People with multiple sclerosis report significantly worse symptoms and health related quality of life than the US general population as measured by PROMIS and NeuroQoL outcome measures

2018 ◽  
Vol 11 (1) ◽  
pp. 99-107 ◽  
Author(s):  
Dagmar Amtmann ◽  
Alyssa M. Bamer ◽  
Jiseon Kim ◽  
Hyewon Chung ◽  
Rana Salem
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
General Population ◽  
Outcome Measures ◽  
Health Related Quality ◽  
The Us ◽  
Related Quality ◽  
Health Related

scholarly journals 509 Health-Related Quality of Life in Narcolepsy: A Systematic Review and Meta-Analysis

SLEEP ◽  
2021 ◽  
Vol 44 (Supplement_2) ◽  
pp. A200-A201
Author(s):  
Ragy Tadrous ◽  
Deirdre O’Rourke ◽  
Julie Broderick ◽  
David Mockler
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Systematic Review ◽  
General Population ◽  
Meta Analysis ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Abstract Introduction Narcolepsy is a neurological condition that has been associated with considerable detriment to daily life including impaired quality of life, occupational and academic difficulties and adversely affected social and personal relationships. To date, there has been no systematic analysis of the literature regarding health-related quality of life (HRQoL) in Narcolepsy. This systematic review aimed to examine the impact of narcolepsy on HRQoL, measured through standardised HRQoL questionnaires such as the Short Form 36 (SF36). Methods Medline, Embase, Cinahl and Web of Science were searched for studies which investigated HRQoL in adults with narcolepsy. Studies were reviewed independently by two reviewers, and a random-effects meta-analysis was performed. The methodological quality of the included studies was assessed using a modified version of the Joanna Briggs Institute Checklist for Analytical Cross Sectional Studies tool. The impact of study variables and characteristics on HRQoL was assessed using Spearman’s Correlation analyses with adjusted r2 values. Results A total of 30 studies were eligible for inclusion in the review. Additionally, meta-analyses were conducted for the SF36 and the EQ5D. The SF36 meta-analysis identified that the pooled mean scores for the Physical Component Summary (45.91) were less affected than the Mental Component Summary (42.98). The HRQoL of people with narcolepsy was compared to general population norms (US, UK, France and Norway) and to people with chronic diseases including multiple sclerosis, diabetes, and epilepsy. Conclusion People with narcolepsy report significant impairments in HRQoL when compared to the general population and other chronic health conditions including epilepsy, multiple sclerosis, diabetes and hypertension, especially concerning their mental wellbeing. Further research is warranted to identify the longitudinal effects of narcolepsy on HRQoL and to develop a narcolepsy-specific HRQoL tool. Support (if any) This review was completed as part of Mr Ragy Tadrous’ Master of Science (MSc) degree in Trinity College Dublin. This degree was co-sponsored by the Physiotherapy Department in St. James’s Hospital, Dublin.

Long-Term Effectiveness of Fingolimod for Multiple Sclerosis in a Real-World Clinical Setting

2021 ◽  
pp. 1-6
Author(s):  
Cihat Uzunköprü ◽  
Yesim Beckmann ◽  
Sabiha Türe
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Real Life ◽  
Life Assessment ◽  
Health Related Quality ◽  
Serious Adverse Events ◽  
Related Quality ◽  
Health Related

<b><i>Introduction:</i></b> The primary aim of the present study was to evaluate the long-term efficacy of fingolimod in patients with multiple sclerosis (MS); secondary aims were to describe the safety of fingolimod with the evaluation of treatment satisfaction and impact on the quality of life in real life. <b><i>Methods:</i></b> We collected clinical, demographical, neuroradiological, and treatment data, including pre- and posttreatment status health-related quality of life from 286 MS patients consecutively treated with fingolimod. Clinical assessment was based on the Expanded Disability Status Scale (EDSS), and quality of life assessment was performed with MS-related quality of life inventory (MSQOLI). The data were recorded at baseline and every 6 months for 2 years. <b><i>Results:</i></b> One hundred and fourteen males and 172 females were enrolled. The annualized relapse rate and EDSS showed a statistically significant reduction during the observation period (<i>p</i> &#x3c; 0.001). The patients also demonstrated substantial improvements in magnetic resonance imaging (MRI) outcomes (<i>p</i> &#x3c; 0.001). Health-related quality of life scores improved significantly between baseline and 24-month visit (<i>p</i> &#x3c; 0.001). No serious adverse events occurred. <b><i>Conclusion:</i></b> In our cohort, fingolimod treatment was associated with reduced relapse, MRI activity, and improved EDSS and MSQOLI scores. Additionally, fingolimod has been able to maintain its effectiveness over a considerable long period of treatment.

scholarly journals Health-Related Quality of Life in Adrenocortical Carcinoma

Cancers ◽  
2019 ◽  
Vol 11 (10) ◽  
pp. 1500 ◽  
Author(s):  
Rebecca V. Steenaard ◽  
Laura A. Michon ◽  
Harm R. Haak
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Adrenocortical Carcinoma ◽  
Treatment Options ◽  
Clinical Aspects ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Insight into the health-related quality of life (HRQoL) impact of adrenocortical carcinoma (ACC) is important. The disease and its treatment options potentially have an impact on HRQoL. For patients with limited survival, HRQoL research is of utmost importance. We will therefore provide an overview of HRQoL studies in patients with ACC. We found six studies that measured HRQoL in 323 patients with ACC (3 cross-sectional, 1 cohort, 2 trials), all indicating a reduced HRQoL compared to the general population. The FIRMACT trial found that HRQoL of patients with ACC was reduced compared to the general population, and that chemotherapy-mitotane further reduced HRQoL even though survival improved. Clinical aspects of the disease, including cortisol and aldosterone production and adrenal insufficiency have shown great impact on HRQoL in benign disease, even after the recovery of hormonal status. However, the impact of malignant adrenal disease and treatment options on HRQoL including adrenalectomy, radiotherapy, mitotane therapy, and chemotherapy have not been sufficiently studied in patients with ACC. Although the number of HRQoL studies in patients with ACC is limited, the existing literature does indicate that ACC has a large impact on patients’ HRQoL, with disease specific aspects. Further HRQoL research in patients with ACC is essential to improve patient-centered care, preferably by using an ACC-specific HRQoL questionnaire.

Effects of BG-12 (dimethyl fumarate) on health-related quality of life in patients with relapsing–remitting multiple sclerosis: findings from the CONFIRM study

2013 ◽  
Vol 20 (2) ◽  
pp. 253-257 ◽  
Author(s):  
Mariko Kita ◽  
Robert J Fox ◽  
J Theodore Phillips ◽  
Michael Hutchinson ◽  
Eva Havrdova ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Short Form ◽  
Dimethyl Fumarate ◽  
Phase Iii ◽  
Health Related Quality ◽  
Relapsing Remitting ◽  
Related Quality ◽  
Health Related

Multiple sclerosis (MS) has a significant impact on health-related quality of life (HRQoL) with symptoms adversely affecting many aspects of everyday living. BG-12 (dimethyl fumarate) demonstrated significant efficacy in the phase III studies DEFINE and CONFIRM in patients with relapsing–remitting MS. In CONFIRM, HRQoL was worse in patients with greater disability at baseline, and who relapsed during the study, and improved with BG-12 treatment. Mean Short Form-36 Physical Component Summary scores for BG-12 increased over 2 years and scores for placebo decreased. Coupled with clinical and neuroradiological benefits, these HRQoL results further support BG-12 as an effective oral treatment for relapsing MS.

Patient Reported Outcome Measures of Health-Related Quality of Life and Asthenia after Thyroidectomy

2021 ◽  
Vol 264 ◽  
pp. 394-401
Author(s):  
Mary Kate Luddy ◽  
Rachel Vetter ◽  
Jessica Shank ◽  
Whitney Goldner ◽  
Anery Patel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Effects of aquatic physiotherapy on Health Related Quality of Life (HRQOL): perceptions of people with multiple sclerosis

Physiotherapy ◽  
2016 ◽  
Vol 102 ◽  
pp. e226-e227
Author(s):  
S.-J. Ryan ◽  
A. Marcar ◽  
P. Stone ◽  
K. Garikipati ◽  
R. Kuisma ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related
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