744 The Impact of Ulcerative Colitis on Quality of Life and Productivity Across Europe: A Burden of Illness Study

2019 ◽  
Vol 114 (1) ◽  
pp. S436-S437
Author(s):  
Jimmy K. Limdi ◽  
Alison Rose ◽  
Declan Noone ◽  
Alan J. Lobo ◽  
Helen Terry ◽  
...  
Gut ◽  
2012 ◽  
Vol 61 (Suppl 2) ◽  
pp. A237.2-A237 ◽  
Author(s):  
P Swinburn ◽  
H Elwick ◽  
K Bean ◽  
A Curry ◽  
S Patel ◽  
...  

2017 ◽  
Vol 23 (2_suppl) ◽  
pp. 4-16 ◽  
Author(s):  
Gisela Kobelt ◽  
Jennifer Eriksson ◽  
Glenn Phillips ◽  
Jenny Berg

Introduction: This article describes the methods used to perform this large European-wide burden-of-illness study on multiple sclerosis (MS) using individual patient data. Methods: The study collected all MS-related resource consumption, workforce participation, prevalent disease symptoms and health-related quality of life (HRQoL). Patients were recruited by national patient associations and, after informed consent, completed a specific questionnaire either on-line or on paper. Analyses were performed by country as well as for the study overall. Costs were estimated from the societal perspective, using publicly available unit costs and reported in national currencies and in EUR 2015 adjusted for purchasing power parity. The results are reported by disease severity groups according to self-assessed Expanded Disability Status Scale (EDSS) (mild, moderate, severe) and by EDSS point to highlight the development of costs as disability progresses. Results: A total of 16,808 patients in 16 countries participated in the study: Austria, Belgium, Denmark, Czech Republic, France, Germany, Hungary, Italy, the Netherlands, Poland, Portugal, Russia, Spain, Sweden, Switzerland and the United Kingdom. Conclusion: This study, endorsed by the European Platform of MS Societies, provides up-to-date information on costs and expands the previously available information on HRQoL and symptoms.


Author(s):  
G.P. Rice ◽  
J. Oger ◽  
P. Duquette ◽  
G.S. Francis ◽  
M. Bélanger ◽  
...  

Background:The Canadian Burden of Illness Study Group reported that the quality of life (QoL) of multiple sclerosis (MS) patients falls drastically, early in the disease. With disability progression, the physical functioning scales of the Short Form 36 (SF-36) showed further decreases in QoL. The objective of this study is to describe the QoL of MS patients treated with interferon beta-1b (IFNB-1b) and to compare it to the QoL observed in a group of patients who had not been treated with IFNB-1b.Methods:Treated patients were prospectively recruited and were seen at their regular visit to the MS clinic. They self-completed the SF-36 questionnaire and their QoL was described and retrospectively compared to that of historical controls.Results:When IFNB-1b treated patients were compared to historical control patients with the same relapsing forms of MS, the treated patients with an Expanded Disability Status Scale (EDSS) score lower than 3.0 had a significantly better QoL. This was significant for four of the eight SF-36 domains: Physical Function (+22%, p=0.0102), Role-Physical (+100%, p=0.0022), General Health (+27%, p=0.0070) and Social Function (+19%, p=0.0287). The average QoL difference was 8% in the EDSS 3.0-6.0 group and 10% in the EDSS >6 group.Conclusion:Patients with relapsing forms of MS treated with IFNB-1b have better QoL than patients who are not treated, especially those with an EDSS < 3.0.


2019 ◽  
Vol 12 ◽  
pp. 175628641983224 ◽  
Author(s):  
Christiane Schneider-Gold ◽  
Tim Hagenacker ◽  
Nico Melzer ◽  
Tobias Ruck

Myasthenia gravis (MG) is an autoantibody-mediated disease that compromises the acetylcholine receptors or associated structures of the postsynaptic membrane of the neuromuscular junction. This leads to impaired neuromuscular transmission and subsequent fluctuating fatigability and weakness of ocular, bulbar, and limb skeletal muscles. Over the past few decades, there have been significant advances in our understanding of the disease pathophysiology and improvements in prognosis due to intensive care medicine and immunomodulation. Despite this, an estimated 10–20% of patients with MG do not achieve an adequate response, are intolerant to conventional treatment, or require chronic treatment with intravenous immunoglobulins or plasma separation procedures. Such patients are regarded as having MG that is ‘refractory’ to treatment and may represent a distinct clinical subgroup. Because the majority of patients with MG have well-controlled disease, the burden of illness in the minority with refractory disease is poorly understood and may be underestimated. However, clinically these patients are liable to experience extreme fatigue, considerable disability owing to uncontrolled symptoms, and frequent myasthenic crises and hospitalizations. Both acute adverse effects and an increased risk of comorbidity from treatment regimens may contribute to reduced quality of life. As yet, little is known concerning the impact of refractory MG on mental health and health-related quality of life. This review aims to highlight the burden of disease and unmet needs in patients with refractory MG.


1998 ◽  
Vol 4 (6) ◽  
pp. E9 ◽  
Author(s):  
Terry Bunston ◽  
Deborah Mings ◽  
Normand Laperriere ◽  
Jacquey Malcolm ◽  
Dorothy Williams

The diagnosis of cancer of the central nervous system (CNS) is often the diagnosis of an incurable, progressive disease with devastating effects on the physical, psychosocial, and cognitive functioning of patients. Because many of the treatment options are noncurative in nature, issues related to quality and quantity of life become paramount. The purpose of the authors' research was to explore the prevalence of psychosocial needs in this cancer population and to determine whether these needs and their resolution impact on quality of life (QOL). Telephone interviews were conducted with 75 patients in whom primary CNS cancer was diagnosed and who were able to pass the Mini-Mental Health Status Examination. Analysis of results indicated that the majority of patients (97.3%) had at least one concern; concerns over treatment side effects, controlling uncertainty, having a meaningful existence, self and body image, and family concerns were among the five most frequently cited need domains. Most patients (91.8%) received help. However, 75.3% reported needing additional help. The number of needs reported and the severity of fatigue most significantly impacted QOL. The study identified the needs and experiences of the patient with CNS cancer. Quality of life and needs assessment information can be used to screen patients for distress and to measure the outcome of medical and psychosocial care and ultimately to ease the burden of illness.


Nutrients ◽  
2021 ◽  
Vol 13 (2) ◽  
pp. 656
Author(s):  
Amritpal Dhaliwal ◽  
Jonathan I. Quinlan ◽  
Kellie Overthrow ◽  
Carolyn Greig ◽  
Janet M. Lord ◽  
...  

Malnutrition is a common condition encountered in patients with inflammatory bowel disease (IBD) and is often associated with sarcopenia (the reduction of muscle mass and strength) which is an ever-growing consideration in chronic diseases. Recent data suggest the prevalence of sarcopenia is 52% and 37% in Crohn’s disease and ulcerative colitis, respectively, however it is challenging to fully appreciate the prevalence of sarcopenia in IBD. Sarcopenia is an important consideration in the management of IBD, including the impact on quality of life, prognostication, and treatment such as surgical interventions, biologics and immunomodulators. There is evolving research in many chronic inflammatory states, such as chronic liver disease and rheumatoid arthritis, whereby interventions have begun to be developed to counteract sarcopenia. The purpose of this review is to evaluate the current literature regarding the impact of sarcopenia in the management of IBD, from mechanistic drivers through to assessment and management.


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