Factors Influencing Health-Related Quality of Life of Patients with Multiple Sclerosis and Their Caregivers

2020 ◽  
Vol 83 (4) ◽  
pp. 380-388
Author(s):  
Radka Bužgová ◽  
Radka Kozáková ◽  
Monika Škutová
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Emotional Functioning ◽  
Neurological Diseases ◽  
Symptom Burden ◽  
Severity Of Illness ◽  
Well Being ◽  
Cross Sectional Study ◽  
Cross Sectional

Background: Only a few studies have been done focusing on the quality of life (QoL) of patients with multiple sclerosis (MS) as well as their family members. The aim of our research was to determine the factors that influence the QoL of MS patients in advanced stage of disease and their caregivers. Methods: The sample of the cross-sectional study included 153 patients with MS and 74 caregivers. QoL was measured using the PNDQoL questionnaire (Progressive Neurological Diseases Quality of Life), and the severity of illness was assessed through the following scales: EDSS (Expanded Disability Status scale), PPS (Palliative Performance Scale), and ADL (Activity Daily Living). Results: The following predictors of the global QoL of the MS patients were identified – age, EDSS, symptom burden, daily care, emotional functioning, and spiritual_nonreligion functioning (R2 = 0.569; F = 32.900; p < 0.001). The following predictors of the global QoL of caregivers were identified – age, emotional functioning, spiritual_nonreligion functioning, patient’s QoL, and feeling of care (R2 = 0.431; F = 18.690; p < 0.001). Conclusion: Appropriate intervention should be directed particularly at older patients and caregivers who have faced the disease for longer time and at patients without any partner. Supporting the emotional and social well-being and mitigating the burden caused by symptoms of the patients as well as caregivers can improve the QoL of both groups.

Quality of life in multiple sclerosis patients in Spain

2002 ◽  
Vol 8 (6) ◽  
pp. 527-531 ◽  
Author(s):  
C-H Chang ◽  
D Cella ◽  
O Fernández ◽  
G Luque ◽  
P de Castro ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Well Being ◽  
Cross Sectional Study ◽  
Self Report ◽  
Regression Analyses ◽  
Cross Sectional ◽  
Scale Scores ◽  
Multiple Sclerosis Patients

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.

scholarly journals Adherence to Therapy, Physical and Mental Quality of Life in Patients with Multiple Sclerosis

2021 ◽  
Vol 11 (7) ◽  
pp. 672
Author(s):  
Alessandra Buja ◽  
Guendalina Graffigna ◽  
Simona F. Mafrici ◽  
Tatjana Baldovin ◽  
Carlo Pinato ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Behavioral Interventions ◽  
Positive Association ◽  
Cross Sectional Study ◽  
Health Index ◽  
Online Questionnaire ◽  
Cross Sectional ◽  
Adherence To Therapy

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.

scholarly journals Quality of life in multiple sclerosis: The differential impact of motor and cognitive fatigue

2021 ◽  
Vol 7 (1) ◽  
pp. 205521732199604
Author(s):  
Sabina David Ruban ◽  
Claudia Christina Hilt ◽  
Thor Petersen
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Short Form ◽  
Cross Sectional Study ◽  
University Hospital ◽  
Cognitive Fatigue ◽  
Cross Sectional ◽  
Impact Scale ◽  
Assessment And Treatment

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.

Quality of Life in Chilean Transgender Children and Adolescents

2021 ◽  
Author(s):  
Carolina Mendoza ◽  
Helena Poggi ◽  
Mónica Flores ◽  
Cristóbal Morales ◽  
Alejandro Martínez-Aguayo
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
School Environment ◽  
Social Acceptance ◽  
Well Being ◽  
Psychosocial Health ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Psychological Well Being

Introduction: Transgender (TG) children and adolescents experience problems in school as well as with family and social relationships that can adversely affect their physical and psychosocial health and impair their quality of life (QOL). This study aims to assess health-related quality of life (HRQOL) in TG children. Methods: We performed a cross-sectional study comparing HRQoL in gender nonconforming (Trans) and gender conforming (CIS) children and adolescents using the Spanish version of KIDSCREEN-52 in 120 Chilean Trans and CIS children (aged 8–18 years) and their parents. All scores were standardized according to the KIDSCREEN manual. Results: Among the 100 questionnaires answered, 38 corresponded to children and adolescents aged 8.4–18 years. Twenty-one of them were TG (71% trans males) and 17 were CIS (76% females). Sixty-two parents answered the questionnaires: 33 from families of TG children (PTrans) and 29 from families of CIS children (PCis). Trans children had lower HRQOL scores in all domains compared to CIS children. The lowest-scoring domains for TG children were “Moods and Emotions”, “Psychological Well-Being” and “Social Acceptance”, and the highest-scoring domain was “School Environment”. The PTrans group had significantly higher scores than the Trans group for 3 of the 10 domains: “Psychological Well-Being”, “Moods and Emotions”, and “Parent Relations and Home Life”. Conclusion: Our results revealed that TG children and adolescents have lower QOL than their CIS counterparts, especially regarding items related to mental health. Furthermore, their parents may underestimate their well-being, confirming the vulnerability of the TG population. This finding underlies the need to perform early assessments of QOL for early detection and intervention in aspects that could deteriorate their quality of life.

scholarly journals Caregiver strain and quality of life 6 - 36 Months post stroke

2013 ◽  
Vol 69 (4) ◽  
Author(s):  
J. Hilton ◽  
W. Mudzi ◽  
V. Ntsiea ◽  
S. Olorunju
Keyword(s):  
Quality Of Life ◽  
High Strain ◽  
Well Being ◽  
Cross Sectional Study ◽  
Caregiver Strain ◽  
Sectional Study ◽  
Demographic Information ◽  
Cross Sectional ◽  
Post Stroke

Background: Caregivers of patients with stroke are central in providing for the patient’s needs post stroke. The well-being and quality of life of the caregiver is important in the rehabilitation of the patient with stroke. This study sought to establish the: functional level of patients, level of strain and quality of life of the caregiver, and the factors that influence caregivers’ quality of life six to 36 months post stroke. Methods: This was a cross-sectional study which included 35 patients six to 36 months post stroke and their primary caregiver utilising a sample of convenience from local clinics/hospitals in Johannesburg. Demographic information was obtained from the patient and the caregiver using a questionnaire. The Barthel Index (BI), Caregiver Strain Index (CSI) and the EQ-5D were also administered. Results: On the BI, 60% of the patients were moderately dependent to independent while 77% of the caregivers were strained. Older caregivers were 81% more likely to experience a decrease in quality of life than younger caregivers. Conclusion: A large proportion of patients are discharged from hospital without receving rehabilitation and are still dependent on caregivers six to 36 months post stroke. Caregivers of patients with stroke need more support from health professionals to mitigate against the high strain and low quality of life that they experience when caring for patients six to 36 months post stroke.

scholarly journals The COVID-19 pandemic and first-year medical students’ academic motivation

2021 ◽  
Author(s):  
Aidos K. Bolatov
Keyword(s):  
Quality Of Life ◽  
Medical Students ◽  
Extrinsic Motivation ◽  
Academic Motivation ◽  
Well Being ◽  
Cross Sectional Study ◽  
First Year ◽  
Cross Sectional ◽  
First Year Medical Students

Abstract The study aimed to investigate the relationships between academic motivation and the psychological well-being of 1st-year medical students during the COVID-19 pandemic. The total number of respondents in the cross-sectional study was 273. Intrinsic motivation was positively correlated with fear of COVID-19 and negatively correlated with psychological collapse and negative changes in quality of life due to the COVID-19. Extrinsic motivation positively associated with fear of COVID-19. Amotivation positively correlated with psychological collapse and negative changes in quality of life. In conclusion, COVID-19-related changes in quality of life and psychological destruction were predictors of academic motivation among 1st-year medical students.

scholarly journals Quality of life evaluation of coinfected patients with HIV/tuberculosis in a hospital in northeast Brazil

2020 ◽  
Vol 11 (2) ◽  
pp. 0346
Author(s):  
Amanda D. SILVA ◽  
Thaylany C. AMORIM ◽  
Ádeny M. ARAGÃO ◽  
Maria J. IBAÑEZ ◽  
José A. FILHO ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Relationships ◽  
Well Being ◽  
Cross Sectional Study ◽  
Socioeconomic Conditions ◽  
Cross Sectional ◽  
Life Evaluation ◽  
General Quality ◽  
And Performance

Objectives: To evaluate the quality of life of patients coinfected with HIV/tuberculosis and to understand their perception of their health. Methods: A cross-sectional study was carried out in a hospital in the state of Pernambuco, Brazil. Data were collected between November 2017 and April 2018 through interviews. The WHOQOL-HIV Bref instrument was used, obtaining the total score and performance in the domains: physical, psychological, level of independence, social relationships, environment, spirituality. Sociodemographic and clinical data from the Logistic Control System of Medicines (SICLOM®) were also collected through a questionnaire. Results: Twenty-six patients were interviewed, 76.9% were male, mostly heterosexual, single, 43.1% presented an advanced state of immune system compromise. 73.1% considered their health "good" or "very good" and 69.2% did not consider themselves sick. The general quality of life, score from zero (worst quality of life) to one hundred (best quality of life) obtained an average of 69.6 ± 9.1. In the domains, the worst average was obtained at the independence level (11.1 ± 2.6) and the highest scores were in the spirituality (15.5 ± 3.8) and psychological (15.3 ± 2.2) domains. Conclusions: The low level of independence and the unfavorable socioeconomic conditions were important aspects influencing in the quality of life of the studied population. Knowledge about the most affected domains in the quality of life allows the elaboration of clinical guidelines and public assistance policies that contribute to the well-being of these patients.

scholarly journals Quality of Life in Women with Deep Endometriosis: A Cross-Sectional Study

2020 ◽  
Vol 42 (02) ◽  
pp. 090-095 ◽  
Author(s):  
Daniela Angerame Yela ◽  
Iuri de Paula Quagliato ◽  
Cristina Laguna Benetti-Pinto
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Cross Sectional Study ◽  
Deep Infiltrating Endometriosis ◽  
Sectional Study ◽  
Deep Endometriosis ◽  
Cross Sectional ◽  
Sf 36 ◽  
Emotional Aspects

Abstract Objective To describe clinical and sociodemographic characteristics of women with deep infiltrating endometriosis (DIE) and assess their quality of life (QOL) during 6 months of medical treatment. Methods A descriptive cross-sectional study of 60 women diagnosed with DIE either by surgery or image methods (ultrasound or magnetic resonance), who received clinical treatment for at least 6 months in the Universidade de Campinas, Campinas, state of São Paulo, Brazil. Both the SF-36 and the EHP-30 questionnaires were used to assess the quality of life. Results The mean age of the patients was 37.7 ± 6.0 years old, with 50% presenting dysmenorrhea; 57% dyspareunia; and 50% chronic pelvic pain. The SF-36 and the EHP-30 revealed impaired quality of life. In the SF-36, the worst domains were limitation due to emotional aspects (40.2 ± 43.1) and self-esteem and disposition (46.1 ± 24.8), whereas in the EHP-30 they were social well-being (50.3 ± 30.6); infertility (48.0 ± 36.3); and sexual intercourse (54.0 ± 32.1). Conclusion Although clinically treated, women with deep endometriosis present impairment in different domains of quality of life regardless of the questionnaire used for evaluation.

scholarly journals Study of inter-relationship of depression, seizure frequency and quality of life of people with epilepsy in India

2014 ◽  
Vol 6 (1) ◽  
pp. 1-4
Author(s):  
Shubham Mehta ◽  
Alok Tyagi ◽  
Richa Tripathi ◽  
Mahesh Kumar
Keyword(s):  
Quality Of Life ◽  
Seizure Frequency ◽  
Well Being ◽  
Significant Negative Correlation ◽  
Cross Sectional Study ◽  
Psychological Consequences ◽  
Clinical Predictors ◽  
Cross Sectional ◽  
Assess Quality

Epilepsy is a chronic neurological disorder that can have profound physical, social and psychological consequences. We aimed to assess the clinical predictors of quality of life of people with epilepsy. We recruited 31 patients suffering from epilepsy in this cross-sectional study. Their clinical profile was recorded. Quality Of Life in Epilepsy (QOLIE-31) was used to assess quality of life of our patients. Depression was screened by Neurological Disorders Depression Inventory in Epilepsy (NDDI-E). Among all the clinical variables, only seizure frequency significantly correlated with seizure worry (P=0.002), emotional well-being (P=0.026) and social functions (P=0.013) subscales of QOLIE-31. NDDIE score showed a significant negative correlation with all the subscales of QOLIE-31 except medication effects (P=0.993). A significant positive correlation was also noted between seizure frequency and NDDI-E score (r=0.417, P=0.020). Seizure frequency and depression are the most important predictors of quality of life in epilepsy patients. The management of patients with epilepsy should not only be aimed at just preventing seizures but the treating clinicians should also be cognizant about depression which itself can significantly affect the quality of life of patients.

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