Hidden Disabilities in Multiple Sclerosis – The impact of Multiple Sclerosis on Patients and their Caregivers

2013 ◽  
Vol 8 ((Suppl.1)) ◽  
pp. 2 ◽  
Author(s):  
Gavin Giovannoni ◽  
John F Fole ◽  
David W Brandes ◽  
◽  
◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Memory Impairment ◽  
Sexual Dysfunctions ◽  
Walking Ability ◽  
Pharmacological Treatments ◽  
Heterogeneous Condition ◽  
Hidden Disabilities ◽  
The Impact

Multiple sclerosis (MS) is a heterogeneous condition that presents with a large variety of symptoms. While motor functions including coordination, gait and walking ability are clearly visible to clinicians, including MS specialists. These are sometimes termed hidden disabilities and are often overlooked because patients do not mention them in consultations, either because they are embarrassed, do not want to disappoint their family and therefore do not mention the symptoms, or they have not linked the symptoms to their disease. Hidden disabilities in MS include cognition and memory impairment, depression, anxiety and pseudobulbar affect, pain, fatigue, sleep disorders, bowel, bladder and sexual dysfunctions, osteopenia and osteoporosis. These disabilities are associated with a reduced quality of life in patients, their families and caregivers, and affect the ability of patients to function in everyday life. Pharmacological treatments and other interventions are available to manage these symptoms; however, the effectiveness of these interventions in MS is variable. There is need for greater recognition and further research into therapeutic options to reduce the burden of hidden disabilities in MS.

scholarly journals Effect of a 2-Week Trial of Functional Electrical Stimulation on Gait Function and Quality of Life in People with Multiple Sclerosis

2014 ◽  
Vol 16 (3) ◽  
pp. 146-152 ◽  
Author(s):  
Abbey Downing ◽  
David Van Ryn ◽  
Anne Fecko ◽  
Christopher Aiken ◽  
Sean McGowan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Electrical Stimulation ◽  
Functional Electrical Stimulation ◽  
Gait Speed ◽  
Walking Ability ◽  
Full Time ◽  
Short Period ◽  
The Impact

Background: Footdrop is a common gait deviation in people with multiple sclerosis (MS) leading to impaired gait and balance as well as decreased functional mobility. Functional electrical stimulation (FES) provides an alternative to the current standard of care for footdrop, an ankle-foot orthosis (AFO). FES stimulates the peroneal nerve and activates the dorsiflexor muscles, producing an active toe clearance and a more normal gait. This study was undertaken to determine the effects of a 2-week FES Home Assessment Program on gait speed, perceived walking ability, and quality of life (QOL) among people with MS-related footdrop. Methods: Participants completed the Timed 25-Foot Walk test (T25FW) and two self-report measures: 12-item Multiple Sclerosis Walking Scale (MSWS-12) and 29-item Multiple Sclerosis Impact Scale (MSIS-29). Measures were taken without FES before and with FES after 2 weeks of full-time FES wear. Results: A total of 19 participants (10 female, 9 male) completed the study; mean age and duration of disease were 51.77 ± 10.16 and 9.01 ± 7.90 years, respectively. Use of FES for 2 weeks resulted in a significant decrease in time to complete the T25FW (P < .0001), the MSWS-12 standardized score (P < .0001), and the MSIS-29 total (P < .0001), Physical subscale (P < .0001), and Psychological subscale (P = .0006) scores. Conclusions: These results suggest that use of FES can significantly improve gait speed, decrease the impact of MS on walking ability, and improve QOL in people with MS-related footdrop even over a short period of time.

Sexual Dysfunctions and Sexual Quality of Life in Men with Multiple Sclerosis

2014 ◽  
Vol 11 (5) ◽  
pp. 1294-1301 ◽  
Author(s):  
Michal Lew‐Starowicz ◽  
Rafal Rola
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Sexual Dysfunctions ◽  
Sexual Quality Of Life

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.

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.

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.

Quality of life in multiple sclerosis: the impact of depression, fatigue and disability

2001 ◽  
Vol 7 (5) ◽  
pp. 340-344 ◽  
Author(s):  
M.P. Amato ◽  
G. Ponziani ◽  
F. Rossi ◽  
C.L. Liedl ◽  
C. Stefanile ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
The Impact
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