The impact of omalizumab on quality of life and its predictors in patients with chronic spontaneous urticaria: Real‐life data

2019 ◽  
pp. e12975 ◽  
Author(s):  
A. Salman ◽  
G. Demir ◽  
N. Bekiroglu
Keyword(s):  
Quality Of Life ◽  
Real Life ◽  
Chronic Spontaneous Urticaria ◽  
Life Data ◽  
Real Life Data ◽  
The Impact

scholarly journals 1533P Real-life data from the platform for outcome, quality of life and translational research on pancreatic cancer - PARAGON

2020 ◽  
Vol 31 ◽  
pp. S943
Author(s):  
S-E. Al-Batran ◽  
W. Blau ◽  
R. Liersch ◽  
S. Mahlmann ◽  
A. Lueck ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pancreatic Cancer ◽  
Translational Research ◽  
Real Life ◽  
Outcome Quality ◽  
Life Data ◽  
Real Life Data

scholarly journals The Use of HSQoL-24 in an Assessment of Quality-of-Life Impairment among Hidradenitis Suppurativa Patients: First Look at Real-Life Data

2021 ◽  
Vol 10 (22) ◽  
pp. 5446
Author(s):  
Piotr K. Krajewski ◽  
Servando E. Marrón ◽  
Manuel Gomez-Barrera ◽  
Lucía Tomas-Aragones ◽  
Yolanda Gilaberte-Calzada ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Hidradenitis Suppurativa ◽  
Disease Onset ◽  
Real Life ◽  
Clinical Settings ◽  
Life Data ◽  
Real Life Data ◽  
Inflammatory Skin Disorder ◽  
Family House

Hidradenitis suppurativa (HS) is a chronic inflammatory skin disorder with well-documented effects on patients’ quality of life (QoL). The aim of this study was to evaluate the QoL of patients with HS via the use of a newly developed questionnaire: Hidradenitis Suppurativa Quality of Life-24 (HSQoL-24). This study was performed on a population of 342 HS patients. Their QoL was assessed via the HSQoL-24 questionnaire. The perceived impairment of QoL due to HS in the studied group was considered to be serious (mean HSQoL-24 score: 58.3 ± 21.0 points). Women tended to experience a significantly higher impact from the disease than men (61.6 ± 19.2 points vs. 51.1 ± 23.1 points, p < 0.001). The HS severity had an effect on the perceived QoL, with statistically significant differences being evident between the self-assessed HS severity groups. The level of QoL impairment correlated positively with the number of affected body areas (r = 0.285, p < 0.001) and the duration of the disease (r = 0.173, p = 0.001), while the patients’ age at disease onset correlated negatively with the HSQoL-24 global score (r = −0.182, p = 0.001). Patients living in their family house scored higher than other groups. The least affected were patients who lived alone. The study shows that the HSQoL-24 questionnaire is a reliable, HS-specific tool for measuring the QoL among patients with HS in real-life clinical settings.

Pruritus strongly reduces quality of life in PBC patients – real life data from a large national survey

2018 ◽  
Vol 68 ◽  
pp. S216 ◽  
Author(s):  
S. Hönig ◽  
B. Herder ◽  
A. Kautz ◽  
C. Trautwein ◽  
A. Kremer
Keyword(s):  
Quality Of Life ◽  
National Survey ◽  
Real Life ◽  
Life Data ◽  
Real Life Data

OP21 Enhancing Capability: Patient Impact In Ultra-Orphan Conditions

2019 ◽  
Vol 35 (S1) ◽  
pp. 4-4
Author(s):  
Amanda Tonkinson ◽  
Heidi Livingstone ◽  
Sheela Upadhyaya ◽  
Gillian Leng
Keyword(s):  
Quality Of Life ◽  
Public Involvement ◽  
Committee Member ◽  
Real Life ◽  
Life Data ◽  
Life Years ◽  
Patient Groups ◽  
The Impact ◽  
Insight Into

IntroductionWritten evidence is submitted to the National Institute for Heath and Care Excellence (NICE) by patient organisations for all ultra-orphan evaluations. To enhance the capability of patient involvement at NICE and to further develop understanding of how patient generated evidence and input in ultra-orphan conditions can support the Health Technology Assessment (HTA) agencies beyond 2020, the Public Involvement Programme systematically reviews the impact the evidence has on committee decision making.MethodsThis study captured data from September 2017 to August 2018 for seven ultra-orphan evaluations. A paper questionnaire was given to each committee member to complete for each evaluation and entered in to an online system for analysis. Findings were used to inform the committee views which were highlighted in feedback letters to the patient groups. The questions included: how much impact and what sort of impact the patients had; both qualitative and quantitative data; and, a specific question on clarification of quality of life dataResultsWe obtained 83 responses showing the submissions: had a moderately high or high impact; gave the committee particular insight into quality of life data not provided elsewhere; provided new evidence; interpret the data from other sources; and, demonstrated consistency with other sourcesConclusionsPatient evidence is particularly useful for ultra-orphan conditions where other forms of evidence are limited. Patients can provide a unique insight into the burden of disease, the patient population, any updates of treatments and the impact on patient and carers. They provide real life data to the committee including information that standard Quality Adjusted Life Years measures do not. Evidence varied by condition with impact themes highlighting the effects on patient and carers including fear, stress and anxiety. The examples are recorded, updated annually and will be shared with national patient groups and offered internationally through the HTAi Interest Group on Patient and Citizen Involvement.

PH-0272 Prospective quality of life in 682 lung cancer patients treated with radiotherapy: real life data

2021 ◽  
Vol 161 ◽  
pp. S181-S182
Author(s):  
M. Nies ◽  
R. Wijsman ◽  
O. Chouvalova ◽  
F.J. Ubbels ◽  
H.J. Elzinga ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lung Cancer ◽  
Cancer Patients ◽  
Real Life ◽  
Lung Cancer Patients ◽  
Life Data ◽  
Real Life Data

Mining Calendar-based Periodic Patterns from Nonbinary Transactions

2014 ◽  
Vol 23 (3) ◽  
pp. 277-291 ◽  
Author(s):  
Jhimli Adhikari
Keyword(s):  
Real Life ◽  
Frequent Itemsets ◽  
Periodic Pattern ◽  
Temporal Data ◽  
Certainty Factor ◽  
Periodic Patterns ◽  
Business Decisions ◽  
Life Data ◽  
Real Life Data

AbstractA large class of problems deals with temporal data. Identifying temporal patterns in these datasets is a natural as well as an important task. In recent times, researchers have reported an algorithm for finding calendar-based periodic pattern in time-stamped data without considering the purchased quantities of the items. However, most of the real-life databases are nonbinary, and therefore, exploring various calendar-based patterns (yearly, monthly, weekly, daily) with their purchased quantities may discover information useful to improve the quality of business decisions. In this article, a technique is proposed to extract calendar-based periodic patterns from nonbinary transactions. In this connection, the concept of certainty factor has been introduced by incorporating transaction frequency for overlapped intervals. Algorithms have been designed to mine frequent itemsets along with intervals and quantity. In addition to that, we have designed an algorithm to find the periodicity of the pattern. The algorithm is tested with real-life data, and the results are given.

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