scholarly journals Fatigue and physical functioning in children with multiple sclerosis and acute disseminated encephalomyelitis

2017 ◽  
Vol 24 (7) ◽  
pp. 982-990 ◽  
Author(s):  
Leontien CC Toussaint-Duyster ◽  
Yu Yi M Wong ◽  
Monique HM Van der Cammen-van Zijp ◽  
Daniëlle Van Pelt-Gravesteijn ◽  
Coriene E Catsman-Berrevoets ◽  
...  

Background and Objective: Fatigue and physical impairments are a major concern in children with multiple sclerosis (MS) and after acute disseminated encephalomyelitis (post-ADEM). We here aimed to evaluate the interaction between fatigue, exercise capacity, motor performance, neurological status, and quality of life (HRQoL). Methods: In this cross-sectional study, data of 38 children (MS n = 22, post-ADEM n = 16), aged 4–17 years attending our national pediatric MS center, were studied. Fatigue was measured with the Pediatric Quality of Life Multidimensional Fatigue Scale, exercise capacity with the Bruce Protocol, motor performance with the Movement Assessment Battery for Children second edition, HRQoL with the Pediatric Quality of Life Questionnaire, and extent of disability with the Expanded Disability Status Scale (EDSS). Results: Children with MS and post-ADEM experienced more fatigue ( p < 0.001), reduced exercise capacity ( p < 0.001), and impaired motor performance ( p < 0.001), despite low scores on the EDSS. Fatigue, but not the other parameters, was significantly correlated with HRQoL. Fatigue was not correlated with exercise capacity. Conclusion: We confirm the major impact of fatigue on quality of life in children with MS and post-ADEM. Fatigue was not explained by reduced exercise capacity or impaired motor performance. An important finding for clinical practice is that the low EDSS score did not reflect the poor physical functioning.

2018 ◽  
Vol 64 (4) ◽  
Author(s):  
Alicja Jeżuchowska

ABSTRACTIntroduction: Multiple sclerosis is a chronic autoimmune disease, usually occurring between 20 and 40 years of age, where central nervous system demyelination occurs.Materials and methods: After establishing cooperation with 5 departments of the Polish Society of Multiple Sclerosis in Poland and the Rehabilitation Center in Krakow, 179 questionnaires were obtained from people with multiple sclerosis. The study used diagnostic survey methods and standardized Quality of Life Questionnaire Short Form 36.Results: The largest group were women, 72.63%, the average disease duration was 13.18 years, the lowest quality of life values were the domain of social functioning 3.23 ±2.0 points, pain sensation 4.44 ±2.7 points and limitations resulting from the emotional state 8.02 ±6.8 points. A statistically significant correlation was found between age, sex, duration of the disease (p < 0.05) in selected domains and dimensions. The results of the analysis showed statistically significant correlations between the symptoms of the disease and the quality of life assessment in individual categories and dimensions (p < 0.05).Conclusions: 1. Assessment of the quality of life by patients with multiple sclerosis in particular domains is very diverse, with the lowest ranked domain concerning social contacts, the highest domain physical functioning and physical dimension. 2. Elderly people and those who have been suffering from multiple sclerosis for longer have rated their quality of life worse than younger and shorter suffering people. This applies mainly to the domain of physical functioning and the physical dimension. This is probably due to the disease process and adaptation to the changing conditions dictated by the progressive disease. 3. The severity of disease symptoms in people with multiple sclerosis is associated with a decrease in the quality of life of these people.


2019 ◽  
Vol 5 (4) ◽  
pp. 151-160
Author(s):  
Alia Saberi ◽  
◽  
Hamidreza Hatamian ◽  
Amirreza Ghayeghran ◽  
Fatemeh Mola Hosseini ◽  
...  

Background: Multiple Sclerosis (MS) is a chronic demyelinating, inflammatory, and degenerative disease of the central nervous system. MS gradually limits and deteriorates the patients’ quality of life. Objectives: This study aimed to evaluate and compare the quality of life in patients with MS consuming Fingolimod and Cinnovex. Materials & Methods: In an analytical cross-sectional study, 106 patients with Relapsing-Remitting MS (RRMS) referred to specialized neurology clinics of Guilan University of Medical Sciences were selected for the study using a convenience sampling method (52 patients consuming Fingolimod and 54 patients consuming Cinnovex). Then, we collected their demographic information and medical profile. The patients were assessed by the Hamburg quality of life questionnaire in MS. The obtained data were analyzed in SPSS V. 22 using the Chi-square test, independent t-test, Mann-Whitney U, one-way and multivariate analysis of covariance. Results: There was a significant difference between the two groups in terms of age, number of attacks in the last 6 months, and educational level (P<0.05). After controlling confounding variables, it was found that consumers of Fingolimod had a better quality of life. At the subscales level, this difference was significant only in the mood dimension (F=6.931, P=0.011, η=0.12). Conclusion: Patients consuming Fingolimod reported a better quality of life compared to consumers of Cinnovex. This improvement was mainly found in mood scores.


2021 ◽  
Vol 11 (7) ◽  
pp. 672
Author(s):  
Alessandra Buja ◽  
Guendalina Graffigna ◽  
Simona F. Mafrici ◽  
Tatjana Baldovin ◽  
Carlo Pinato ◽  
...  

Ensuring multiple sclerosis (MS) patients’ adherence to therapy is often challenging, but it is crucial to their survival and health-related quality of life (HRQoL). The aim of the present study was to outline connections between adherence, physical and mental HRQoL, levels of psychological readiness to engage in a treatment, levels of social support, anthropometric, socio-demographic and clinical factors in patients suffering from MS. This cross-sectional study involved a sample of 237 Italian MS patients. A survey was conducted with a structured self-administered online questionnaire using validated measures of quality of life, adherence to therapy and anthropometric, socio-demographic, psychological and clinical variables. A path analysis was used to test the overall structure of the associations between the variables. The pathway indicates a positive association between mental health index and a stronger degree of engagement and being or having been in a long-term relationship. Physical health index was positively associated with age, having an occupation, and having a specific form of MS. Having had relapses in the previous year raised the odds of better adherence to therapy, while an increase in Body Mass Index (BMI) reduced them. Our findings could help in the management of MS patients, promoting behavioral interventions that take the psychological and socio-demographic peculiarities of each patient into account with a view to improving their adherence to therapy.


Author(s):  
Rafael Turano Mota ◽  
Helder Márcio Ferreira Júnior ◽  
Fabiane Silva Pereira ◽  
Maria Aparecida Vieira ◽  
Simone de Melo Costa

Abstract Objective: To characterize scientific publications on the quality of life of people with lung cancer in order to explore current knowledge of the subject, with emphasis on assessment instruments and methodological aspects. Method: A scoping type literature review was performed. Articles were sought in the databases of the Virtual Health Library, in an integrative manner, with the descriptors: Quality of life and Lung Neoplasms, with no date of publication or language restrictions (n=138). The selection of articles was based on inclusion and exclusion criteria defined in the study proposal. Results: We included 18 publications published between 2006 and 2017, the majority (n = 10) of which had a cross-sectional design. Eight different instruments were used to evaluate the quality of life of patients with lung cancer, four of which were specific for people with cancer. There was a prevalence of the use of the European Organization for Research and Treatment of Cancer Care Quality of Life Questionnaire - EORTC QLQ-C30 (n=8). Prospective studies (n=8) assessed quality of life before and after chemotherapy, physical therapy or pulmonary resection. The studies adopted different methodologies and provided conflicting results of quality of life. Cross-sectional studies with comparatively healthy subjects found an inferior quality of life for people with lung cancer. Conclusion: The scoping review contributed to the identification of the multiple evaluated instruments, both generic and specific. It found a lack of homogeneity in the methodological approaches of the studies. Further prospective studies with a specific instrument and methodological standardization to evaluate the quality of life of people with lung cancer are recommended.


2021 ◽  
Vol 7 (1) ◽  
pp. 205521732199604
Author(s):  
Sabina David Ruban ◽  
Claudia Christina Hilt ◽  
Thor Petersen

Background Multiple sclerosis is a chronic disease leading to reduced quality of life. Objectives To investigate whether motor and cognitive fatigue impact differently on aspects of quality of life among patients with multiple sclerosis, independently from bodily disability. Methods 79 patients with multiple sclerosis from Aalborg University Hospital, Denmark were included in an observational, cross-sectional study. Each subject completed two separate questionnaires regarding fatigue (Fatigue Scale for Motor and Cognitive Functions and Modified Fatigue Impact Scale) and one regarding quality of life (Short Form 36). Disability was measured with the Expanded Disability Status Scale (EDSS)-scores obtained from patient records. Results All fatigue scores were significantly correlated to all areas of quality of life (p < 0,05). This remained significant after adjustment for age, disease duration and EDSS-score. When looking at each type of fatigue separately, cognitive fatigue correlated mainly with mental health aspects of quality of life and motor fatigue with physical health areas of quality of life. Conclusion Increased motor and cognitive fatigue lead to a differential reduction in physical and mental quality of life, independently of bodily disability. This underlines the importance of proper assessment and treatment of fatigue among patients with multiple sclerosis.


2002 ◽  
Vol 8 (6) ◽  
pp. 527-531 ◽  
Author(s):  
C-H Chang ◽  
D Cella ◽  
O Fernández ◽  
G Luque ◽  
P de Castro ◽  
...  

Objective: The cross-sectional study evaluated the psychometric properties of the Functional Assessment of Multiple Sclerosis (FAMS) Spanish version and its use in measuring quality of life (QOL) of multiple sclerosis (MS) patients in Spain. Methods: The FAMS is a factorially derived self-report scale designed to assess six primary aspects of QOL of patients with MS: Mobility, Symptoms, Emotional Well-Being, General Contentment, Thinking and Fatigue, and Family/Social Well-Being. Its Spanish translated version was used to assess QOL of 625 MS patients recruited in an outpatient clinic setting from 58 hospitals in Spain. Internal consistency of the Spanish FAMS was evaluated. Multiple regression analyses were performed to identify significant predictors from demographic, clinical and treatment characteristics, and Kurtzke Expanded Disability Status Scale (EDSS) scores in predicting FAMS scale scores. Results: Most of the patients are females (66%), and 74% were of the relapsing-remitting (RR) clinical subtype. Cronbach’s alpha coefficients were high (range=0.78-0.96), indicating subscale homogeneity comparable to that of the original English version. Linear multivariate regression analyses revealed that the EDSS is a dominant variable in predicting all the FAMS subscales, especially mobility (R2=0.51) and the total scores. Conclusions: The Spanish FAMS is a psychometrically valid instrument that allows clinicians and clinical researchers the ability to measure the QOL concerns of MS patients in Spain.


2017 ◽  
Vol 135 (4) ◽  
pp. 332-338 ◽  
Author(s):  
Letícia Baltieri ◽  
Luiz Claudio Martins ◽  
Everton Cazzo ◽  
Débora Aparecida Oliveira Modena ◽  
Renata Cristina Gobato ◽  
...  

ABSTRACT CONTEXT AND OBJECTIVE: The combined effect of obesity and asthma may lead to significant impairment of quality of life (QOL). The aim here was to evaluate the prevalence of asthma among obese individuals, characterize the severity of impairment of quality of life and measure its relationship with pulmonary function. DESIGN AND SETTING: Observational cross-sectional study in public university hospital. METHODS: Morbidly obese individuals (body mass index &gt; 40 kg/m2) seen in a bariatric surgery outpatient clinic and diagnosed with asthma, were included. Anthropometric data were collected, the Standardized Asthma Quality of Life Questionnaire (AQLQ(S)) was applied and spirometry was performed. The subjects were divided into two groups based on the median of the score in the questionnaire (worse &lt; 4 and better &gt; 4) and were compared regarding anthropometric data and pulmonary function. RESULTS: Among the 4791 individuals evaluated, 219 were asthmatic; the prevalence of asthma was 4.57%. Of these, 91 individuals were called to start multidisciplinary follow-up during the study period, of whom 82 answered the questionnaire. The median score in the AQLQ(S) was 3.96 points and, thus, the individuals were classified as having moderate impairment of their overall QOL. When divided according to better or worse QOL, there was a statistically difference in forced expiratory flow (FEF) 25-75%, with higher values in the better QOL group. CONCLUSION: The prevalence of asthma was 4.57% and QOL was impaired among the asthmatic obese individuals. The worst QOL domain related to environmental stimuli and the best QOL domain to limitations of the activities. Worse QOL was correlated with poorer values for FEF 25-75%.


2019 ◽  
Vol 5 (1) ◽  
pp. 53
Author(s):  
Ilsa Hunaifi ◽  
Pujiarohman Pujiarohman

troke is a leading cause of mortality and morbidity in Indonesia.  Post stroke patients has a higher disability hence results in poor quality of life compared with normal population. In Indonesia, studies related to the quality of life of post-stroke patients are scarce, so studies are required to explore the quality of life of post-stroke patients, particularly in West Nusa Tenggara. Aim of this study is to determine the epidemiology of quality of life for post-stroke patients in West Nusa Tenggara. Methods of this study is An Observational with cross-sectional design was performed in population of post-stroke patients admitted to West Nusa Tenggara General Hospital. The quality of life of post stroke patient was evaluated with SSQOL (Stroke Specific Quality of Life) questionnaire. The collected data was analyzed by the appropriate test. Result of this study is the average age of subject is 60.33±10.68 years. Hypertension is a major risk factor of stroke. The average SSQOL score is 177.02±45.75. SSQOL assesses 4 dimension are physical, functional, psychological and social health. Based on the physical dimension, the average score is 17.00, the functional dimension, the average score is 14.91, the psychological dimension, the average score is 13.17 and the social health dimension  the average score is 13.44.  The quality of life for post-stroke patients in West Nusa Tenggara General Hospital is good.


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