scholarly journals Maintaining quality of life in multiple sclerosis: fact, fiction, or limited reality?

2010 ◽  
Vol 68 (5) ◽  
pp. 726-730 ◽  
Author(s):  
Alina Gomide Vasconcelos ◽  
Vitor Geraldi Haase ◽  
Eduardo de Paula Lima ◽  
Marco Aurélio Lana-Peixoto

Health-related quality of life (HRQOL) is an important marker for health-related impacts on individuals with chronic diseases. This HRQOL study compares multiple sclerosis (MS) patients to a socio-demographically-matched healthy control group. HRQOL was assessed by means of a modular instrument (DEFU/DEFIS), which allows comparisons between diseased and healthy individuals. Main goal of the study was to obtain pertinent data to build a more reliable theoretical framework concerning HRQOL in MS. Another aim was to test the hypothesis of the so-called happiness paradox, according to which disabled individuals could maintain reasonable levels of HRQOL. Results show that MS individuals present lower levels of HRQOL in comparison to healthy controls, arguing against the happiness paradox hypothesis. Preservation of HRQOL levels against certain levels of disability may be restricted to a group of patients.

2001 ◽  
Vol 23 (2) ◽  
pp. 122-135 ◽  
Author(s):  
Georgina Sutherland ◽  
Mark B. Andersen ◽  
Mark A. Stoové

Individuals with multiple sclerosis (MS) are often advised not to participate in vigorous exercise. Leading a relatively sedentary life, however, may exacerbate the debilitating effects of MS. In this study, 22 people participated in either a no-special-activity group (n = 11) or an experimental group (n = 11) that involved water aerobics three times a week for 10 weeks. Measures taken included scales for health-related quality of life (HRQOL) and psychological well-being. ANCOVAs using social support and the appropriate pretest scores as covariates revealed that after the intervention, the exercise group had more energy and vigor (extremely large effect sizes). Other very large effects were found in the exercise group, which had better social and sexual functioning and less bodily pain and fatigue than the control group. Future research should involve long-term studies to determine whether exercise not only improves quality of life but also helps slow the progression of disease.


2013 ◽  
Vol 15 (1) ◽  
pp. 27-34 ◽  
Author(s):  
Sara Anne Tompkins ◽  
Jessica Ann Roeder ◽  
Jenifer J. Thomas ◽  
Kimberly K. Koch

Living with a chronic illness such as multiple sclerosis (MS) has significant psychosocial ramifications. In particular, the patient's relationship with a spouse or significant other is often negatively affected. Programs are needed to address the psychosocial challenges of the illness and help improve outcomes for both the person with MS and his or her romantic support partner. Relationship Matters (RM) is a relationship enrichment program that integrates information and resources of the National Multiple Sclerosis Society with empirically based marriage education. The purpose of this study was to examine the effectiveness of the RM program in increasing relationship satisfaction and aspects of health-related quality of life in couples living with MS over a 3-month follow-up period. Couples were given 8 hours of programming via in-person workshops disseminated across the country or teleconferences. A control group consisting of members of MS couples who did not receive the intervention was used for comparison. The results indicate that RM significantly improved relationship satisfaction over time compared with no intervention (P < .05). Additional findings include significant improvements in mental health–related quality of life as well as reported improvements in communication, conflict resolution, and ability to handle MS-specific relationship issues. Overall, these findings show that RM results in improved couple functioning and additional psychological health benefits for individuals with MS and their romantic support partners.


2021 ◽  
Vol 8 (Supplement_1) ◽  
pp. S25-S26
Author(s):  
Sebastiaan Siegerink ◽  
Marië Nijpels ◽  
Sander Albers ◽  
Frédérique Jurgens ◽  
Felix K Pettai ◽  
...  

Abstract Background The long-term effects of COVID-19 are still unknown. This study aims to assess the impact of COVID-19 among survivors after one year. Methods All confirmed COVID-19 cases who presented at OLVG hospital in Amsterdam during the first wave of the COVID-19 pandemic were invited to participate in our prospective observational cohort study. The participants were divided into three subgroups: patients not admitted, admitted to the general ward and admitted to the ICU. Questionnaires were sent at 3, 6 and 12 months after presentation. We used the Research and Development – 36-item health survey, the Hospital Anxiety and Depression Scale and the PTSS Checklist for DSM-5. We compared the RAND-36 scores at the timepoints with a Dutch healthy control population in 2020 and between the three subgroups using the Kruskal-Wallis test and the Mann-Whitney U test. Results Of the 466 confirmed cases, 75 patients died of COVID-19, 64 patients were lost to follow up and 12 patients were excluded because they were unable to complete the questionnaires due to mental illness or cognitive impairment, they moved back to their home country or refused to participate. Of the remaining 315 patients, 182 (57.8%) completed the questionnaires at 3 months. Subsequently, 163 patients provided informed consent for follow up. At 6 and 12 months, 98 (60.1%) and 131 (80.4%) completed the survey. The average score of all domains at 3 months was 58, compared to 79 at twelve months and 81 in the control group. There was a statistically significant increase from 3 and 12 and 6 and 12 months (figure 1). At twelve months participants recovered to levels of the healthy control group (N=459), except for the ICU group, who still experienced bodily pain and decreased physical function. The improvement was most noticeable in the domains of social functioning, role limitations – physical and role limitations – emotional. The percentage of patients with abnormal total HADS scores (cutoff at 16) and PCL5- scores (cutoff at 33) at 3 months decreased from 27.8 to 22.1% and 18.9 to 7.6% at 12 months, respectively (figure 2 and 3). Figure 1. RAND-36: Health-related quality of life after COVID-19 of all patients. Blue line is after 3 months, orange line is after 6 months, green line is after 12 months, yellow line is healthy control. The p-value in the right-upper corner shows statistical significant difference between all total scores, the asterisks indicate significance between groups. PF = physical functioning; SF = social functioning; RP = role limitations–physical; RE = role limitations–emotional; MH = mental health; VT = vitality; BP = pain; GH = general health; HC = health change. Figure 2 The blue column is after 3 months, the orange after 6 months and the green after 12 months. The numbers above the columns are percentages per group. Figure 3 The blue column is after 3 months, the orange after 6 months and the green after 12 months. The numbers above the columns are percentages per group. Conclusion Although, COVID-19 may cause a decreased health-related quality of life and impaired mental health, this study shows important recovery up to normal levels after one year. Disclosures All Authors: No reported disclosures


Author(s):  
Morteza Abdollahi ◽  
Mohsen Abbasi-Kangevari ◽  
Ali-Asghar Kolahi ◽  
Ahmad-Reza Farsar

AbstractThe objective of this study was to determine the quality-of-life (QoL) among children with epilepsy in comparison with a healthy control group. Participants included mothers of 206 children with epilepsy and of 211 healthy controls. The QoL was measured via cross-cultural adaptation of the Quality-of-Life in Children with Epilepsy Questionnaire, which was also modified for the control group. The mean (standard deviation) overall QoL score of children with epilepsy was lower than that of the healthy control group at: 74.3 (8.2) versus 87.9 (6.6), p < 0.001. In addition, all seven dimensions of quality-of-life were lower among children with epilepsy compared with that of the healthy control group. The health-related QoL of children with epilepsy was lower than that of the healthy control group. Children experiencing seizures more frequently, experiencing side effects from antiepileptic drugs, having a history of hospitalization, and having poor school performance displayed lower scores in QoL, which may highlight the impact of the severity of the disease and proper management of seizures on the quality-of-life in children with epilepsy.


2021 ◽  
pp. 105566562098769
Author(s):  
Mecheala Abbas Ali ◽  
Alwaleed Fadul Nasir ◽  
Shaza K. Abass

Objective: This study compared the oral health-related quality of life (OHRQoL) among children with a cleft lip with or without a cleft palate (CL±P) and a group of their peers. The reliability of the Arabic version of the Child Oral Health Impact Profile Questionnaire (COHIP) was also assessed. Design: A cross-sectional study. Settings: Cleft clinic in a private dental college in Omdurman City, Sudan. Patients: In all, 75 children (mean age 11.3 ± 2.5 years) with a history of CL±P and a group of 150 school children without CL±P (mean age 11.4 ± 2.6 years). Main Outcome Measures: Overall and subscale scores on the Arabic version of the COHIP. Results: Test–retest reliability of COHIP in Arabic was high with an interclass correlation coefficient >0.8. Cronbach α value internal consistency was 0.8 for the total scale and between 0.7 and 0.8 for the subscales. The COHIP score was 89.41 ± 19.97 in children with CL±P and 122.82 ± 9.45 for the control group. Children with CL±P had significantly lower scores on the overall and all subscales when compared to children without CL±P ( P ≤ .001). Among the children with CL±P, there were no statistically significant differences on the COHIP based on age and/or gender ( P ≥ .05). Conclusions: Children with CL±P had a relatively high OHRQoL, which was lower than that of their peers without CL±P in both the overall scale and all subscales. Gender and age differences had no significant impact on the OHRQoL. The COHIP Arabic version showed appropriate reliability.


Medicina ◽  
2020 ◽  
Vol 57 (1) ◽  
pp. 4
Author(s):  
I Re Heo ◽  
Ho Cheol Kim ◽  
Tae Hoon Kim

Background and Objectives: preserved ratio impaired spirometry (PRISm) is a common spirometric pattern that causes respiratory symptoms, systemic inflammation, and mortality. However, its impact on health-related quality of life (HRQOL) and its associated factors remain unclear. We aimed to identify these HRQOL-related factors and investigate the differences in HROOL between persons with PRISm and those with normal lung function. Materials and Methods: we reviewed the Korea National Health and Nutrition Examination Survey data from 2008 to 2013 to evaluate the HRQOL of persons with PRISm, as measured while using the Euro Quality of Life-5D (EQ-5D) and identify any influencing factors. PRISm was defined as pre-bronchodilator forced expiratory volume in 1 s (FEV1) <80% predicted and FEV1 to forced vital capacity (FVC) ratio (FEV1/FVC) ≥0.7. Individuals with FEV1 ≥80% predicted and FEV1/FVC ≥0.7 were considered as Controls. Results: of the 27,824 participants over the age of 40 years, 1875 had PRISm. The age- and sex-adjusted EQ-5D index was lower in the PRISm group than in the control group (PRISm, 0.930; control, 0.941; p = 0.005). The participants with PRISm showed a significantly higher prevalence of hypertension (p < 0.001), diabetes (p < 0.001), obesity (p < 0.001), low physical activity (p = 0.001), ever-smoker (p < 0.001), and low income (p = 0.034) than those in the control group. In participants with PRISm, lower EQ-5D index scores were independently associated with old age (p = 0.002), low income (p < 0.001), low education level (p < 0.001), and no economic activity (p < 0.001). Three out of five EQ-5D dimensions (mobility, self-care, and usual activity) indicated a higher proportion of dissatisfied participants in the PRISm group than the control group. Conclusions: the participants with PRISm were identified to have poor HRQOL when compared to those without PRISm. Old age and low socioeconomic status play important roles in HRQOL deterioration in patients with PRISm. By analyzing risk factors that are associated with poor HRQOL, early detection and intervention of PRISm can be done in order to preserve patients’ quality of life.


2021 ◽  
pp. 1-6
Author(s):  
Cihat Uzunköprü ◽  
Yesim Beckmann ◽  
Sabiha Türe

<b><i>Introduction:</i></b> The primary aim of the present study was to evaluate the long-term efficacy of fingolimod in patients with multiple sclerosis (MS); secondary aims were to describe the safety of fingolimod with the evaluation of treatment satisfaction and impact on the quality of life in real life. <b><i>Methods:</i></b> We collected clinical, demographical, neuroradiological, and treatment data, including pre- and posttreatment status health-related quality of life from 286 MS patients consecutively treated with fingolimod. Clinical assessment was based on the Expanded Disability Status Scale (EDSS), and quality of life assessment was performed with MS-related quality of life inventory (MSQOLI). The data were recorded at baseline and every 6 months for 2 years. <b><i>Results:</i></b> One hundred and fourteen males and 172 females were enrolled. The annualized relapse rate and EDSS showed a statistically significant reduction during the observation period (<i>p</i> &#x3c; 0.001). The patients also demonstrated substantial improvements in magnetic resonance imaging (MRI) outcomes (<i>p</i> &#x3c; 0.001). Health-related quality of life scores improved significantly between baseline and 24-month visit (<i>p</i> &#x3c; 0.001). No serious adverse events occurred. <b><i>Conclusion:</i></b> In our cohort, fingolimod treatment was associated with reduced relapse, MRI activity, and improved EDSS and MSQOLI scores. Additionally, fingolimod has been able to maintain its effectiveness over a considerable long period of treatment.


2013 ◽  
Vol 20 (2) ◽  
pp. 253-257 ◽  
Author(s):  
Mariko Kita ◽  
Robert J Fox ◽  
J Theodore Phillips ◽  
Michael Hutchinson ◽  
Eva Havrdova ◽  
...  

Multiple sclerosis (MS) has a significant impact on health-related quality of life (HRQoL) with symptoms adversely affecting many aspects of everyday living. BG-12 (dimethyl fumarate) demonstrated significant efficacy in the phase III studies DEFINE and CONFIRM in patients with relapsing–remitting MS. In CONFIRM, HRQoL was worse in patients with greater disability at baseline, and who relapsed during the study, and improved with BG-12 treatment. Mean Short Form-36 Physical Component Summary scores for BG-12 increased over 2 years and scores for placebo decreased. Coupled with clinical and neuroradiological benefits, these HRQoL results further support BG-12 as an effective oral treatment for relapsing MS.


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