daily lives. Thus, there is a need for improved management (support and strategies) of patients with severe persistent asthma and improved coordination of efforts that would enable these patients to achieve better disease control. © ERS 2018

    Still Fighting for Breath: a patient survey of the challenges and impact of severe asthma.

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    We conducted a large global survey, Still Fighting for Breath, in patients with severe persistent asthma, 10 years after the Fighting for Breath survey to assess the impact of disease on patients' lives and to determine if control and management have changed in recent years. Data were collected from 1333 adults (aged >18 years) and caregivers of children (aged 6-17 years) with severe persistent asthma from nine countries through an online survey conducted in 2016 by GfK. A decade after the first survey, our results showed that the impact of severe asthma has not changed significantly and a high proportion of patients with severe asthma remain inadequately controlled. A large discrepancy was observed between the proportion of patients who perceived their asthma to be well controlled (42%) and the proportion of patients who reported to be well controlled as per the Global Initiative for Asthma (GINA) assessment (6%). Although most patients perceived their asthma to be controlled, many experienced frequent symptoms that affected their daily lives. Thus, there is a need for improved management (support and strategies) of patients with severe persistent asthma and improved coordination of efforts that would enable these patients to achieve better disease control

    LB756 Patient-reported outcomes for sarecycline effectiveness in Acne Vulgaris in real-world settings: PROSES study protocol

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    Introduction: The detrimental psychosocial impact of acne vulgaris is well established. Patient-reported outcomes are needed to fully understand the psychosocial benefits of acne treatment. Sarecycline, a novel narrow-spectrum antibiotic, demonstrated efficacy, safety, and improvement in health-related quality of life (HRQOL) in clinical trials and is approved for treatment of moderate-to-severe acne. In 2020, a consensus panel generated a 10-question expert panel questionnaire (EPQ), which, along with the validated acne symptom and impact scale (ASIS), was considered a high-quality tool for real-world assessment of patient-reported HRQOL. The HRQOL benefits of sarecycline will be assessed using these instruments. Methods: This single-group, prospective, 12-week cohort study is expected to enroll 300 patients (age, ≥9 years) with moderate-to-severe acne treated with sarecycline as part of routine care in up to 50 US community practices. The primary endpoint is patient-reported outcomes at week 12. At the baseline and week-12 visits, patients and caregivers of pediatric patients will complete the EPQ and ASIS. Additional endpoints include sarecycline effectiveness (success on investigator global assessment), satisfaction, safety, and tolerability. Conclusions: This real-world study of sarecycline will be the first to use the most recent expert panel recommendations to evaluate HRQOL for patients with acne

    Chronic inducible urticaria (CIndU) in Europe, Central America, and South America: findings from visit 1 of the worldwide aware study

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    Charite, Allergie Ctr Charite ECARF, Dept Dermatol & Allergy, Berlin, GermanyHosp Gen Plaza Salud, Santo Domingo, Dominican RepNovartis Pharma AG, Basel, SwitzerlandUniv Fed São Paulo, Sau Paulo, BrazilUniv Santo Amaro, Sau Paulo, BrazilCtr Hosp Univ Poitiers, Serv Dermatol, Poitiers, FranceRTI Hlth Solut, Res Triangle Pk, NC USAVall Dhebron Hosp, Internal Med, Barcelona, SpainUniv Manchester, Salford Royal NHS Fdn Trust, Salford, Lancs, EnglandRTI Hlth Solut, Manchester, Lancs, EnglandSOD Immunoallergy Careggi Univ Hosp, Florence, ItalyHosp Arnau Vilanova, Dermatol Dept, Valencia, SpainUniv Fed São Paulo, Sau Paulo, BrazilWeb of Scienc

    Patient-reported well-being in value-based care using tildrakizumab in a real-world setting: protocol of a multinational, phase IV, 1-cohort prospective observational study (the POSITIVE study).

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    INTRODUCTION: Psoriasis is a chronic inflammatory skin disease that negatively impacts the quality of life of patients and their families. However, the most commonly used decision-making tools in psoriasis, Psoriasis Area and Severity Index (PASI), Physician Global Assessment (PGA) and Dermatology Life Quality Index (DLQI), do not fully capture the impact of psoriasis on patients' lives. In contrast, the well-established 5-item WHO Well-being Index (WHO-5) assesses the subjective psychological well-being of patients. Moreover, while drug innovations became available for psoriasis, data on the impact of these therapies on patients' lives and their closest environment (family, physicians) are limited. This study will assess the effect of tildrakizumab, an interleukin-23p19 inhibitor, on the overall well-being of patients with moderate-to-severe psoriasis. Moreover, the long-term benefit of tildrakizumab on physicians' satisfaction and partners' lives of patients with psoriasis will be evaluated. METHODS AND ANALYSIS: This non-interventional, prospective, observational, real-world evidence study will involve multiple sites in Europe and approximately 500 adults with moderate-to-severe psoriasis treated with tildrakizumab. Each patient will be followed for 24 months. The primary endpoint is well-being measured by the WHO-5 questionnaire. Key secondary endpoints include Physician's Satisfaction and partner's quality of life (FamilyPso). Other endpoints will evaluate skin-generic quality of life (DLQI-R), Treatment Satisfaction Questionnaire for Medication (TSQM-9), Treatment-related Patient Benefit Index 'Standard', 10 items (PBI-S-10) and work productivity and activity impairment due to psoriasis (WPAI:PSO). Statistical analyses will be based on observed cases. Multiple imputations will be performed as a sensitivity analysis, and adverse events will be reported. ETHICS AND DISSEMINATION: The study will be conducted according to the protocol, which received ethics committee approval and applicable regulatory requirements of each participating country. The results will be disseminated through scientific publications and congress presentations. TRAIL REGISTRATION NUMBER: ClinicalTrials.gov Identifier: NCT04823247 (Pre-results)

    Healthcare resource utilisation due to chronic urticaria in Europe, South America, and Central America: findings from visit 1 of the worldwide aware study

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    Charite, Dept Dermatol & Allergy, Allergie Ctr Charite ECARF, Berlin, GermanyHosp Gen Plaza Salud, Santo Domingo, Dominican RepNovartis Pharma AG, Basel, SwitzerlandUniv Fed São Paulo, Sau Paulo, BrazilUniv Santo Amaro, Sau Paulo, BrazilCtr Hosp Univ Poitiers, Serv Dermatol, Poitiers, FranceRTI Hlth Solut, Res Triangle Pk, NC USAVall dHebron Hosp, Internal Med, Barcelona, SpainUniv Manchester, Salford Royal NHS Fdn Trust, Salford, Lancs, EnglandRTI Hlth Solut, Manchester, Lancs, EnglandCareggi Univ Hosp, SOD Immunoallergy, Florence, ItalyHosp Arnau Vilanova, Dept Dermatol, Valencia, SpainUniv Fed São Paulo, Sau Paulo, BrazilWeb of Scienc
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