scholarly journals The impact of disabilities on quality of life in people with multiple sclerosis

2008 ◽  
Vol 14 (7) ◽  
pp. 972-980 ◽  
Author(s):  
K Wynia ◽  
B Middel ◽  
JP van Dijk ◽  
JHA De Keyser ◽  
SA Reijneveld

Objective People with Multiple Sclerosis (MS) experience lower levels of quality of life (QOL) than people from the general population. We examined the relative impact of MS-related disabilities on QOL. Method Data were obtained from a sample of 530 patients who completed the Multiple Sclerosis Impact Profile (MSIP), a disability measure based on the International Classification of Functioning,Disabilities and Health (ICF) and two generic health-related QOL measures, the Medical Outcome study Short Form Questionnaire (SF-36) and the World Health Organization Quality Of Life-BREF (WHOQOL-BREF). The impact of disabilities on QOL was estimated using hierarchical multiple regression analyses after controlling for the clinical course of MS. Results Disabilities contributed to a unique and substantial extent to QOL variance. “Impairments in mental functions” was the most important QOL predictor. “Fatigue” showed the highest prevalence and severity scores, while the impact on QOL was limited. The estimated impact on QOL appeared to be dependent on the applied QOL measure: the WHOQOL-BREF was sensitive to disabilities related to all four ICF components, while the SF-36 was only sensitive to disabilities belonging to the 'body functions' and ‘activities’ components. Conclusion Treatment programmes should target impairments in cognitive functioning, emotional functioning and sleep. Interventions are best evaluated using the WHOQOL-BREF.

2009 ◽  
Vol 11 (4) ◽  
pp. 402-412 ◽  
Author(s):  
Sumit Thakar ◽  
Solomon Christopher ◽  
Vedantam Rajshekhar

Object In this study, the authors assessed the construct validity and the reliability of the World Health Organization Quality of Life–Bref (WHOQOL-Bref) questionnaire in patients with cervical spondylotic myelopathy (CSM) and compared the performance of the WHOQOL-Bref and the 36-Item Short Form Health Survey (SF-36) in assessing quality of life (QOL) in patients with CSM. Methods In this prospective study, 70 patients with CSM were assessed preoperatively and again 1 year after central corpectomy using the Nurick scale, the SF-36, and the WHOQOL-Bref. Construct validity and reliability of the WHOQOL-Bref, its responsiveness compared with that of the SF-36, and the correlations between the 2 scales were studied. Results The WHOQOL-Bref was found to be valid (p < 0.001, Cuzick test for trend between the physical domain of the WHOQOL-Bref and Nurick grade) and reliable (Cronbach α > 0.7). It had smaller floor and ceiling effects (ranges 1.4–7.1% and 0–7.1%, respectively) than the SF-36 (ranges 2.9–71.4% and 0–14.1%, respectively). There was significant postoperative improvement in patient scores on all the SF-36 scales (p < 0.001) and the physical, psychological, and environment domains of the WHOQOL-Bref (p < 0.001). The SF-36 scales were more responsive to change (relative efficiency range 0.24–1) than the WHOQOL-Bref domains (relative efficiency range 0.002–0.73). Among scales measuring similar concepts, only the physical functioning and bodily pain scales of the SF-36 had a moderate correlation (r = 0.57 and 0.53, respectively; p < 0.001) with the physical domain of WHOQOL-Bref. Many of the scales of these 2 QOL instruments unexpectedly had a fair correlation with one another (r range = 0.2–0.4). Conclusions The WHOQOL-Bref, like the SF-36, is valid and reliable in assessing outcome in patients with CSM. It measures impairment in CSM in a more uniform manner than the SF-36, but its domains are less responsive to postoperative changes. Because the WHOQOL-Bref measures different constructs and has additive value, it should be used along with the SF-36 for QOL assessment in patients with CSM.


2012 ◽  
Vol 46 (1) ◽  
pp. 166-179 ◽  
Author(s):  
Gabrielle Cristine Moura Fernandes Pucci ◽  
Cassiano Ricardo Rech ◽  
Rogério César Fermino ◽  
Rodrigo Siqueira Reis

OBJETIVO: Sintetizar e analisar as evidências da literatura sobre a associação entre atividade física e qualidade de vida. MÉTODOS: Revisão sistemática nas bases PubMed, Lilacs e SciELO com utilização dos descritores "physical activity", "motor activity", "exercise", "walking", "running", "physical fitness", "sport", "life style", "quality of life", "WHOQOL" e "SF". Foram selecionados 38 estudos publicados entre 1980 e 2010 que utilizaram algum instrumento de medida da atividade física e com alguma versão dos questionários Medical Outcomes Study 36-Item Short-Form Health Survey ou World Health Organization Quality of Life para avaliar a qualidade de vida. RESULTADOS: A maioria dos estudos apresentou delineamento transversal (68%), 18% foram experimentais, 8% de acompanhamento prospectivo (coorte) e 5% com delineamento misto (transversal e longitudinal). O questionário mais utilizado para avaliar a qualidade de vida foi o SF-36 (71%) e a atividade física foi auto-reportada em 82% dos estudos. Maior nível de atividade física associou-se à melhor percepção de qualidade de vida em idosos, adultos aparentemente saudáveis ou em diferentes condições de saúde. CONCLUSÕES: A associação entre atividade física e qualidade de vida é positiva e varia de acordo com o domínio analisado.


2021 ◽  
pp. 1-10
Author(s):  
Sevki Sahin ◽  
Sibel Karsidag ◽  
Nilgun Cinar ◽  
Miruna Florentina Ates ◽  
Serkan Demir ◽  
...  

<b><i>Background:</i></b> Coronavirus disease 2019 (COVID-19) pandemic and lockdown period may induce an impairment in quality of life (QoL), disruption in treatment (DIT), and posttraumatic stress disorder (PTSD) in chronic neurological diseases (CNDs). To reach this information, a multicenter, cross-sectional study (COVQoL-CND) was planned. Parkinson’s disease (PD), headache (HA), multiple sclerosis (MS), epilepsy (EP), polyneuropathy (PNP), and cerebrovascular disease (CVD) were selected as the CND. <b><i>Methods:</i></b> The COVQoL-CND study includes demographic data, the World Health Organization Quality of Life short form (WHOQOL-BREF), and Impact of Event Scale-Revised (IES-R) forms. <b><i>Results:</i></b> The mean age of a total of 577 patients was 49 ± 17 (19–87 years), and the ratio of female/male was 352/225. The mean age of patients with PD, HA, MS, EP, PNP, and CVD were 65 ± 11, 39 ± 12, 38 ± 10, 47 ± 17, 61 ± 12, and 60 ± 15 years, respectively. The IES-R scores were found to be higher in the younger group, those with comorbid disease, contacted with CO­VID-19 patients, or diagnosed with COVID-19. In the group with a high IES-R score, the rate of DIT was found to be high. IES-R scores were negatively correlated with QoL. IES-R total scores were found highest in the CVD group and lowest in the PD group. The ratio of DIT was found highest in the PNP group and the lowest in the EP group. Contact with CO­VID-19 patients was high in the EP and HA group. <b><i>Conclusions:</i></b> The results of the COVQoL-CND study showed that lockdown causes posttraumatic stress and deterioration in the QoL in CND.


Author(s):  
Stefano Tozza ◽  
Dario Bruzzese ◽  
Daniele Severi ◽  
Emanuele Spina ◽  
Rosa Iodice ◽  
...  

Abstract Introduction In Charcot-Marie-Tooth type 1A (CMT1A) patients, daily life is mainly influenced by mobility and ambulation dysfunctions. The aim of our work was to evaluate the perception of disturbances that mostly impact on daily life in CMT1A patients and its difference on the basis of age, gender, disability, and quality of life. Methods Forty-one CMT1A patients underwent neurological assessment focused on establishing clinical disability through the Charcot-Marie-Tooth Neuropathy Score (CMTNS) and quality of life through the Short Form-36 (SF-36) questionnaire. We identified from CMT disturbances 5 categories [weakness in lower limbs (WLL), weakness in upper limbs (WUL), skeletal deformities (SD), sensory symptoms (SS), balance (B)] and patients classified the categories from the highest to the lowest impact on daily life (1: highest; 5: lowest). Ranking of the 5 categories, in the overall sample and in the different subgroups (dividing by gender, median of age and disease duration, CMTNS, domains of SF-36), was obtained and differences among subgroups were assessed using a bootstrap approach. Results Rank analysis showed that WLL was the most important disturbance on daily life whereas WUL had the lowest impact. In the older CMT1A group, the most important disturbance on daily life was B that was also the most relevant disturbance in patients with a greater disability. SD influenced daily life in younger patients. SS had less impact on daily life, with the exception of patients with a milder disability. Discussion Our findings demonstrated that the perception of disturbances that mostly impact on CMT1A patients’ daily life changes over the lifetime and with degree of disability.


Author(s):  
Eman M. Khedr ◽  
Rania M. Gamal ◽  
Sounia M. Rashad ◽  
Mary Yacoub ◽  
Gellan K. Ahmed

Abstract Background Depression is common in systemic lupus erythematosus (SLE) and is an unmeasured risk factor, yet its symptoms can be neglected in standard disease evaluations. The purpose of this study was to assess the frequency and the impact of depression on quality of life in SLE patients. We recruited 32 patients with SLE and 15 healthy control volunteers in the study. The following investigations were undertaken in each patient: clinical and rheumatologic assessment, SLE Disease Activity Index-2k (SLEDAI-2k), Beck Depression Inventory (BDI), Short-Form Health Survey (SF-36) questionnaire, and routine laboratory tests. Results There was a high percentage of depression (46.9%) in the SLE patients. Regarding quality of life (SF-36), there were significant affection of the physical and mental composite summary domains (PCS and MCS) scores in lupus patients compared with controls (P < 0.000 for both) with the same significant in depressed compared with non-depressed patients. SF-36 subscales (physical function, limit emotional, emotional wellbeing, and social function) were significantly affected in depressed lupus patients compared with non-depressed patients. There was a significant negative correlation between the score of MCS domain of SF-36 with BDI (P < 0.000) while positive correlation between SLEDAI score with depression score. In contrast, there were no significant correlations between MCS or PCS with age, duration of illness, or SLEDAI-2K. Conclusions Depression is common in SLE patients and had a negative impact on quality of life particularly on MCS domain and positive correlation with disease severity score. Trial registration This study was registered on clinical trial with registration number: NCT03165682 https://clinicaltrials.gov/ct2/show/NCT03165682 on 24 May 2017.


2021 ◽  
Vol 10 (2) ◽  
pp. 289 ◽  
Author(s):  
Maria Stella Epifanio ◽  
Federica Andrei ◽  
Giacomo Mancini ◽  
Francesca Agostini ◽  
Marco Andrea Piombo ◽  
...  

The COVID-19 pandemic that has hit the world in the year 2020 has put a strain on our ability to cope with events and revolutionized our daily habits. On 9 March, Italy was forced to lockdown to prevent the spread of the infection, with measures including the mandatory closure of schools and nonessential activities, travel restrictions, and the obligation to spend entire weeks in the same physical space. The aim of this study was to assess the impact of the COVID-19 pandemic and lockdown measures on quality of life (QoL) in a large Italian sample, in order to investigate possible differences in QoL levels related to both demographic and pandemic-specific variables. A total of 2251 Italian adults (1665 women, mainly young and middle adults) were recruited via a snowball sampling strategy. Participants were requested to answer to an online survey, which included demographic and COVID-related information items, and the World Health Organization Quality of Life BREF questionnaire (WHOQOL-BREF). The results showed statistically significant differences in QoL depending on a number of variables, including sex, area of residence in Italy, and being diagnosed with a medical/psychiatric condition. To our knowledge, this is the first study to assess QoL during COVID-19 pandemic in Italy, therefore the present findings can offer guidelines regarding which social groups are more vulnerable of a decline in QoL and would benefit of psychological interventions.


2020 ◽  
Vol 66 (2) ◽  
Author(s):  
Marta Stanisz ◽  
Ewelina Kolak ◽  
Dorota Branecka-Woźniak ◽  
Renata Robaszkiewicz-Boukaz ◽  
Przemysław Ciepiela ◽  
...  

Introduction: Breast cancer is the most common malignancy among women, and is usually treated surgically. Mastectomy has a great influence on the mental and physical condition of women. Breast reconstruction offers them a chance to improve their quality of life (QOL) and self-image.The main aim of the study was to gain knowledge about the impact of breast reconstruction on the QOL of women following mastectomy, and an analysis of the QOL after breast reconstruction, in the context of prosthesis effect assessment.Materials and methods: The study comprised 100 women following breast reconstructive surgery involved in 1 of the 7 “Amazon Clubs” (post-mastectomy women’s associations) in the West Pomeranian Voivodeship, northwest Poland. The study was based on the author’s questionnaire, and a shortened standardized version of the World Health Organization Quality of Life-BREF (WHOQOL-BREF) questionnaire. Statistical calculations were performed with StatSoft Statistica v10 software, adopting a significance level of p < 0.05.Results: The women who decided to have breast reconstruction surgery, noticed improved well-being (67%) and experiencedan increase in self-confidence (61%). The vast majority ofthe patients surveyed (93%) were satisfied with the effectof the prosthesis. Statistically significant differences in QOL were observed in the following spheres: rest and sleep, work capacity, negative feelings, and financial resources (p < 0.05) in relation to the evaluation of the prosthesis effect.Conclusions: 1. Breast reconstruction has a positive influence on improvements in well-being, increasing self-esteem, and the assessment of a more attractive appearance in women of all ages. 2. Breast reconstruction surgery has a positive impact on QOL and health in the physical, psychological, and environmental domains, especially in the women who are satisfied with the effects of the surgery. 3. A negative assessment of the breast reconstruction effect has an adverse influence on QOL. Identifying the factors affecting dissatisfaction with the post-operative outcome is crucial for a complete understanding of the subject, and for implementing measures aimed at improving the QOL of these women.Keywords: quality of life; mastectomy; breast cancer; breast reconstruction; breast surgery.


2005 ◽  
Vol 33 (3) ◽  
pp. 227-242 ◽  
Author(s):  
Glen D. Edwards ◽  
Art W. Bangert ◽  
Gregory Cooch ◽  
Naotaka Shinfuku ◽  
Tao Chen ◽  
...  

The World Health Organization Quality of Life-100 (WHOQOL-100, Power, Harper, Bullinger, & WHO1QLG), the Self-Rating Anxiety Scale (Zhang, 1993), and the Self-Rating Depression Scale (Zhang, 1993) were used to determine whether Chinese college students from only child and sibling child families rated perceptions of their quality of life differently. Small to moderate significant differences were found when comparing only students to sibling students on the WHOQOL-100 with no significant differences on measures of anxiety and depression. These results suggest that only students do not differ greatly from sibling students in terms of their overall perceptions of their quality of life. A unique characteristic of this study was that it targeted older college students born after implementation of the one-child-per-family policy in China. Also, self-rating instruments were used to gain a greater holistic understanding of the emotional well-being, physical state and social functioning of students. Several psychosocial and economic reasons, including methodological issues related to this study's findings, were discussed.


2009 ◽  
Vol 11 (1) ◽  
pp. 17-24 ◽  
Author(s):  
Deborah M. Miller ◽  
Craig Kollman ◽  
Andrea Kalajian ◽  
Paul W. O'Connor ◽  
R. Philip Kinkel

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 &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 &gt; .001 but &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.


2011 ◽  
Vol 17 (10) ◽  
pp. 1238-1249 ◽  
Author(s):  
Oscar Fernández ◽  
Karine Baumstarck-Barrau ◽  
Marie-Claude Simeoni ◽  
Pascal Auquier ◽  

Background: Multiple sclerosis (MS) can have psychological and socioeconomic consequences that affect patients’ health-related quality of life (HRQoL) as much as physical disability. Objective: To determine the clinical and sociodemographic factors affecting HRQoL in a large international study using the MS International QoL (MusiQoL) questionnaire. Methods: Patients aged >18 years with a diagnosis of MS for >6 months or clinically isolated syndrome (CIS) were enrolled. Sociodemographic and clinical data were recorded, and patients completed the MusiQoL and 36-item short form (SF-36) health survey questionnaires. Results: In total, 1992 patients from 15 countries were enrolled (mean [standard deviation] age: 42.3 [12.5] years; 70.5% women; 70.4% with relapsing–remitting MS). Multivariate multiple regression analyses identified lower educational level, higher Expanded Disability Status Scale (EDSS) score, cognitive impairment, being single and shorter time since last relapse as significant predictors of lower MusiQoL global index scores ( p < 0.05). Older age, female sex, higher EDSS score, shorter time since last relapse and receiving current MS treatment were significant predictors of lower SF-36 physical component summary scores ( p < 0.05). The SF-36 mental component summary score was linked to occupational status, inpatient/outpatient status, time since last relapse, and whether the patient was receiving MS treatment ( p < 0.05). Conclusion: Sociodemographic and clinical factors are linked to HRQoL in patients with MS. Interventions that affect these factors might be expected to influence HRQoL.


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