Pain is not the major determinant of quality of life in fibromyalgia: results from a retrospective “real world” data analysis of fibromyalgia patients

2021 ◽  
Author(s):  
Martin Offenbaecher ◽  
Niko Kohls ◽  
Thomas Ewert ◽  
Claudia Sigl ◽  
Robin Hieblinger ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Data Analysis ◽  
Real World ◽  
Major Determinant ◽  
Real World Data ◽  
World Data

scholarly journals Breast cancer patients’ quality of life: Real-world data

2019 ◽  
Vol 30 ◽  
pp. v744-v745
Author(s):  
T. Kosmidis ◽  
B. Athanasakou ◽  
P.A. Kosmidis
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Cancer Patients ◽  
Real World ◽  
Breast Cancer Patients ◽  
Real World Data ◽  
World Data

scholarly journals Health Related Quality of Life-Outcome in National Care - Real World Data from the German Psoriasis-Registry “Psobest”

2013 ◽  
Vol 16 (7) ◽  
pp. A511
Author(s):  
S. Purwins ◽  
C. Spehr ◽  
M. Augustin ◽  
M.A. Radtke ◽  
K. Reich ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Real World ◽  
Health Related Quality ◽  
Real World Data ◽  
World Data ◽  
Related Quality ◽  
Health Related

scholarly journals Impact of Radiotherapy Technique on Quality of Life in Head and Neck Cancer Patients, in Brazil: Prospective Real-World Data Study

2019 ◽  
Vol 105 (1) ◽  
pp. E382
Author(s):  
M.A. Santos ◽  
L.F. Oliveira e Silva ◽  
H.F. Kohler ◽  
O. Curioni ◽  
R.D.A. Vilela ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Head And Neck Cancer ◽  
Head And Neck ◽  
Cancer Patients ◽  
Neck Cancer ◽  
Real World ◽  
Real World Data ◽  
World Data

scholarly journals Lidocaine 700 mg medicated plaster for postherpetic neuralgia: real-world data from the German Pain e-Registry

2021 ◽  
Author(s):  
Michael A Überall ◽  
Mariëlle Eerdekens ◽  
Els Hollanders ◽  
Irmgard Bösl ◽  
Ingo Sabatschus
Keyword(s):  
Quality Of Life ◽  
Adverse Events ◽  
Medical Care ◽  
Real World ◽  
Postherpetic Neuralgia ◽  
First Line ◽  
Real World Data ◽  
World Data ◽  
Routine Medical Care

Aim: To provide real-world evidence for the effectiveness and tolerability of lidocaine 700 mg medicated plaster (LMP) compared with oral systemic first-line medications (OSM) in postherpetic neuralgia treatment. Patients & methods: Retrospective cohort study in patients refractory to at least one recommended OSM (single drug or a combination of drugs) using anonymized routine medical care data from the German Pain e-Registry. A matched pair approach using propensity score matching was employed. Results: A total of 1711 data sets of postherpetic neuralgia patients were identified per treatment group. The majority (>60%) had experienced pain for more than a year and reported a high burden of pain and reduced quality of life. Six months of LMP treatment provided significantly greater pain reductions, improvements in pain-related impairments and quality of life than OSM treatment (p < 0.001 for all parameters). Drug-related adverse events and treatment discontinuation due to drug-related adverse events also occurred less frequently under LMP treatment (p < 0.001). Conclusion: These real-world data confirm the effectiveness and good tolerability of LMP under routine medical care. The treatment was significantly more effective when compared with first-line oral systemic medications.

scholarly journals Use of Social Media in the Assessment of Relative Effectiveness: Explorative Review With Examples From Oncology (Preprint)

2017 ◽  
Author(s):  
Rachel R.J. Kalf ◽  
Amr Makady ◽  
Renske M.T. ten Ham ◽  
Kim Meijboom ◽  
Wim G. Goettsch ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Media ◽  
Adverse Events ◽  
Real World ◽  
Relative Effectiveness ◽  
Health Data ◽  
Real World Data ◽  
World Data ◽  
Effectiveness Assessment

BACKGROUND An element of health technology assessment constitutes assessing the clinical effectiveness of drugs, generally called relative effectiveness assessment. Little real-world evidence is available directly after market access, therefore randomized controlled trials are used to obtain information for relative effectiveness assessment. However, there is growing interest in using real-world data for relative effectiveness assessment. Social media may provide a source of real-world data. OBJECTIVE We assessed the extent to which social media-generated health data has provided insights for relative effectiveness assessment. METHODS An explorative literature review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines to identify examples in oncology where health data were collected using social media. Scientific and grey literature published between January 2010 and June 2016 was identified by four reviewers, who independently screened studies for eligibility and extracted data. A descriptive qualitative analysis was performed. RESULTS Of 1032 articles identified, eight were included: four articles identified adverse events in response to cancer treatment, three articles disseminated quality of life surveys, and one study assessed the occurrence of disease-specific symptoms. Several strengths of social media-generated health data were highlighted in the articles, such as efficient collection of patient experiences and recruiting patients with rare diseases. Conversely, limitations included validation of authenticity and presence of information and selection bias. CONCLUSIONS Social media may provide a potential source of real-world data for relative effectiveness assessment, particularly on aspects such as adverse events, symptom occurrence, quality of life, and adherence behavior. This potential has not yet been fully realized and the degree of usefulness for relative effectiveness assessment should be further explored.

scholarly journals Insight into the Quality of Life of Patients with Ankylosing Spondylitis: Real-World Data from a US-Based Life Impact Survey

2019 ◽  
Vol 6 (3) ◽  
pp. 353-367 ◽  
Author(s):  
James T. Rosenbaum ◽  
Lisa Pisenti ◽  
Yujin Park ◽  
Richard A. Howard
Keyword(s):  
Quality Of Life ◽  
Ankylosing Spondylitis ◽  
Real World ◽  
Real World Data ◽  
World Data ◽  
Life Impact ◽  
Insight Into

P1-666: REAL WORLD DATA IN AUSTRALIA DEMONSTRATES POOR QUALITY OF LIFE IS LINKED TO DETERIORATION IN COGNITIVE FUNCTION

2006 ◽  
Vol 14 (7S_Part_11) ◽  
pp. P598-P598
Author(s):  
Eddie Jones ◽  
Rezaul Karim Khandker ◽  
Christopher M. Black ◽  
James Pike ◽  
Joseph Husbands ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cognitive Function ◽  
Real World ◽  
Poor Quality ◽  
Real World Data ◽  
World Data

scholarly journals Elosulfase alfa in the treatment of mucopolysaccharidosis type IVA: insights from the first managed access agreement

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Bob Stevens ◽  
Tom Kenny ◽  
Sophie Thomas ◽  
Alexandra Morrison ◽  
James Jarrett ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Real World ◽  
Mucopolysaccharidosis Type ◽  
Real World Data ◽  
World Data ◽  
Mps Iva ◽  
Mucopolysaccharidosis Type Iva ◽  
Elosulfase Alfa

AbstractManaged access agreements provide a crucial mechanism whereby real-world data can be collected systematically to reduce uncertainty around available clinical and economic data, whilst providing the opportunity to identify patient sub-populations who are most likely to benefit from a new treatment. This manuscript aims to share learnings from the first managed access agreement, which was initiated following positive conditional approval in 2015 from the National Institute for Health and Care Excellence (NICE) for elosulfase alfa, an enzyme replacement therapy for the treatment of mucopolysaccharidosis type IVA (MPS IVA). This managed access agreement enabled the collection of comprehensive real-world data for patients with MPS IVA, with results demonstrating that patients starting elosulfase alfa treatment showed gains similar to those seen in the pivotal trial for outcomes including endurance, respiratory and cardiac function, pain, quality of life measures and urinary keratan sulfate levels. In addition, former trial patients continued to see benefits in both clinical assessments and quality of life/activities of daily living nine years after beginning treatment. Key strengths of the process included recruitment of a high proportion of MPS IVA patients treated in England (72/89 known eligible patients) with a wide range of ages (2–58 years). Participation of a patient organisation (the MPS society) ensured that the patient voice was present throughout the process, whilst a contract research organisation (Rare Disease Research Partners) ensured that patients were represented when interpreting agreement criteria and during patient assessment meetings. Longer-term follow-up will be required for several MPS IVA outcomes (e.g. skeletal measures) to further reduce uncertainty, and continued follow-up of patients who had stopped treatment was found to be challenging. The burden associated with this managed access agreement was found to be high for patients, physicians, patient organisations, NHS England and the manufacturer, therefore costs and benefits of future agreements should be considered carefully before initiation. Through evaluation of the strengths and limitations of this process, it is hoped that learnings from this managed access agreement can be used to inform future agreements.

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