A systematic approach to analyse health-related quality of life in multiple sclerosis: the GEDMA study

2004 ◽  
Vol 10 (1) ◽  
pp. 47-54 ◽  
Author(s):  
J M Morales-Gonzáles ◽  
J Benito-León ◽  
J Rivera-Navarro ◽  
A J Mitchell ◽  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Family Relationships ◽  
Primary Caregivers ◽  
Health Related Quality ◽  
Specific Protocol ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Objective: To describe a holistic and comprehensive approach to the assessment of sufferer’s perceptio ns of health-related quality of life (HRQ oL) in a cohort of multiple sclerosis (MS) patients. Methods: The G EDMA (Grupo de Enfermedades Desmielinizantes de Madrid, in Spanish) study is an ongoing longitudinal survey using quantitative and qualitative methodologies. The baseline cohort consisted of a large sample of MS patients recruited from 13 hospitals in Madrid, Spain. Using a standardized protocol we collected data concerning the sociodemographic and health status characteristics of patients, as well as implementing a modified Spanish version of the Functio nal A ssessment of Multiple Sclerosis quality of life instrument. Primary caregivers were interviewed using a specific protocol combined with the Zarit Burden Interview. Results: The index cohort comprised 371 MS patients (68.7% female) of mean age 38.9 ± 0.9 years. A ge, sex and clinical form distribution were similar to other MS population-based surveys. There were 258 (69.5%) relapsing-remitting (RR) MS patients and 113 (30.5%) progressive MS patients. More than one-third of the married patients with progressive MS and almost a quarter of the RRMS patients separated or divorced following a diagnosis of MS; 71.3% of the progressive MS patients as well as 65.8% of the RRMS patients were unemployed as a consequence of the disease. Q ualitative analysis showed that friendship and family relationships and occupational status were the most significant dimensions influenced by MS. O n the other hand, the speech analysis of primary caregivers showed that emotional burden was related to patients’ physical disability. Furthermore, primary caregivers described the influence of MS on their own occupatio nal status, their nonacceptance of the disease, a perceptio n of a lack of support by other members of the family as well as a ‘selfish and intransigent’ attitude of the patients themselves. Conclusions: The analysis of the G EDMA cohort provides valuable information that helps clarify the impact of MS on patients’ HRQ oL.

scholarly journals Impact of Pediatric COVID-19 on Family Health-Related Quality of Life: A Qualitative Study from Latvia

2021 ◽  
Vol 8 ◽  
pp. 2333794X2110123
Author(s):  
Inese Stars ◽  
Liene Smane ◽  
Zanda Pucuka ◽  
Ieva Roge ◽  
Jana Pavare
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Family Relationships ◽  
Family Health ◽  
Support Network ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Information on family health-related quality of life (FHRQoL) among families of children with the coronavirus disease 2019 (COVID-19) is limited. This qualitative study explores the impact of pediatric COVID-19 on FHRQoL from the parents’ perspective. Semi-structured interviews were conducted with parents (n = 20) whose children had tested positive for the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Inductive thematic analysis revealed the following 10 themes that represented parents’ perception of FHRQoL while taking care of a child with COVID-19: pediatric COVID-19 as a disease with many unknowns; emotional saturation; internal family relationships in the context of “a new experience”; routine household activities and daily regimen while family is in lockdown; plenty of free time; a wide social support network; social stigma associated with COVID-19; different options for work; savings and debts; challenges with family housing and transport availability. Our results show that parents experience multiple effects of pediatric COVID-19 with regard to FHRQoL.

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.

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.

scholarly journals Short Report: Impact of Sleep Disorders on Depression and Patient-Perceived Health-Related Quality of Life in Multiple Sclerosis

2019 ◽  
Vol 21 (1) ◽  
pp. 10-14 ◽  
Author(s):  
Emily K. White ◽  
Amy B. Sullivan ◽  
Michelle Drerup
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Sleep Disorders ◽  
Sleep Disorder ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Abstract Background: Sleep disorders in multiple sclerosis (MS) are associated with reduced health-related quality of life (HRQOL) and depression. However, research investigating and comparing how the two most common sleep disorders—insomnia and obstructive sleep apnea (OSA)—affect depression and HRQOL in MS is limited. The goal of this study is to examine the impact of diagnosed sleep disorders on patient-reported 1) HRQOL and 2) depressive symptoms in patients with MS. Methods: We performed a retrospective medical record review of 531 adult patients with MS: 287 (54%) with a comorbid sleep disorder (insomnia or OSA) and 244 (46%) without a diagnosed sleep disorder. Results: Neither 1) average ratings of depression or HRQOL nor 2) the proportion of moderate depression or moderately impaired HRQOL differed between individuals with MS and insomnia and those with MS and OSA. Neither sleep disorder predicted increased depression or poorer HRQOL. However, individuals with MS and a comorbid sleep disorder (insomnia or OSA) had poorer HRQOL compared with those without a diagnosed sleep disorder (MS only). Conclusions: Presence of a diagnosed sleep disorder may negatively affect HRQOL in MS. Providers should continue to screen for sleep disorders given their negative impact on patients with MS and the availability of effective treatments for insomnia and OSA.

scholarly journals 509 Health-Related Quality of Life in Narcolepsy: A Systematic Review and Meta-Analysis

SLEEP ◽  
2021 ◽  
Vol 44 (Supplement_2) ◽  
pp. A200-A201
Author(s):  
Ragy Tadrous ◽  
Deirdre O’Rourke ◽  
Julie Broderick ◽  
David Mockler
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Systematic Review ◽  
General Population ◽  
Meta Analysis ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Abstract Introduction Narcolepsy is a neurological condition that has been associated with considerable detriment to daily life including impaired quality of life, occupational and academic difficulties and adversely affected social and personal relationships. To date, there has been no systematic analysis of the literature regarding health-related quality of life (HRQoL) in Narcolepsy. This systematic review aimed to examine the impact of narcolepsy on HRQoL, measured through standardised HRQoL questionnaires such as the Short Form 36 (SF36). Methods Medline, Embase, Cinahl and Web of Science were searched for studies which investigated HRQoL in adults with narcolepsy. Studies were reviewed independently by two reviewers, and a random-effects meta-analysis was performed. The methodological quality of the included studies was assessed using a modified version of the Joanna Briggs Institute Checklist for Analytical Cross Sectional Studies tool. The impact of study variables and characteristics on HRQoL was assessed using Spearman’s Correlation analyses with adjusted r2 values. Results A total of 30 studies were eligible for inclusion in the review. Additionally, meta-analyses were conducted for the SF36 and the EQ5D. The SF36 meta-analysis identified that the pooled mean scores for the Physical Component Summary (45.91) were less affected than the Mental Component Summary (42.98). The HRQoL of people with narcolepsy was compared to general population norms (US, UK, France and Norway) and to people with chronic diseases including multiple sclerosis, diabetes, and epilepsy. Conclusion People with narcolepsy report significant impairments in HRQoL when compared to the general population and other chronic health conditions including epilepsy, multiple sclerosis, diabetes and hypertension, especially concerning their mental wellbeing. Further research is warranted to identify the longitudinal effects of narcolepsy on HRQoL and to develop a narcolepsy-specific HRQoL tool. Support (if any) This review was completed as part of Mr Ragy Tadrous’ Master of Science (MSc) degree in Trinity College Dublin. This degree was co-sponsored by the Physiotherapy Department in St. James’s Hospital, Dublin.

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