scholarly journals Measuring the Quality of Life in Patients with Multiple Sclerosis in Clinical Practice: A Necessary Challenge

2013 ◽  
Vol 2013 ◽  
pp. 1-8 ◽  
Author(s):  
Karine Baumstarck ◽  
Laurent Boyer ◽  
Mohamed Boucekine ◽  
Pierre Michel ◽  
Jean Pelletier ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Clinical Practice ◽  
Disease Progression ◽  
Clinical Relevance ◽  
Physical Disability ◽  
Management Of Care

While the physical disability aspect of multiple sclerosis (MS) is of great importance, quality of life (QoL) measurements are being considered increasingly important with regard to evaluating disease progression, treatment, and the management of care provided to MS patients. Despite the acknowledged need to consider QoL issues, QoL assessment remains underutilized in clinical practice. These issues should be explored and understood to promote the use of measuring QoL in MS clinical practice. We explore the difficulties for clinicians: choosing and determining the most appropriate QoL measure and how to best integrate QoL measurements into clinical practice. This paper discusses several avenues to provide to clinicians arguments of the clinical relevance and accuracy of QoL instruments and ultimately to enhance the use of QoL measures in clinical practice for MS patients.

Health-related quality of life in secondary progressive multiple sclerosis

2007 ◽  
Vol 13 (3) ◽  
pp. 386-392 ◽  
Author(s):  
A.G. Beiske ◽  
H. Naess ◽  
J.H. Aarseth ◽  
O. Andersen ◽  
I. Elovaara ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Disease Progression ◽  
Physical Disability ◽  
Health Related Quality ◽  
Secondary Progressive ◽  
Related Quality ◽  
Health Related ◽  
Sum Scores

Common disability scales in multiple sclerosis (MS) are often weighted towards physical disability. Non-motor symptoms such as depression, fatigue and pain substantially influence wellbeing in MS. Health-related quality of life (HRQoL) measures the broader impact of MS and might indicate less obvious disease burdens. We analysed HRQoL, using the Nottingham Health Profile Part I (NHP-I), among 345 secondary progressive MS (SPMS) patients participating in a randomized trial of interferon-β1a (IFN-β1a), 22 μg subcutaneously weekly, or matching placebo. The results did not reveal any beneficial effect of IFN-β1a in any outcome measure. NHP-I sub- and sum scores were compared for 217 population controls and correlated with demographic and clinical disease variables. SPMS patients had lower NHP-I sum and all subscores than the controls. Patients experiencing disease progression reported worse NHP-I sum scores. Increased fatigue, Expanded Disability Status Scale (EDSS) and Arm Index scores were independently associated with reduction in several NHP-I subscores. SPMS patients had significantly lower HRQoL than controls and physical disability (EDSS and Arm Index), disease progression and fatigue strongly influenced this. MS

The Impact of Health Anxiety in Multiple Sclerosis: A Replication and Treatment Case Series

2017 ◽  
Vol 46 (2) ◽  
pp. 148-167 ◽  
Author(s):  
Neil Carrigan ◽  
Leon Dysch ◽  
Paul M. Salkovskis
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Physical Disability ◽  
Cognitive Behaviour Therapy ◽  
Health Anxiety ◽  
Case Series ◽  
Behaviour Therapy ◽  
Cognitive Behaviour ◽  
The Impact

Background: Multiple sclerosis (MS) is commonly associated with psychological complications. Previous research by Hayter and colleagues (2016) found that in patients with MS, health anxiety (HA) can account for part of the variance in quality of life (QoL) independent of physical and cognitive impairment caused by the disease. MS patients with HA perceived their intact physical and cognitive performance as impaired relative to those without HA and attributed the impairment to MS. These misperceptions might be useful targets in the treatment of HA in MS using cognitive behaviour therapy (CBT). Aims: Study 1 sought to replicate the main findings from Hayter et al. (2016). Study 2 examined the impact of HA-focused CBT in a case series. Method: In Study 1, twenty participants with MS were screened for HA and assigned to either a high or low HA group. They completed assessments of cognitive and physical functioning before rating their performance on these tasks, followed by measures of QoL, mood and physical disability. Four participants in the high HA group subsequently received six sessions of CBT using a consecutive AB case series in Study 2. Results: Study 1 replicated the main findings from the earlier study. In Study 2, three of the four patients who received treatment showed substantial improvements in HA and mood and all showed improvement in QoL. Conclusion: Given the high rates of HA in MS patients and its impact on QoL, this case series suggests that a brief CBT intervention could significantly improve patients’ wellbeing.

A Novel Electronic Application of Patient-reported Outcomes in Multiple Sclerosis – Meeting the Necessary Challenge of Assessing Quality of Life and Outcomes in Daily Clinical Practice

2014 ◽  
Vol 9 (1) ◽  
pp. 49 ◽  
Author(s):  
Simon Exell ◽  
Mark Thristan ◽  
Fernando Dangond ◽  
Kurt Marhardt ◽  
Meaghan St Charles Krohe ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Clinical Practice ◽  
Negative Impact ◽  
Patient Reported Outcome ◽  
Software Application ◽  
Wireless Data Transmission ◽  
Patient Reported ◽  
Auto Injector

Multiple sclerosis (MS) has a substantial negative impact on health-related quality of life. Clinical assessments often do not include standardised, routine assessment of MS impact from the patient perspective, and communication between healthcare practitioners (HCPs) and patients can be lacking. Thus, there is a need for patient-reported outcome (PRO) measures to encourage patient–HCP communication, to help inform HCPs of matters important to patients and to aid both patients and HCPs in managing the disease. MSdialog is a web- and mobile-based software application that works with auto-injector devices and electronic autoinjectors, including the RebiSmart® 2.0 device (a handheld electronic Rebif® auto-injector with wireless data transmission capabilities, CE marked and available worldwide [excluding the US]) to collect and store real-time, point-of-administration adherence, clinician-reported outcomes and PRO data. MSdialog may provide a practical solution to support patient-proactive engagements and self-management, patient-centred care and participatory decision-making in clinical practice.

Reduced quality of life among multiple sclerosis patients with sexual disturbance and bladder dysfunction

2001 ◽  
Vol 7 (4) ◽  
pp. 231-235 ◽  
Author(s):  
M W Nortvedt ◽  
T Riise ◽  
K-M Myhr ◽  
A-M Landtblom ◽  
A Bakke ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Physical Disability ◽  
Bladder Dysfunction ◽  
Survey Methods ◽  
Normal Population ◽  
Cross Sectional ◽  
Sf 36 ◽  
Multiple Sclerosis Patients

Objective: Physical disability explains only part of the reduced quality of life found among multiple sclerosis (MS) patients. Bladder dysfunction and sexual disturbance are frequent and distressing problems for MS patients. We therefore estimated the relationship between the presence and degree of sexual disturbance/bladder dysfunction and the patients' quality of life as measured by the SF-36 Health Survey. Methods: We performed a cross-sectional study of all individuals with the onset of MS between 1976 and 1986 in Hordaland County, Norway. The disease duration at examination was 9-19 years; 194 patients (94%) participated. Results: Fifty-three per cent of the patients with low physical disability (Expanded Disability Status Scale (EDSS)≤44.0) reported disease-related sexual disturbance and 44% had bladder dysfunction according to the Incapacity Status Scale. The corresponding figures for the patients with a high physical disability (EDSS>44.0) were 86 and 81% respectively. The patients with sexual disturbance had markedly and significantly reduced scores on all eight SF-36 scales, this was after adjustment for disease development measured by the EDSS. The patients without sexual disturbance scored 0.5 s.d. lower than a normal population on the social functioning scale, whereas those with marked sexual disturbance scored 1.5 s.d. lower. Similar results were found for the patients with bladder dysfunction. Conclusion: Bladder and sexual problems are associated with a marked reduction in the quality of life, also among patients with otherwise low disability. This underlines the need for identifying and treating these problems.

Predicting quality of life in multiple sclerosis: accounting for physical disability, fatigue, cognition, mood disorder, personality, and behavior change

2005 ◽  
Vol 231 (1-2) ◽  
pp. 29-34 ◽  
Author(s):  
Ralph H.B. Benedict ◽  
Elizabeth Wahlig ◽  
Rohit Bakshi ◽  
Inna Fishman ◽  
Frederick Munschauer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Behavior Change ◽  
Mood Disorder ◽  
Physical Disability ◽  
And Behavior

scholarly journals Cognition and Physical Disability in Predicting Health-Related Quality of Life in Multiple Sclerosis

2011 ◽  
Vol 13 (2) ◽  
pp. 57-63 ◽  
Author(s):  
Marietta Hoogs ◽  
Sukhmit Kaur ◽  
Audrey Smerbeck ◽  
Bianca Weinstock-Guttman ◽  
Ralph H. B. Benedict
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Physical Disability ◽  
Self Report ◽  
Task Completion ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Physical Hrqol

Many studies have shown that multiple sclerosis (MS) has a significant impact on patient health-related quality of life (HRQOL), but the relative contributions of physical versus cognitive disability are not well established. Most studies have relied on HRQOL outcomes that depend largely on patient mood, life satisfaction, and personal happiness. The Sickness Impact Profile (SIP) is a measure of HRQOL known for its relatively strong emphasis on task completion and activities of daily living. As such, the SIP may be less influenced by depression. We sought to determine the relative influence of physical disability and cognition, above and beyond demographic and disease variables, in predicting HRQOL. Patients (n = 132) and healthy controls (n = 26) underwent complete neuropsychological evaluation using the Minimal Assessment of Cognitive Function in MS (MACFIMS) battery and a series of self-report measures assessing depression, fatigue, and HRQOL. The SIP was also administered. Correlation analysis and group comparisons revealed significant associations between cognition and HRQOL outcomes. Logistic regression models comparing the Expanded Disability Status Scale (EDSS) and cognitive tests in predicting poor physical HRQOL retained both EDSS and Symbol Digit Modalities Test (SDMT) performance, while models predicting poor psychosocial and poor overall HRQOL retained only the SDMT. These findings support cognition as a significant predictor of overall HRQOL, psychosocial HRQOL, and, interestingly, physical HRQOL.

scholarly journals A Group Cognitive Behavioural Therapy Improves Quality of Life of Multiple Sclerosis Patients and Delays Disease Progression: A Multi-Centre Controlled Trial

2018 ◽  
Vol 1 (1) ◽  
pp. 77-84
Author(s):  
Richard Devy ◽  
Philip Lehert ◽  
Marc Genty
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Disease Progression ◽  
Cognitive Behavioural Therapy ◽  
Controlled Trial ◽  
Behavioural Therapy ◽  
Group Cognitive Behavioural Therapy ◽  
Cognitive Behavioural ◽  
Multiple Sclerosis Patients

Background: Multiple Sclerosis (MS) affects quality of life (QoL). Pharmacological treatments demonstrated benefits on clinical endpoints without improving QoL. We evaluated the effects of a group Cognitive Behavioural Therapy (CBT) on QoL disease progression. Methods: One-year multi-centre controlled multivariate-matched study was organised on Relapsing-Remitting MS (RRMS) patients with Expanded Disability Status Scale (EDSS) < 4, MS duration < 2 years, treated by interferon I? in 11 French centres. For each new patient, the two best-matching patients for age, gender, EDSS, mood, illness duration baseline variables were selected in the other centres. The self-filled Two Lives Scale (TLS)-QoL10 was used at months (M) 0-3-6-9-12-15; the post-baseline mean QoL was the endpoint. We compared CBT + I? to I? alone. The effect of disease progression on QoL was evaluated by modelling, for each visit, the effect of EDSS on QoL at later visits.Results: 19 + 32 patients were recruited. Compared to placebo, improvements of 1.10 (95%CI [0.31-1.89], p = 0.009) and 1.43*** [0.72, 2.15] were observed in the CBT group on QoL and coping scales, respectively. Coping explained 81%*** [57, 100] of the effect of CBT on QoL. QoL was negatively affected by disease progression (0.95*** [-1.21; 0.63]), whereas EDSS was influenced by QoL values (-0.10*** [-0.14; -0.06]).Conclusions: We observed a clinically significant beneficial effect of CBT on QoL, the effect of CBT essentially explained by an increase of coping, a positive influence of QoL on disease progression. QoL is both the most important target for patients and a factor of slowing disease progression.

Physical Activity in Prevention of Risk and Disability in Some Neurological Diseases

2014 ◽  
Vol 22 (1) ◽  
pp. 21-27
Author(s):  
Józef Opara
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Multiple Sclerosis ◽  
Physical Disability ◽  
Neurological Diseases ◽  
Review Of The Literature ◽  
Disability Progression ◽  
Multiple Sclerosis Patients

Abstract The question of the role of physical activity in preventing disability in neurological diseases is the issue which is not in doubt. There is well known that physical activity in Parkinson`s disease and in Multiple Sclerosis patients is less than is the case in the general population. Numerous scientific studies have confirmed the low physical activity of people with PD and MS. Improving physical activity delays the progress of physical disability and has the effect on increasing the quality of life in those two diseases. In this paper an descriptive review of the literature devoted to the effect of physical activity on risk of PD and its impact on disability progression in PD and MS has been presented. The different recommendations for physical activity and different methods of assessment have been described.

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