Multiple Sclerosis Quality Of Life Inventory Research Articles

A pilot, randomized, placebo-controlled study of mindfulness meditation in treating insomnia in multiple sclerosis

ObjectiveMindfulness is an established approach to reduce distress and stress reactivity by improving awareness and tolerability of thoughts and emotions. This study compares mindfulness training to sleep hygiene in persons with multiple sclerosis (PWMS) who report chronic insomnia, examining sleep efficiency (SE), self-reported sleep quality and quality of life.MethodsFifty-three PWMS were randomized (1:1) in a single-blinded, parallel group design to ten, two-hour weekly sessions of Mindfulness Based Stress Intervention for Insomnia (MBSI-I) over a span of ten weeks or a single, one hour sleep hygiene (SH) session over one day. The primary outcome measure was SE, measured by the Fitbit™ Charge 2 wrist device, at 10 and 16 weeks from the start of study interventions. Self-report outcomes included the Pittsburg Sleep Quality Rating Scale (PSQI), Insomnia Severity Index (ISI) and the Multiple Sclerosis Quality of Life Inventory (MSQLI). Nineteen participants in the MBSI-I group and 24 in the SH group completed the primary study. Subsequently, ten participants in the original SH group participated in the 10-week MSBI-I course and their data was added to the MBSI-I cohort (eMSBI-I).ResultsWhile neither SE nor the PSQI showed significant differences between MBSI-I, eMBSI-I and SH groups, ISI improved in both the MSBI-I and eMBSI-I vs SH at 10 weeks (p = 0.0014 and p = 0.0275) but not 16 weeks. However, pre and post assessments within the MBSI-I and eMBSI-I cohorts did show significant improvement in the PSQI and ISI at 10 and 16 weeks, while SH was significant in the ISI only at 16 weeks. Several quality of life measurements, including fatigue, mental health and cognitive function favored the mindfulness cohorts.ConclusionThis pilot study demonstrates beneficial effects of MBSR on insomnia, sleep quality and quality of life in PWMS.Trial registrationNCT03949296. 14 May 2019.

Outcomes After Functional Electrical Stimulation Cycle Training in Individuals with Multiple Sclerosis Who Are Nonambulatory.

Exercise is safe and beneficial for people with multiple sclerosis (MS). Functional electrical stimulation (FES) cycling offers people with significant weakness and mobility challenges an option for exercise. We sought to evaluate the safety of FES cycling and its potential to improve fatigue, pain, spasticity, and quality of life in people with moderate-to-severe MS. Sixteen participants with MS who were nonambulatory cycled for 30 minutes two to three times a week for 1 month. Outcomes assessed included MS Quality of Life Inventory (MSQLI) subscales, Modified Ashworth Scale (MAS), and manual muscle test (MMT). Fourteen participants (six women and eight men) with MS completed the training. All were able to maintain or increase their cycle time; half increased the resistance while cycling. Participants demonstrated a significant decrease in the Physical (P = .02) and Psychosocial (P < .01) subscales of the Modified Fatigue Impact Scale. There was no significant change in the other MSQLI subscale scores. There was no change in MAS and MMT scores. Type of MS and the use of antispasticity medications, disease-modifying therapies, or dalfampridine did not seem to influence response to training. There were no adverse events. Functional electrical stimulation cycling may be a viable and effective exercise option for people with moderate-to-severe MS. Further study is required to examine the parameters of FES cycling that are most effective for people with different MS symptoms and to fully explore the potential benefits of optimizing function and improving health in people with MS.

Feasibility and Impact of an 8-Week Integrative Yoga Program in People with Moderate Multiple Sclerosis-Related Disability: A Pilot Study.

This pilot study determined the feasibility of a specifically designed 8-week yoga program for people with moderate multiple sclerosis (MS)-related disability. We explored the program's effect on quality of life (QOL) and physical and mental performance. We used a single-group design with repeated measurements at baseline, postintervention, and 8-week follow-up. Feasibility was examined through cost, recruitment, retention, attendance, and safety. Outcomes included the Multiple Sclerosis Quality of Life Inventory (MSQLI), 12-item Multiple Sclerosis Walking Scale (MSWS-12), Timed 25-Foot Walk test (T25FW), 6-Minute Walk Test (6MWT), Nine-Hole Peg Test (NHPT), Five-Times Sit-to-Stand Test (FTSTS), Multidirectional Reach Test (MDRT), maximum expiratory pressure, and Paced Auditory Serial Addition Test-3″ (PASAT-3″). Fourteen participants completed the study. The program was feasible. There were significant main effects on the 36-item Short Form Health Status Survey Mental Component Summary (SF-36 MCS), Modified Fatigue Impact Scale (MFIS), Bladder Control Scale (BLCS), Perceived Deficits Questionnaire (PDQ), Mental Health Inventory (MHI), MSWS-12, T25FW, NHPT, PASAT-3″, 6MWT, FTSTS, and MDRT-Back. Improvements were found on the SF-36 MCS, MFIS, BLCS, PDQ, MHI, and MSWS-12 between baseline and postintervention. The effect on PDQ persisted at follow-up. Improvements were found on the T25FW, NHPT, 6MWT, FTSTS, and MDRT-Back between baseline and postintervention that persisted at follow-up. The PASAT-3″ did not change between baseline and postintervention but did between postintervention and follow-up. The yoga program was safe and feasible. Improvements in certain measures of QOL and performance were seen at postintervention and follow-up.

Analyses of measuring tools comparing the quality of life in patients with multiple sclerosis

Multiple sclerosis (MS) is an autoimmune disease affecting the central nervous system (CNS). It is characterized by degeneration of axons and axal demyelination. Prevalence of multiple sclerosis is 30 per 100 000 people in the world. In this article we aim to analyze and compare the selected measuring tools evaluating the quality of life in patients affected by MS. The studied measuring tools are: the Multiple Sclerosis Quality of Life Inventory (MSQLI), the Health-Related Quality of Life Questionnaire for Multiple Sclerosis (HRQOL-MS), the Multiple Sclerosis Quality of Life (MSQOL), the Functional Assessment of Multiple Sclerosis (FAMS), the Multiple Sclerosis Impact Scale (MSIS), the Multiple Sclerosis Functional Composite (MSFC), the Multiple Sclerosis International Quality of Life (MUSIQOL). Based on the selected studies we aim to compare the quality of life in MS patients. This article is directed towards the patients affected by MS and the specialist public. It aims to facilatate the navigation between the measuring tools evaluating the quality of life with multiple sclerosis.

Self-reported quality of life of patients with multiple sclerosis with mild disability

Background The quality of life (QoL) of the patient is a reflection of the severity of multiple sclerosis (MS) and predicts its prognosis; it is related to various factors that vary across cultures. Objective The aim of the current study was to evaluate the QoL of ambulatory and mildly disabled patients with relapsing remitting multiple sclerosis (RRMS), and explore the related factors and cultural characteristics. Patients and methods Sixty Egyptian patients with a definitive diagnosis of RRMS were recruited and assessed for disability using Expanded Disability Status Scale, their QoL using Multiple Sclerosis Quality of Life Inventory (MSQLI), and depression using the Beck Depression Inventory scale. Patients’ QoL was compared with that of 30 matched controls. Results The QoL of MS patients was significantly impaired in all domains compared with that of controls (P<0.001), except for Social Functioning. Most of the physical components of the QoL were strongly correlated with Expanded Disability Status Scale, fatigue, and perceived cognitive impairment, and mental components were correlated with depression (P<0.001), fatigue, and perceived cognitive impairment. An overall 81% of MS patients had depression that correlated with disability (P=0.012) and fatigue (P=0.001), and correlated moderately with perceived cognitive impairment. Women reported more anxiety (P=0.038) and less perceived social support (P=0.012), whereas men stated more sexual dissatisfaction (P=0.001). Conclusion Mildly disabled Egyptian patients with RRMS have a high prevalence of depression and considerable impairment of mental and physical components of the QoL, such as disease disability, depression, fatigue, and perceived cognitive impairment.

44.: Tablet-based Data capture in Multiple Sclerosis (TaDiMuS)

We aimed to design a practical tool to collect validated, quantitative clinical data in an outpatient setting using tablet-based technology. A custom designed browser-based cross-platform software tool (Tablet-based Data capture in Multiple Sclerosis; TaDiMuS) was formulated to capture previously validated multiple sclerosis (MS) patient-reported outcomes (PRO) including quality of life, mood, cognitive, sleep and disability data. The tool was designed to provide a highly flexible and practical mechanism for semi-automated “waiting room data collection” for clinical and clinical trial purposes. Tight integration with an existing electronic medical record, and development of a secure server environment for the retention of raw data, was planned. TaDiMuS has been integrated into the MS Clinic at the Brain and Mind Research Institute and includes the following validated tools: MS Quality of Life Inventory, Short Form-36, MS Quality of Life 54, MS Neuropsychology Questionnaire, Neurological Rating Scale, Symbol Digit Modalities Test, Pittsburgh Sleep Quality Index, and MS Impact Scale-29. A simple user interface provides the capacity to add more tests. More than 50 patients have successfully completed selected tests from the suite of tools available in TaDiMuS. An internal secure wireless network is used to transfer data on-the-fly to the existing electronic medical record (Genie Solutions, Indooroopilly, QLD, Australia), and the results of questionnaires are made immediately available to the clinician in the form of a PDF document prior to the consultation. The use of tablet based technology in the waiting room is a highly feasible and practical method of capturing patient-reported outcomes in MS. TaDiMuS instantly provides the clinician with a broad suite of information at the time of consultation, potentially enhancing workflow efficiency and optimising the early detection and treatment of under-recognised MS complications, such as cognitive dysfunction or sphincter disturbance. The prospective collection of standardised PRO in the clinical setting will facilitate the inclusion of this data in future phenotyping studies that patients may elect to participate in. Prospective MS clinical trials that incorporate TaDiMuS are planned. We aimed to design a practical tool to collect validated, quantitative clinical data in an outpatient setting using tablet-based technology. A custom designed browser-based cross-platform software tool (Tablet-based Data capture in Multiple Sclerosis; TaDiMuS) was formulated to capture previously validated multiple sclerosis (MS) patient-reported outcomes (PRO) including quality of life, mood, cognitive, sleep and disability data. The tool was designed to provide a highly flexible and practical mechanism for semi-automated “waiting room data collection” for clinical and clinical trial purposes. Tight integration with an existing electronic medical record, and development of a secure server environment for the retention of raw data, was planned. TaDiMuS has been integrated into the MS Clinic at the Brain and Mind Research Institute and includes the following validated tools: MS Quality of Life Inventory, Short Form-36, MS Quality of Life 54, MS Neuropsychology Questionnaire, Neurological Rating Scale, Symbol Digit Modalities Test, Pittsburgh Sleep Quality Index, and MS Impact Scale-29. A simple user interface provides the capacity to add more tests. More than 50 patients have successfully completed selected tests from the suite of tools available in TaDiMuS. An internal secure wireless network is used to transfer data on-the-fly to the existing electronic medical record (Genie Solutions, Indooroopilly, QLD, Australia), and the results of questionnaires are made immediately available to the clinician in the form of a PDF document prior to the consultation. The use of tablet based technology in the waiting room is a highly feasible and practical method of capturing patient-reported outcomes in MS. TaDiMuS instantly provides the clinician with a broad suite of information at the time of consultation, potentially enhancing workflow efficiency and optimising the early detection and treatment of under-recognised MS complications, such as cognitive dysfunction or sphincter disturbance. The prospective collection of standardised PRO in the clinical setting will facilitate the inclusion of this data in future phenotyping studies that patients may elect to participate in. Prospective MS clinical trials that incorporate TaDiMuS are planned.

Physical Health Status in Multiple Sclerosis Patients in Tehran City

Physical Health Status in Multiple Sclerosis Patients in Tehran City

The effect of illness perception on physical health-related quality of life promotion in multiple sclerosis (MS) patients attending peer support groups

Illness perception influences patients’ decision to adopt effective behavior and achieve positive results such as adapting with the disease and improving functionality, and the interventions that increase illness perception can promote health. This study aimed to investigate the effect of illness perception on the physical health-related quality of life of MS patients attending peer support groups. This study with a quasi-experimental before-and-after design included 33 MS patients in three groups: male-only(n=10), female-only(n=11) and one with both males and females (mixed, n=12) that selected by convenience sampling Participants were required to attend 8 weekly sessions comprising 2 hours each. Instruments used to assess physical health related quality of life and illness perception were the physical health section of Multiple Sclerosis Quality of Life Inventory (MSQLI) and Revised Illness Perception Questionnaire(IPQ-R) respectively, which were completed by participants before and after attending the group sessions. The results showed that although illness perception of MS patients attending peer support groups did not show a significant increase, physical health significantly improved(p=0.001). Attending peer support group increased illness perception in the mixed group(p=0.01) and elevated physical health in men only and mixed group (p=0.03 for the mixed group and p=0.04 for men only group). Regression analysis showed a significant relationship between MS and physical health with efficacy of 0.54(p<0.001). The results showed that increased illness perception in MS patients improves their physical health. Therefore, we can improve MS patients’ physical health-related quality of life through peer support groups and hence promote patients’ quality of life.

Comparison of Quality of Life in Clinically Isolated Syndrome Patients Who Convert and Do Not Convert to Clinically Definite Multiple Sclerosis

A secondary analysis was undertaken to compare patient-reported outcomes (PROs) of individuals who did and did not convert to clinically definite multiple sclerosis (CDMS) approximately 5 years after their first clinically isolated syndrome (CIS). Patients included in the analysis were participating in a long-term extension (called CHAMPIONS) of the Controlled High-Risk Avonex® Multiple Sclerosis Prevention Study (CHAMPS). The Multiple Sclerosis Quality of Life Inventory (MSQLI), a battery including the Short Form Health Status Survey (SF-36) and nine disease-specific scales, was administered to participants 5 years after their initial symptoms suggestive of MS (randomization into the CHAMPS study). Of 203 CHAMPIONS patients, 188 (93%) completed the MSQLI at enrollment into this extension study. Of these, 79 (42%) converted to CDMS. Statistically significant differences (P &amp;lt; .001) between those who did and did not convert to CDMS were found for 4 of the 11 MSQLI scales: the SF-36 Physical Component Summary, the Modified Fatigue Impact Scale, the Pain Effects Scale, and the Bladder Control Scale. Trends not meeting our criteria for statistical significance (P &amp;gt; .001 but &amp;lt; .01) were observed for the SF-36 Mental Component Summary, the Perceived Deficits Questionnaire, and the Mental Health Inventory. SF-36 scores for patients not converting to CDMS over 5 years were similar to those reported for age-matched normal controls. No other demographic or disease-related factors were associated with these PROs. When stratified by Expanded Disability Status Scale score, patients who converted to CDMS demonstrated statistically significant differences on the same four scales defined above that differentiated those who did and did not convert to CDMS. These data show that individuals who have CDMS but limited disability demonstrate clear evidence of diminished health-related quality of life.

Factors Associated with Health-Related Quality of Life in Multiple Sclerosis

Much research has gone into the assessment of function and health-related quality of life (HRQOL) in those with multiple sclerosis (MS). The Medical Outcomes Study 36-item short form (SF-36) has been widely used in this population but current recommendations are that it be supplemented with condition-specific measures such as the MS Quality of Life Inventory (MSQLI) and the MS Functional Composite (MSFC). The goal of the baseline component of this study was the measurement of generic and condition-specific HRQOL, and the identification of factors associated with these outcomes. HRQOL was assessed at the baseline phase of a longitudinal study. Participants completed the assessment during their regularly scheduled clinic visit. 300 of 387 eligible patients agreed to participate, for a response rate of 77.5%. Age ranged from 22 to 77 years, while duration of MS ranged from 1 to 47 years. Mean SF-36 scores were well below age- and sex-adjusted normative data. Only 240 completed the MSFC component. Higher EDSS, use of support services, pain medications, clinical depression and antidepressant use were associated with poorer HRQOL, while higher income and education were associated with better HRQOL. There is a substantial burden of illness associated with MS when compared to normative HRQOL data. This was more pronounced in physically- than in mentally-oriented domains. Assessment of HRQOL provides a valuable complement to the EDSS by providing information about the patient perception of function and HRQOL beyond that which can be obtained by physical assessment alone.

The 58th Annual Meeting of the American Academy of Neurology San Diego, California April 1-8, 2006

The 58th Annual Meeting of the American Academy of Neurology San Diego, California April 1-8, 2006

Change in clinician-assessed measures of multiple sclerosis and subject-reported quality of life: results from the IMPACT study

Background The IMPACT study demonstrated the benefit of interferon beta-1a (IFNβ-1a, Avonex®) two-year change in disability measured by the Multiple Sclerosis Functional Composite (MSFC) in secondary progressive multiple sclerosis (SP-MS) and health-related quality of life (HRQoL) measured by the Multiple Sclerosis Quality of Life Inventory (MSQLI). The IMPACT data permit a detailed assessment of the relation between clinical and self-reported measures. Methods IMPACT was an international randomized, double-blind, placebo-controlled trial of SP-MS patients. As the MSQLI is only in English, this report includes US and Canadian subjects. Subjects were randomized to weekly intramuscular (im) injections of INb-1a (60 mg) or placebo for 24 months. Results At baseline and follow-up, MSQLI correlations were generally stronger with the EDSS than with the MSQLI, MSFC but comparable with MSFC components. Combining the two groups, MSQLI changes for those in the best and worst MSFC change quartiles demonstrated a statistical difference for six of the 11 MSQLI scales. Linear regression demonstrated that EDSS change from baseline to month-24 scores was correlated with change in two MSQLI components. Conclusion These data support the appropriateness of using the MSQLI with individuals who have SP-MS.

Contribution of Demographic, Medical, and Social Support Variables in Predicting the Mental Health Dimension of Quality of Life among People with Multiple Sclerosis

The purpose of this study was to examine the contribution of demographic, medical, and social support variables in predicting the mental health dimension of quality of life (MHD/QOL) among people with multiple sclerosis (MS). Eighty-two participants of employment age recruited from hospital neurology clinics specializing in MS completed a demographic questionnaire, and 69 completed the Multiple Sclerosis Quality of Life Inventory (MSQLI). In addition, a neurologist used the Expanded Disability Status Scale (EDSS) to assess the medical status of each participant.The number of young children in the family, MS duration, cognitive impairment, and social support were predictors of MHD/QOL. Employment was not associated with MHD/QOL score. Social support made a significant and unique contribution to the MHD/QOL beyond all the other variables. Implications for social work practice are presented.

Reliability and validity of the Multiple Sclerosis Quality of Life Inventory in older individuals

Purpose: Despite the increasing number of older individuals with multiple sclerosis (MS), there is a paucity of research on this subpopulation. Health-related quality of life (HRQOL) has received extensive attention in MS; however samples tend to be young. The present study assesses the internal consistency reliability and construct validity of the MS Quality of Life Inventory (MSQLI), a widely employed measure of HRQOL, in older individuals. Method: Select subscales of the MSQLI and other measures of mental health and physical functioning were administered by telephone to 30 randomly selected older ( ⩾̸ 60) individuals and a gender-matched sample of younger ( < 60) individuals. Reliability estimates were calculated separately for each group. Construct (convergent) validity was assessed by examining the pattern of correlations between MSQLI subscales and measures of related constructs in the two groups. Results: Reliability estimates were similar in the two groups. With few exceptions, the correlations measuring convergent validity were in the expected direction, and of considerable magnitude, in both groups Conclusions: Results provide preliminary evidence that the MSQLI is a reliable and valid instrument for use with older individuals. The slightly different pattern of results observed in the validity analysis might be explained by an adjustment hypothesis. Future research on HRQOL in this subpopulation is encouraged.

Clinical outcome measures for research in multiple sclerosis.

The development of new and more sensitive clinical outcome measures for research in multiple sclerosis (MS) has been fueled by the development of effective therapies. As such, active arm comparison studies that require more sensitive clinical outcome measures are now commonplace. The Kurtzke Expanded Disability Status Scale (EDSS), the most widely used measure of neurologic impairment in MS, is particularly designed for classifying patients with respect to disease severity but has been criticized for its noninterval scaling, emphasis on ambulation status, relatively reduced sensitivity in the mid and upper ranges of scores, and absence of adequate cognitive and visual components. In response to perceived difficulties with the EDSS, the National Multiple Sclerosis Society Clinical Outcomes Assessment Task Force has developed the Multiple Sclerosis Functional Composite (MSFC). The MSFC includes three components that yield objective and quantitative results: 1) the timed 25-ft walk, 2) the nine-hole peg test, and 3) the 3-second paced auditory serial addition test. This scale has the advantages of continuous scoring with a composite Z score, standardized protocols, and high degrees of reliability and validity. Candidate visual function outcome measures for the MSFC, including the low-contrast Sloan letter chart, are currently under investigation. In addition to measures of neurologic impairment, health-related quality of life (HRQOL) measures have gained increasing importance as clinical trial outcome measures. The MS Quality of Life Inventory, a disease-specific HRQOL measure, has been developed to capture self-reported neurologic dysfunction and the impact of MS upon activities of daily living. MS clinical trials of the future, particularly active-arm comparison studies, will require more sensitive clinical outcome measures such as the MSFC. Measures of visual function and HRQOL should also be incorporated to capture the broad scope of neurologic impairment and disability in MS populations.

Recent developments in the assessment of quality of life in multiple sclerosis (MS).

Multiple sclerosis (MS) and its treatment have broad-ranging effects on quality of life. This article reviews recent efforts to assess the impact of MS on activities of daily living (ADLs) and health-related quality of life (HRQL), and describes the development of the Multiple Sclerosis Quality of Life Inventory (MSQLI). The MSQLI is a modular MS-specific HRQL instrument consisting of a widely-used generic measure, the Health Status Questionnaire (SF-36), supplemented by nine symptom-specific measures (covering fatigue, pain, bladder function, bowel function, emotional status, perceived cognitive function, visual function, sexual satisfaction, and social relationships). Content validation consisted of evaluating its adherence to a conceptual model of the impact of MS, and review by MS specialists (neurologists and allied health professionals), HRQL experts, patients, and caregivers. The reliability and construct validity of the MSQLI were rigorously evaluated in a field test with 300 North American patients (198 female, 102 male) with definite MS (Poser criteria) and a broad range of physical impairment (EDSS=0. 0-8.5). This article concludes by comparing the MSQLI with two other MS-specific HRQL measures (MS Quality of Life-54 (QOL-54) and Functional Assessment of Multiple Sclerosis (FAMS)) and discussing key issues to consider in selecting an HRQL instrument for a collaborative database.

Recent developments in the assessment of quality of life in Multiple Sclerosis (MS)

Multiple sclerosis (MS) and its treatment have broad-ranging effects on quality of life. This article reviews recent efforts to assess the impact of MS on activities of daily living (ADLs) and health-related quality of life (HRQL), and describes the development of the Multiple Sclerosis Quality of Life Inventory (MSQLI). The MSQLI is a modular MS-specific HRQL instrument consisting of a widely-used generic measure, the Health Status Questionnaire (SF-36), supplemented by nine symptom-specific measures (covering fatigue, pain, bladder function, bowel function, emotional status, perceived cognitive function, visual function, sexual satisfaction, and social relationships). Content validation consisted of evaluating its adherence to o conceptual model of the impact of MS, and review by MS specialists (neurologists and allied health professionals), HRQL experts, patients, and care givers. The reliability and construct validity of the MSQLI were rigorously evaluated in a field test with 300 North American patients (198 female, 102 male) with definite MS (Poser criteria) and a broad range of physical impairment (EDSS=0.0-8.5). This article concludes by comparing the MSQLI with two other MS-specific HRQL measures (MS Quality of Life-54 (QOL-54) and Functional Assessment of Multiple Sderosis (FAMS)) and discussing key issues to consider in selecting an HRQL instrument for a collaborative database.