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

1999 ◽  
Vol 5 (4) ◽  
pp. 251-259 ◽  
Author(s):  
J S Fischer ◽  
N G LaRocca ◽  
D M Miller ◽  
P G Ritvo ◽  
H Andrews ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Bowel Function ◽  
Bladder Function ◽  
Allied Health Professionals ◽  
Hrql Instrument ◽  
Related Quality ◽  
Perceived Cognitive Function ◽  
The Impact

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.

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 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 The impact of lower urinary tract symptoms on health‐related quality of life among patients with multiple sclerosis

2014 ◽  
Vol 35 (1) ◽  
pp. 48-54 ◽  
Author(s):  
Kristin M. Khalaf ◽  
Karin S. Coyne ◽  
Denise R. Globe ◽  
Daniel C. Malone ◽  
Edward P. Armstrong ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Lower Urinary Tract ◽  
Health Related Quality ◽  
Urinary Tract Symptoms ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Lower Urinary

Do higher levels of uncertainty in illness reduce the perceived health related quality of life of Multiple Sclerosis (MS) patients?

2015 ◽  
Vol 3 (4) ◽  
pp. 543
Author(s):  
Lara Gitto ◽  
Maria Daniela Giammanco
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Marginal Effect ◽  
Health Related Quality ◽  
Uncertainty In Illness ◽  
Starting Point ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Background: Multiple Sclerosis (MS) represents one of the most common causes of neurological disability and the unpredictability and severity of its manifestations determine uncertainty in illness. While MS patients’ Health Related Quality of Life (HRQoL) has been frequently assessed, the impact of uncertainty on HRQoL has not been adequately considered to date. The objective of the study was to reduce this gap in the literature.Design: One hundred and twenty patients with relapsing-remittingMS were interviewed in order to gather information about their assessment of HRQoL, measured with the Visual Analogue Scale (VAS) and their perceptions of uncertainty in illness assessed through the Mishel Uncertainty in Illness Scale (MUIS). The relationship between HRQoL and two dimensions of uncertainty, namely “ambiguity” and “inconsistency”, have been tested with diverse Tobit and Probit specifications.Results: Inconsistency exhibited a negative and significant correlation in all the specifications of the model. Marginal effects suggested how a unit change in the total score of the inconsistency scale determined an increase of 6.2% in the probability to report a VAS score higher than 60 (median score in the sample). Ambiguity and inconsistency, jointly considered, had a marginal effect of 2.1%.Conclusions: This study contributes to the assessment of the patient’s general status over the standard parameters for quality of life. It  may represent the starting point for further analyses on the impact of separate facets of the Uncertainty in Illness on HRQoL, experienced not only by MS patients, but also by other patients suffering from chronic conditions.

Gender differences in health-related quality of life in multiple sclerosis

2009 ◽  
Vol 15 (11) ◽  
pp. 1339-1346 ◽  
Author(s):  
Ilaria Casetta ◽  
Trond Riise ◽  
Monica Wamme Nortvedt ◽  
Nicola Tiberio Economou ◽  
Riccardo De Gennaro ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Multiple Sclerosis ◽  
Physical Functioning ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Gender Specific

Women have about twice the risk of developing multiple sclerosis (MS) compared with men, a ratio that seems to be increasing. Most studies show that female patients seem to have a more favourable outcome of the disease. We studied the gender-specific impact of MS on health-related quality of life. We surveyed the population prevalence of MS patients in Ferrara, Italy. Data were extracted from the MS registry of the study area. Health-related quality of life was assessed using the MSQOL54 questionnaire. We analysed 370 patients (105 men and 265 women). They had worse scores than the general population in all health-related quality of life dimensions, ranging from 2.5 standard deviations (SD) lower for physical functioning to less than 0.5 standard deviations for mental health. Health-related quality of life scores were inversely correlated with disability scores. The impact of disability on health-related quality of life was higher for men than women regarding physical functioning (p < 0.01), vitality (p < 0.001), social functioning (p < 0.001), emotional wellbeing (p < 0.05) and mental health (p < 0.01). For scales reflecting mental health, a marked reduction with increasing disability was seen for men, while a linear reduction in the range of Expanded Disability Status Scale score 0—5 was reported for women, followed by no clear decrease for higher scores. We conclude that MS affects health-related quality of life in all of its dimensions. The impact of disability seems to be stronger among men, in particular for scales related to mental well-being. This could indicate that interventions should to be gender specific in order to better meet patients’ needs.

scholarly journals Optimisation of Scores Generated by an Online Feline Health–Related Quality of Life (HRQL) Instrument to Assist the Veterinary User Interpret Its Results

2021 ◽  
Vol 7 ◽  
Author(s):  
Vinny Davies ◽  
Jacqueline Reid ◽  
E. Marian Scott
Keyword(s):  
Quality Of Life ◽  
Clinical Decision Making ◽  
Well Being ◽  
Health Related Quality ◽  
Meaningful Improvement ◽  
Hrql Instrument ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Using methodology previously described for the dog health-related quality of life (HRQL) tool (VetMetrica™), the aim was to optimize the scores profile of a comparable feline online HRQL instrument for monitoring HRQL in cats, to assist in its interpretation. Measuring HRQL helps quantify the impact of disease and its treatment on well-being, aids clinical decision making and provides information in clinical trials. In Study 1, using data collected from previous studies, scores generated for three domains of HRQL (Vitality, Comfort, Emotional Well-being) in healthy cats were normalized using standard statistical techniques of logit transformation and T-scores, such that the average healthy cat has a score of 50 in all three HRQL domains. Using normalized scores from healthy and sick cats, a threshold score of 44.8 was determined, above which 70% of healthy cats should score. Study 2 determined the Minimal Important Difference (MID) in normalized score that constituted a clinically significant improvement in each domain. Three methods were tested in order to determine the MID, with the final choice made based on statistical and clinical considerations. Thresholds of 5, 7.5, and 5 were chosen for the three HRQL domains representing Vitality, Comfort and Emotional Well-being, respectively. This study makes available a means of displaying HRQL scores from an online application in an easily interpretable manner and quantifies a clinically meaningful improvement in score. To illustrate the practical application of these developments, three case examples are presented. Example 1 illustrates the raw and normalized scores for a group of overweight cats enrolled in a Feline Weight Management Programme. Example 2 shows three groups of osteoarthritic cats, each with different severity of disease. The third is an elderly, un-well cat whose HRQL was recorded over time, specifically to facilitate end of life discussion between owner and veterinary clinician.

Pediatric-onset multiple sclerosis is associated with reduced parental health–related quality of life and family functioning

2018 ◽  
Vol 25 (12) ◽  
pp. 1661-1672 ◽  
Author(s):  
Julia O’Mahony ◽  
Ruth Ann Marrie ◽  
Audrey Laporte ◽  
Amit Bar-Or ◽  
E Ann Yeh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Family Functioning ◽  
Disease Onset ◽  
Self Report ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Background: Diagnosis of multiple sclerosis (MS) during childhood has the potential to impact the affected child’s self-perception and the health-related quality of life (HRQoL) of the family. Objective: To evaluate the impact of chronic disease, in children ascertained as having MS and their families, when compared to those with monophasic acquired demyelinating syndrome (monoADS). Methods: In a national prospective cohort study of pediatric acquired demyelinating syndromes (ADS), the HRQoL of children and their families was captured using the Pediatric Quality of Life Inventory (PedsQL™) Modules. Results: Participants (58 MS; 178 monoADS) provided cross-sectional HRQoL data a median (interquartile range (IQR)) of 4.1 (2.0–6.0) years after disease onset. The HRQoL of parents of children with MS and their family functioning was lower when compared to that of parents and families of children with monoADS (both p < 0.001); parents of children with MS reported greater emotional dysfunction, worry, worse communication, and lower family functioning irrespective of clinical disease activity. Self-reports of the MS and monoADS participants did not suggest a difference in overall HRQoL or fatigue after adjusting for age of the child at the time of assessment. Conclusion: While children with MS did not self-report lower HRQoL compared to children who experienced monoADS, the diagnosis of MS during childhood was negatively associated with parental HRQoL and family functioning.

scholarly journals The impact of ocrelizumab on health-related quality of life in individuals with multiple sclerosis

2021 ◽  
Vol 7 (2) ◽  
pp. 205521732110075
Author(s):  
Bonnie I Glanz ◽  
Jonathan Zurawski ◽  
Emily C Casady ◽  
Rebecca Shamah ◽  
Mira Weiner ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Clinical Characteristics ◽  
Health Related Quality ◽  
Sf 36 ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Background Ocrelizumab is approved for the treatment of both relapsing and progressive multiple sclerosis (MS). Objective To examine the impact of ocrelizumab on health-related quality of life (HRQOL) in individuals with MS. Methods Ninety-eight individuals with relapsing and 32 with progressive MS were enrolled. Participants were administered a battery of patient-reported outcome (PRO) measures at their first ocrelizumab infusion, and infusions at 6 and 12 months. PRO measures included the Medical Outcomes Study SF-36 and Neuro-QoL. Results At baseline, participants had low mean scores across HRQOL domains. After 12 months, increases were observed on SF-36 Role-Physical, General Health, Vitality, Role-Emotional, Mental health and Mental Component Summary. On Neuro-QoL, improvements were seen in Positive Affect, Anxiety, Emotional and Behavioral Dyscontrol and Fatigue. Several demographic and clinical characteristics were associated with HRQOL at baseline. The strongest associations were between physical HRQOL measures and measures of MS disability. Associations between the longitudinal change in HRQOL scores and baseline demographic and clinical characteristics were mild. Conclusions We observed significant improvements across multiple mental HRQOL domains at 12 months in individuals treated with ocrelizumab. These findings support the use of HRQOL measures to provide a subjective measure of treatment impact that complements traditional outcomes.

scholarly journals Impact of Visual Impairment on Health-Related Quality of Life in Multiple Sclerosis

2010 ◽  
Vol 12 (2) ◽  
pp. 83-91 ◽  
Author(s):  
Vivek S. Pawar ◽  
Gauri Pawar ◽  
Lesley-Ann Miller ◽  
Iftekhar Kalsekar ◽  
Jan Kavookjian ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Visual Impairment ◽  
Life Questionnaire ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Impact

The aim of this study was to evaluate the impact of visual impairment on health-related quality of life (HRQOL) in patients with multiple sclerosis (MS). Patients at an outpatient MS clinic were asked to complete a battery of patient-reported outcome questionnaires. Health-related quality of life was measured using the Hamburg Quality of Life Questionnaire for Multiple Sclerosis (HAQUAMS), while visual impairment was measured using the Visual Function Questionnaire (VFQ). Hierarchical regression was used to determine the relative contribution of visual impairment to HRQOL. Usable responses were obtained for 116 MS patients. Those with higher levels of visual impairment (lower scores on the VFQ) reported significantly lower HRQOL (β = –0.01, P = .0007). Visual impairment also explained an additional 4% variance in the HRQOL scores, independent of disability and depression (ΔR2 = 0.04, F7,108 = 36.58). Overall, disability was the strongest predictor of HRQOL, explaining over 60% of the variation in HRQOL scores. The model explained 70% of the total variance in HRQOL. Given the prevalence of visual impairment and its influence on overall HRQOL, MS patients should be routinely screened using standard ophthalmic examination procedures or self-administered questionnaires such as the VFQ.

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

2006 ◽  
Vol 12 (2) ◽  
pp. 180-186 ◽  
Author(s):  
D M Miller ◽  
J A Cohen ◽  
M Kooijmans ◽  
E Tsao ◽  
G Cutter ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Controlled Trial ◽  
Progressive Multiple Sclerosis ◽  
Impact Study ◽  
Double Blind ◽  
Related Quality ◽  
Health Related ◽  
The Impact

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.

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