The use of quality of life measures in multiple sclerosis research

2003 ◽  
Vol 9 (1) ◽  
pp. 63-72 ◽  
Author(s):  
M W Nortvedt ◽  
T Riise
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Disease Activity ◽  
Clinical Scales ◽  
Additional Information ◽  
Quality Of Life Measures ◽  
Quality Of Life Questionnaires ◽  
Study Designs ◽  
The Impact

Q uality of life research contributes knowledge essential to the health and healthcare of multiple sclerosis (MS) patients. This article reviews 83 MS studies in English that have presented data on quality of life. The studies may be classified into three categories, according to the application and the main focus: 1) evaluating the development and validity of quality of life questionnaires and clinical scales (n-27); 2) evaluating factors that might influence the quality of life or comparing the quality of life among various groups (n-37); and 3) using quality of life questionnaires as outcome measures in medical trials and other interventions (n-19). The studies have shown that quality of life questionnaires more broadly measure the impact of MS than do the most frequently used measures of disease activity and effects. Using quality of life measures provides additional information in evaluating the effects of treatment and in studying the development of the disease. Such information is crucial in planning interventions for MS patients. A challenge in this field is to improve the study designs, including reaching some agreement on how to measure the quality of life.

scholarly journals P181 Long-term improvement in axial spondyloarthritis clinical outcomes following 2-weeks of intensive education and rehabilitation: results from the Bath residential rehabilitation programme

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Rosie Barnett ◽  
Anita McGrogan ◽  
Matthew Young ◽  
Charlotte Cavill ◽  
Mandy Freeth ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Disease Activity ◽  
Axial Spondyloarthritis ◽  
Rehabilitation Programme ◽  
Spinal Mobility ◽  
The Impact

Abstract Background/Aims  Axial spondyloarthritis (axSpA) is a chronic rheumatic condition, characterised by inflammatory back pain - often associated with impaired function and mobility, sleep disturbance, fatigue, and reduced quality of life. Despite the vast advances in pharmacological treatments for axSpA over the last few decades, physical activity and rehabilitation remain vital for effective disease management. At the Royal National Hospital for Rheumatic Diseases in Bath (RNHRD), the 2-week inpatient axSpA rehabilitation programme has been integral to axSpA care since the 1970’s. Prior research has demonstrated significant short-term improvements in spinal mobility (BASMI), function (BASFI) and disease activity (BASDAI) following course attendance. However, the long-term outcomes are yet to be evaluated in this unique cohort. Methods  Since the early 1990’s, clinical measures of spinal mobility, function and disease activity have been routinely collected at the RNHRD at all clinical appointments through administration of the BASMI, BASFI and BASDAI, respectively. Dates of attending the axSpA course and standard clinical and treatment follow-up data were also collected. Multiple linear regression models were used to investigate the impact of course attendance on final reported BASMI, BASDAI and BASFI scores (final score=most recent). Length of follow-up was defined as time between first and last recorded BASMI. Results  Of the 203 patients within the Bath SPARC200 cohort, 77.8% (158/203) had attended at least one rehabilitation course throughout follow-up. 70.0% (140/203) of patients were male. The mean duration of follow-up was 13.5 years (range 0-35 years); 28.1% (57/203) of individuals with 20+ years of follow-up. Course attendance (yes versus no) significantly reduced final BASMI score by 0.84 (p = 0.001, 95%CI -1.31 to -0.37) and final BASDAI score by 0.74 (p = 0.018, 95%CI -1.34 to -0.13). Although course attendance reduced final BASFI by 0.45 (95%CI -1.17 to 0.28), this relationship did not reach significance (p = 0.225). Whilst minimally clinically important difference (MCID) is, to our knowledge, yet to be defined for BASMI, MCIDs were achieved long-term for both BASDAI and BASFI - defined by van der Heijde and colleagues in 2016 as 0.7 and 0.4 for BASDAI and BASFI, respectively. Conclusion  These results provide novel evidence to support the integral role of education, physical activity and rehabilitation in the management of axSpA. Future work should investigate additional outcomes of critical importance to patients and clinicians, such as fatigue, quality of life and work productivity. Furthermore, a greater understanding of the factors that confound these outcomes may provide insights into those patients who may most benefit from attending a 2-week rehabilitation course. In addition to facilitating identification of those patients who may require additional clinical support. Disclosure  R. Barnett: None. A. McGrogan: None. M. Young: None. C. Cavill: None. M. Freeth: None. R. Sengupta: Honoraria; Biogen, Celgene, AbbVie, Novartis, MSD. Grants/research support; Novartis, UCB.

The impact of sexual dysfunction on the quality of life measured by MSQoL-54 in patients with multiple sclerosis

2008 ◽  
Vol 14 (8) ◽  
pp. 1131-1136 ◽  
Author(s):  
DK Tepavcevic ◽  
J Kostic ◽  
ID Basuroski ◽  
N Stojsavljevic ◽  
T Pekmezovic ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Sexual Dysfunction ◽  
Sexual Function ◽  
Health Distress ◽  
Pain Subscale ◽  
Related Quality ◽  
Vaginal Lubrication ◽  
The Impact

Objective Sexual dysfunction (SD) is a common but often overlooked symptom in multiple sclerosis (MS). The aim of this study was to estimate the frequency, type, and intensity of SD in our patients with MS and to investigate its influence on all the domains of quality of life. Methods The study population comprised a cohort of 109 patients with MS (McDonald's criteria, 2001). SD was quantified by a Szasz sexual functioning scale. Health-related quality of life was measured by a disease-specific instrument MSQoL-54 (Serbian version). Results The presence of at least one symptom of SD was found in about 84% of the men and in 85% of the women. The main complaints in women were reduced libido, difficulties in achieving orgasm, and decreased vaginal lubrication; in men, the main complaints were reduced libido, incomplete erections, and premature ejaculation. In women, statistically significant negative correlations between the presence and level of SD and quality of life domains were reached for all subscales ( P < 0.01), except for the Pain subscale ( P = 0.112). In men, negative correlations were also observed for all domains, but they were statistically significant for physical health, physical role limitations, social function, health distress, sexual function, and sexual function satisfaction ( P < 0.01). We found that the presence of all the analyzed types of sexual problems statistically significantly lowered scores on the sexual function and the sexual function satisfaction subscales in both men and women ( P < 0.01). The most prominent impact on both domains was observed for the total loss of erection in men and for anorgasmia in women. Conclusions Our results reveal that frequent occurrence of SD in MS patients prominently affects all aspects of their quality of life.

scholarly journals Positive impact of cladribine on quality of life in people with relapsing multiple sclerosis

2017 ◽  
Vol 24 (11) ◽  
pp. 1461-1468 ◽  
Author(s):  
Dayo Afolabi ◽  
Christo Albor ◽  
Lukasz Zalewski ◽  
Dan R Altmann ◽  
David Baker ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Positive Impact ◽  
Rank Correlation ◽  
Phase Iii ◽  
European Medicines Agency ◽  
Total N ◽  
The Impact ◽  
Relapsing Multiple Sclerosis

Background: A number of elements of the pivotal ‘cladribine tablets treating multiple sclerosis orally’ (CLARITY) trial have remained unpublished. Objective: To report the impact of cladribine on health-related quality of life (QoL) in people with relapsing multiple sclerosis (pwRMS). Methods: QoL data from the phase III trial of two different doses (3.5 and 5.25 mg/kg) of oral cladribine in pwRMS were acquired from the European Medicines Agency through Freedom of Information. Spearman’s rank correlation was used to analyse the relationship between baseline QoL scores and baseline Expanded Disability Status Scale (EDSS) scores. Responses of the Euro Quality of Life 5 Dimensions (EQ-5D) and Multiple Sclerosis Quality of Life-54 (MSQOL-54) questionnaires were compared between treatment and control groups using univariate analyses of covariance. Results: In total, n = 5148 EQ-5D responses and n = 894 MSQOL-54 physical, mental health and dimension scores were extracted. Baseline EQ-5D indices correlated with EDSS scores. After 2 years, pwRMS taking 3.5 ( p = .001) and 5.25 mg/kg ( p = .022) reported significantly improved EQ-5D index scores compared with placebo. Positive, yet non-significant, differences were detected in MSQOL-54 scores between cladribine and placebo. Conclusion: Analysis of the CLARITY dataset suggests that, over and above its established clinical efficacy, cladribine leads to improved QoL over 96 weeks. ClinicalTrials.gov identifier: NCT00213135.

scholarly journals Health-Related Quality of Life of Patients with Multiple Sclerosis in Oman – A CrossSectional Study

2021 ◽  
Author(s):  
Jansirani Natarajan ◽  
Mickael Antoine Joseph ◽  
Abdullah Al Asmi ◽  
Gerald Amandu Matua ◽  
Jaber Al Khabouri ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Disease Process ◽  
Well Being ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Disease Specific

Objectives: Multiple sclerosis is a disabling neurological disorder with significant negative effects on patients’ quality of life. Despite the increased prevalence of multiple sclerosis in Arabian Gulf countries in recent years, no study has assessed the impact of multiple sclerosis on the healthrelated quality of life of Omani patients. Therefore, the objectives of the current study was to assess the impact of multiple sclerosis on the health-related quality of life of Omani patients using the validated disease-specific self-administered MusiQoL instrument. Methods: A cross-sectional descriptive study was carried out between April and December 2019 on 177 Omani patients with multiple sclerosis attending two major hospitals in Oman. Patients’ health-related quality of life was assessed using the validated disease-specific self-administered MusiQoL instrument. Results: Majority (51.4%) of the patients had poor HRQOL and 48.6% had moderate HRQOL. We found that being older than 30 years, a female, married, separated, widowed, or divorced, and having visual and sleep problems had poorer health-related quality of life. Among the different health-related quality of life components, relationship with the healthcare system and relationship with family and friends were the most affected because of the disease process. Our results also showed that psychological well-being and coping domains of MusiQoL questionnaires are significantly reduced in females as compared to males. Conclusion: Understanding the health-related quality of life of Omanis with multiple sclerosis provides valuable knowledge that could help optimize the management of this disease.

Outcomes

2013 ◽  
pp. 221-226
Author(s):  
David L. Scott
Keyword(s):  
Quality Of Life ◽  
Disease Activity ◽  
Short Form ◽  
Organ Damage ◽  
Confounding Factors ◽  
Short Term ◽  
Self Assessment ◽  
The Matrix ◽  
The Impact

Outcomes evaluate the impact of disease. In rheumatology they span measures of disease activity, end-organ damage, and quality of life. Some outcomes are categorical, such as the presence or absence of remission. Other outcomes involve extended numeric scales such as joint counts, radiographic scores, and quality of life measures. Outcomes can be measured in the short term—weeks and months—or over years and decades. Short-term outcomes, though readily related to treatment, may have less relevance for patients. Clinical trials focus on short-term outcomes whereas observational studies explore longer-term outcomes. The matrix of rheumatic disease outcomes is exemplified by rheumatoid arthritis. Its outcomes span disease activity assessments like joint counts, damage assessed by erosive scores, quality of life evaluated by disease-specific measures like the Health Assessment Questionnaire (HAQ) or generic measures like the Short Form 36 (SF-36), overall assessments like remission, and end result such as joint replacement or death. Outcome measures capture the impact of treating rheumatic diseases. They are influenced by disease severity and effective treatment. They also reflect many confounding factors. These include demographic factors like age, gender, and ethnicity and also deprivation, as poverty worsens outcomes. Comorbidities affect outcomes and patients with multiple comorbid conditions have worse quality of life with poorer outcomes. Patient self-assessment has grown in importance; it is simple and understandable. However, self-assessment can vary over time and does not always reflect assessors’ perspectives. Caution is needed comparing outcomes across units; the various confounding factors and measurement complexities make such comparative analyses challenging.

scholarly journals Outcomes of a Peer Support Program in Multiple Sclerosis in an Australian Community Cohort: A Prospective Study

2013 ◽  
Vol 2013 ◽  
pp. 1-7 ◽  
Author(s):  
Louisa Ng ◽  
Bhasker Amatya ◽  
Fary Khan
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Peer Support ◽  
Psychological Functioning ◽  
Support Program ◽  
Depression Anxiety Stress Scale ◽  
Brief Cope ◽  
The Impact ◽  
Peer Support Program

Background/Objectives. This pilot study evaluated the impact of a peer support program on improving multiple sclerosis (MS) related psychological functions (depression, anxiety, and stress) and enhancing quality of life. Methodology. Participants (n=33) were recruited prospectively and received an 8-week group face-to-face peer support program. Assessments were at baseline (T1), 6 weeks after program (T2), and 12 months after program (T3), using validated questionnaires: Depression Anxiety Stress Scale (DASS), McGill Quality of Life (MQOL), and Brief COPE. Results. Participants’ mean age was 52; the majority were female (64%) and married (64%). Median time since MS diagnosis was 16 years. At T2, participants reported improved psychological functioning (DASS “depression,” “anxiety,” and “stress” subscales, z values −2.36, −2.22, and −2.54, moderate effect sizes (r) 0.29, 0.28, and 0.32, resp.) and quality of life (MQOL SIS z score −2.07, r=0.26) and were less likely to use “self-blame” as a coping mechanism (Brief COPE z score −2.37, r=0.29). At T3, the positive improvements in stress (DASS stress subscale z score −2.41, r=0.31) and quality of life were maintained (MQOL SIS, z score −2.30, r=0.29). There were no adverse effects reported.

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