scholarly journals Chronic Urticaria in the Real-Life Clinical Practice Setting in Portugal: Baseline Results from the Non-Interventional Multicentre AWARE Study

2019 ◽  
Vol 32 (2) ◽  
pp. 133 ◽  
Author(s):  
Ana Célia Costa ◽  
Isabel Rosmaninho ◽  
Arminda Guilherme ◽  
José Ferreira ◽  
Joana Antunes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Chronic Urticaria ◽  
Real World ◽  
Life Index ◽  
The Real ◽  
Real World Setting ◽  
H1 Antihistamines ◽  
Quality Of Life Index ◽  
Urticaria Activity Score

Introduction: There is a paucity of information regarding chronic urticaria patients’ care in a real-world setting. The objective of this study was to report and evaluate the baseline characteristics of Portuguese chronic urticaria patients refractory to H1-antihistamines included in the AWARE study. Material and Methods: This is a non-interventional cohort study. Adult patients with a diagnosis of chronic urticaria with symptoms for at least two months, refractory to H1-antihistamines, consulting one of the 10 participating urticaria centers throughout Portugal have been included in the study. Baseline sociodemographic data, medical history, clinical parameters, medication, weekly urticaria activity score, and dermatology quality of life index have been collected. Results: Seventy six patients were included, of which 76.3% were women. The majority of patients had a diagnosis of chronic spontaneous urticaria (88.2%) and 39.5% had angioedema. Around 91.0% of patients were medicated with non-sedative H1-antihistamines and 35.4% with a third line therapy. Median dermatology quality of life index was 5.0 and median weekly urticaria activity score was 13.0. Discussion: The baseline results suggest that patients with chronic urticaria refractory to H1-antihistamines are being under-treated in the real-world setting. Conclusion: The AWARE study demonstrates the real impact of chronic urticaria on Portuguese patients refractory to H1-antihistamines treatment, and 30% report a very large or extremely large deleterious effect on their quality of life. The follow-up of these patients will allow evaluating strategies aimed at optimizing disease control.

scholarly journals Chronic urticaria in the real-life clinical practice setting in Portugal: 2-years results from the non-interventional multicenter AWARE study

2021 ◽  
Vol 34 (13) ◽  
Author(s):  
Célia Costa ◽  
Isabel Rosmaninho ◽  
On behalf of the AWARE Portuguese Study Investigational Group
Keyword(s):  
Quality Of Life ◽  
Chronic Urticaria ◽  
Symptom Relief ◽  
Significant Proportion ◽  
Real Life ◽  
The Real ◽  
Study Results ◽  
Quality Of Life Index ◽  
Urticaria Activity Score

Introduction: Information regarding chronic urticaria patients in the real-world setting is scarce. This analysis reports the two-year results of Portuguese patients included in the AWARE study.Material and Methods: Non-interventional cohort study. Adult patients with a diagnosis of chronic urticaria with symptoms for at least two months, refractory to H1-antihistamines, consulting one of the 10 participating urticaria centers throughout Portugal, from the 31st October 2014 to 31st July 2015, have been included in the study. Clinical parameters, medicines taken for urticaria symptom relief, weekly urticaria activity score, and dermatology quality of life index have been collected throughout the two years of the study.Results: Seventy-six patients were enrolled in the study. Results showed that the proportion of patients with omalizumab therapy almost duplicated after two years of the AWARE study, which was accompanied by the decrease of medical resources use and absenteeism. Moreover, urticaria severity and impact on quality of life both decreased after one year and continued to decrease at two years, although decreased severity was significant at both time points and quality of life was only significant at two years. At the end of two years, 79.0% of patients had their disease controlled compared to 29.3% at baseline (p < 0.001).Discussion: At the end of the AWARE study a significant proportion of patients had their disease controlled allowing for decreased use of medical resources.Conclusion: Chronic urticaria still has a significant impact on quality of life and therefore there is opportunity for further therapy optimization.

scholarly journals Real-world evidence of NEPA, netupitant-palonosetron, in chemotherapy-induced nausea and vomiting prevention: effects on quality of life

2020 ◽  
Vol 16 (14) ◽  
pp. 939-953 ◽  
Author(s):  
Meinolf Karthaus ◽  
Gülten Oskay-Özcelik ◽  
Pia Wülfing ◽  
Carsten Hielscher ◽  
Dagmar Guth ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Real World ◽  
Complete Response ◽  
Emetogenic Chemotherapy ◽  
Moderately Emetogenic Chemotherapy ◽  
The Real ◽  
Beneficial Effects ◽  
Antiemetic Prophylaxis ◽  
Real World Setting

Aim: To determine quality of life, effectiveness and safety of oral netupitant-palonosetron (NEPA)–based antiemetic prophylaxis in the real-world setting. Materials & methods: Prospective, noninterventional study in adults receiving highly or moderately emetogenic chemotherapy and NEPA for three cycles. NEPA was administered per summary of product characteristics. Results: A total of 2429 patients enrolled, 2173 were evaluable. ‘No impact on daily life’ due to vomiting was reported by 85%/82% of patients in the highly emetogenic chemotherapy/moderately emetogenic chemotherapy groups in cycle 1, with rates of 54%/59% for nausea. Overall, complete response rate was 89%/87%/75% in the acute/delayed/overall phases. NEPA was well tolerated. Conclusion: NEPA had beneficial effects on the quality of life of a heterogeneous group of cancer patients and was safe and effective in the real-world setting.

scholarly journals A Specialized Therapeutic Approach to Chronic Urticaria Patient’s Refractory to H1-Antihistamines Improves the Burden of the Disease. The Spanish AWARE Experience

2020 ◽  
Vol 32 (3) ◽  
Author(s):  
A Gimenez-Arnau ◽  
J Bartra ◽  
M Ferrer ◽  
I Jauregui ◽  
J Borbujo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disease Activity ◽  
Chronic Urticaria ◽  
Life Quality ◽  
Life Questionnaire ◽  
H1 Antihistamines ◽  
Third Line ◽  
International Multicenter Study ◽  
Urticaria Activity Score

Objective: AWARE study assesses disease activity, patient’s quality of life (QoL) and treatment patterns in chronic urticaria (CU) patient’s refractory to H1-antihistamines (H1-AH) in clinical practice during the first year of the study. Methods: Observational, prospective (24 months), international, multicenter study. Patients ≥18 years with H1-AH-refractory CU diagnosis (>2 months). At each visit, patients completed questionnaires to assess disease burden (Urticaria Control Test [UCT]), disease activity (7 day-Urticaria Activity Score [UAS7]), QoL (Dermatology Life Quality index [DLQI], Chronic Urticaria Quality of Life Questionnaire [CU-Q2oL], Angioedema Quality of Life [AE-QoL]). We present Spanish data. Results: 270 evaluable patients included (73.3% female, mean age [SD] 48.9 [14.7] years). At baseline, 89.3% were prescribed a CU treatment. After 1-year, first/second line treatments tended to decrease and third line to increase. 47.0% patients experienced angioedema at baseline, being 11.8% at 1-year. Mean (SD) AE-QoL went from 45.2 (28.7) to 24.0 (25.8). Mean (SD) UCT went from 7.0 (4.5) to 12.1 (4.1). According to UAS7, 38.2% patients reported absence of wheals and itch in the last 7 days at 1-year versus 8.3% at baseline. Mean (SD) DLQI went from 8.0 (7.4) to 2.8 (4.6). At 1-year visit, the percentage of patients reporting high/very high QoL impact went from 29.9% to 9.6%. Conclusions: Spanish H1-AH-refractory CU patients present a lack of symptomatology control with an important impact in their QoL. Continuous follow-up of chronic spontaneous urticaria patients and third line therapies have shown a tendency to reduce the burden of the disease and to improve patients’ QoL.

scholarly journals Management of patients with multiple myeloma beyond the clinical-trial setting: understanding the balance between efficacy, safety and tolerability, and quality of life

2021 ◽  
Vol 11 (2) ◽  
Author(s):  
Evangelos Terpos ◽  
Joseph Mikhael ◽  
Roman Hajek ◽  
Ajai Chari ◽  
Sonja Zweegman ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Trial ◽  
Multiple Myeloma ◽  
Real World ◽  
Financial Burden ◽  
Phase 3 ◽  
The Real ◽  
Real World Setting ◽  
Definition Of

AbstractTreatment options in multiple myeloma (MM) are increasing with the introduction of complex multi-novel-agent-based regimens investigated in randomized clinical trials. However, application in the real-world setting, including feasibility of and adherence to these regimens, may be limited due to varying patient-, treatment-, and disease-related factors. Furthermore, approximately 40% of real-world MM patients do not meet the criteria for phase 3 studies on which approvals are based, resulting in a lack of representative phase 3 data for these patients. Therefore, treatment decisions must be tailored based on additional considerations beyond clinical trial efficacy and safety, such as treatment feasibility (including frequency of clinic/hospital attendance), tolerability, effects on quality of life (QoL), and impact of comorbidities. There are multiple factors of importance to real-world MM patients, including disease symptoms, treatment burden and toxicities, ability to participate in daily activities, financial burden, access to treatment and treatment centers, and convenience of treatment. All of these factors are drivers of QoL and treatment satisfaction/compliance. Importantly, given the heterogeneity of MM, individual patients may have different perspectives regarding the most relevant considerations and goals of their treatment. Patient perspectives/goals may also change as they move through their treatment course. Thus, the ‘efficacy’ of treatment means different things to different patients, and treatment decision-making in the context of personalized medicine must be guided by an individual’s composite definition of what constitutes the best treatment choice. This review summarizes the various factors of importance and practical issues that must be considered when determining real-world treatment choices. It assesses the current instruments, methodologies, and recent initiatives for analyzing the MM patient experience. Finally, it suggests options for enhancing data collection on patients and treatments to provide a more holistic definition of the effectiveness of a regimen in the real-world setting.

HRCA Quality of Life Index

1986 ◽  
Author(s):  
John N. Morris ◽  
Samy Suissa ◽  
Sylvia Sherwood ◽  
Susan M. Wright ◽  
David Greer
Keyword(s):  
Quality Of Life ◽  
Life Index ◽  
Quality Of Life Index
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