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1.
Reprod Health ; 21(1): 59, 2024 May 01.
Article in English | MEDLINE | ID: mdl-38693529

ABSTRACT

BACKGROUND: The maternal role is one of the most challenging yet rewarding roles that women experience in their lives. It begins when a woman becomes pregnant, and as the pregnancy progresses, she prepares to fulfill her role as a mother. A woman's health plays a crucial role in her ability to fulfill the maternal role. Multiple sclerosis (MS), as an autoimmune disease, presents unique challenges in achieving this role. Failing to fulfill the maternal role can have lasting consequences for both the mother and the baby. Given the increasing number of women with MS of reproductive age in Iran and the absence of specific programs for this group during pregnancy and postpartum, researchers have decided to develop a supportive program by exploring the meaning of the maternal role and identifying the needs of these women during this period. METHODS/MATERIALS: This study will be conducted in 3 stages. The first stage involves a qualitative study to explore the meaning of the "maternal role" in women with MS through a descriptive and interpretive phenomenological approach based on Van Manen's method. Data will be collected through semi-structured interviews with pregnant women with MS and mothers with MS who have children under one-year-old, recruited from the Multiple Sclerosis Society of Mashhad, Iran. The second stage will involve designing a support program based on the findings of the phenomenological study, literature review, and exploratory interviews. A logical model will guide the development of the program, and validation will be conducted using the nominal group technique. DISCUSSION: This study is the first of its kind in Iran to explore the meaning of the maternal role and develop a support program for women with MS. It is hoped that the results of this study will help address the challenges of motherhood faced by these women.


The maternal role is considered one of the most significant roles a woman will undertake in her lifetime. It is a process in which a woman, as a mother, attains competency in her role and eventually becomes comfortable with her identity as a mother. However, there are various factors, such as diseases, that can impede a mother from fully embracing her role. Multiple sclerosis (MS), an autoimmune disease that predominantly affects women of reproductive age, is one such condition.Given the lack of research in Iran regarding the experiences of women with MS in their maternal role, a study was developed in three phases. The first phase involves interviewing pregnant women with MS and mothers with MS who have children under one-year-old to explore the meaning of the maternal role. In the second phase, utilizing the findings from the initial interviews and the experts' opinions, a support program will be created to assist women with MS during pregnancy and after giving birth, and in the last stage, this program will be evaluated by nominal group technique.


Subject(s)
Multiple Sclerosis , Humans , Female , Multiple Sclerosis/psychology , Pregnancy , Iran , Qualitative Research , Adult , Mothers/psychology , Pregnancy Complications/psychology , Social Support
2.
Clin Psychol Psychother ; 31(3): e2992, 2024.
Article in English | MEDLINE | ID: mdl-38706169

ABSTRACT

BACKGROUND: Multiple sclerosis (MS)-linked stress is frequent, multidetermined and facilitates the onset/exacerbation of MS. However, few explanatory models of stress analysed the joint explanatory effect of emotion regulation and clinical outcomes of MS in those patients. OBJECTIVE: This study explored whether self-reported MS-related conditions (number of relapses, fatigue and global disability) and specific emotion regulation processes (experiential avoidance and self-compassion) explain stress symptoms in MS patients. METHODS: The MS sample comprised 101 patients with MS diagnosis receiving treatment in hospitals and recruited through the Portuguese MS Society. The no-MS sample included 134 age-, sex- and years of education-matched adults without MS recruited from the general Portuguese population. Both samples did not report other neurological disorders. Data were collected using self-response measures. RESULTS: All potential explanatory variables differed significantly between samples, with higher scores found in MS patients. In MS clinical sample, those variables and years of education correlated with stress symptoms and predicted stress symptoms in simple linear regression models. These results allowed their selection as covariates in a multiple linear regression model. Years of education, the number of relapses, fatigue and experiential avoidance significantly predicted 51% of stress symptoms' total variance. CONCLUSIONS: This study provides preliminary evidence on the importance of clinicians and researchers considering the simultaneous contribution of years of education, the number of perceived relapses, fatigue and experiential avoidance as factors that can increase vulnerability to stress in MS patients. Psychological intervention programmes that tackle these factors and associated stress symptomatology should be implemented.


Subject(s)
Emotional Regulation , Multiple Sclerosis , Self Report , Stress, Psychological , Humans , Female , Male , Multiple Sclerosis/psychology , Multiple Sclerosis/complications , Adult , Middle Aged , Stress, Psychological/psychology , Stress, Psychological/complications , Portugal , Fatigue/psychology
3.
BMC Public Health ; 24(1): 1389, 2024 May 23.
Article in English | MEDLINE | ID: mdl-38783221

ABSTRACT

BACKGROUND: The COVID-19 pandemic led to vast changes in working life and conditions in which we work. These changes may affect people with multiple sclerosis (PwMS) differently. We aimed to describe the working situation of PwMS during the COVID-19 pandemic and the pandemic's impact on their working lives. METHODS: All individuals aged 20-50 listed in the Swedish Multiple Sclerosis Registry were invited to participate in an online survey in 2021. Closed and open-ended responses linked to individual-level register data were used in this exploratory mixed-methods study. Differences in the proportions reporting specific impacts were assessed with chi-square tests by sex, MS severity, education, and profession. The open-ended answers were analysed through content analysis. RESULTS: Over 8500 PwMS were invited (52% response rate). We included the 3887 respondents who answered questions about the impact of the pandemic on working life. Most (93.7%) reported being in paid work. An impact of the ongoing pandemic to one's daily occupation was reported by 26.2%, with different characteristics observed across the impacts. Four categories of type of answers were identified from the open-ended answers: Direct impact on one's occupation, Disclosing or concealing MS in the workplace, Worry and uncertainty, and Broader impact to life situation. CONCLUSIONS: PwMS navigated the pandemic by interrupting as well as continuing their working lives. Many PwMS reported that the pandemic did not affect their work situation. However, the reported impacts differed among the participants and a sense of uncertainty and worry was often underlying their statements. Lessons from the pandemic may support future work participation.


Subject(s)
COVID-19 , Multiple Sclerosis , Humans , COVID-19/epidemiology , COVID-19/psychology , Sweden/epidemiology , Male , Female , Multiple Sclerosis/psychology , Multiple Sclerosis/epidemiology , Adult , Middle Aged , Young Adult , Surveys and Questionnaires , Employment/statistics & numerical data , Employment/psychology , Registries , Pandemics , Workplace/psychology
5.
Sci Rep ; 14(1): 12248, 2024 05 28.
Article in English | MEDLINE | ID: mdl-38806524

ABSTRACT

The recent SARS-CoV-2 pandemic and the vaccination campaign posed a challenge to patients with autoimmune disease, such as multiple sclerosis (MS). We aimed for investigating whether psychological/sociodemographic/clinical characteristics of MS patients are associated with SARS-CoV-2 vaccination status and self-reported vaccination side effects (SEs). We have asked patients with MS about their willingness to receive recommended standard vaccinations pre-pandemically since June 2019. Between 10/2021 and 01/2022, we surveyed 193 of these MS patients about their current SARS-CoV-2 vaccination status, their perception of vaccination-related SEs, and reasons for and against SARS-CoV-2 vaccination. 75.6% of the patients declared their willingness to receive standard vaccinations before the pandemic. 84.5%, 78.2%, and 13.0% of the patients had received the first, second, and third SARS-CoV-2 vaccination, respectively, until the follow-up survey. The most common reason for not getting vaccinated against SARS-CoV-2 was concern about possible side effects (82.1%), followed by the belief that the vaccines had not been adequately tested (64.3%). Vaccination-related SEs were reported by 52.8% of the patients. Younger age, higher education, lower degree of disability, relapsing disease course, shorter disease duration, not receiving a disease-modifying therapy and higher anxiety and depression levels were associated with the occurrence of certain vaccination-related SEs. Concerns about novel vaccines are widespread among MS patients and necessitate targeted education of the patients, especially to those with more severe psychopathological symptoms (anxiety or depression) and those who are generally skeptical of vaccination.


Subject(s)
COVID-19 Vaccines , COVID-19 , Multiple Sclerosis , SARS-CoV-2 , Self Report , Vaccination , Humans , Male , Female , Multiple Sclerosis/psychology , COVID-19 Vaccines/adverse effects , COVID-19 Vaccines/administration & dosage , COVID-19/prevention & control , COVID-19/psychology , COVID-19/epidemiology , Middle Aged , Adult , Vaccination/psychology , Vaccination/adverse effects , SARS-CoV-2/immunology , Surveys and Questionnaires , Anxiety
6.
J Neuroeng Rehabil ; 21(1): 88, 2024 May 28.
Article in English | MEDLINE | ID: mdl-38807215

ABSTRACT

BACKGROUND: Multiple sclerosis is a progressive neurological disease that affects the central nervous system, resulting in various symptoms. Among these, impaired mobility and fatigue stand out as the most prevalent. The progressive worsening of symptoms adversely alters quality of life, social interactions and participation in activities of daily living. The main objective of this study is to bring new insights into the impact of a multidisciplinary inpatient rehabilitation on supervised walking tests, physical activity (PA) behavior and everyday gait patterns. METHODS: A total of 52 patients, diagnosed with multiple sclerosis, were evaluated before and after 3 weeks of inpatient rehabilitation. Each measurement period consisted of clinical assessments and 7 days home monitoring using foot-mounted sensors. In addition, we considered two subgroups based on the Expanded Disability Status Scale (EDSS) scores: 'mild' (EDSS < 5) and 'severe' (EDSS ≥ 5) disability levels. RESULTS: Significant improvements in fatigue, quality of life and perceived mobility were reported. In addition, walking capacity, as assessed by the 10-m walking test, two-minute walk test and timed-up-and-go test, improved significantly after rehabilitation. Regarding the home assessment, mildly disabled patients significantly increased their locomotion per day and complexity of daily PA pattern after rehabilitation, while severely disabled patients did not significantly change. There were distinct and significant differences in gait metrics (i.e., gait speed, stride length, cadence) between mildly and severely disabled patients, but the statistical models did not show a significant overall rehabilitation effect on these gait metrics. CONCLUSION: Inpatient rehabilitation showed beneficial effects on self-reported mobility, self-rated health questionnaires, and walking capacity in both mildly and severely disabled patients. However, these improvements do not necessarily translate to home performance in severely disabled patients, or only marginally in mildly disabled patients. Motivational and behavioral factors should also be considered and incorporated into treatment strategies.


Subject(s)
Activities of Daily Living , Exercise , Multiple Sclerosis , Humans , Multiple Sclerosis/rehabilitation , Multiple Sclerosis/complications , Multiple Sclerosis/physiopathology , Multiple Sclerosis/psychology , Male , Female , Middle Aged , Adult , Exercise/physiology , Inpatients , Quality of Life , Gait/physiology , Fatigue/rehabilitation , Fatigue/etiology , Fatigue/physiopathology
7.
BMC Public Health ; 24(1): 1354, 2024 May 20.
Article in English | MEDLINE | ID: mdl-38769476

ABSTRACT

BACKGROUND: Patients with multiple sclerosis (MS) experience extensive problems due to fatigue and illness perception. Reducing these problems may improve these patients' quality of life (QoL). Accordingly, the current study is aimed at investigating the mediating role of self-efficacy, locus of control, coping strategy, and outcome expectancy in the relationship between illness perception and fatigue severity in patients with MS. METHODS: In a cross-sectional analytical study, data of 172 MS patients were collected by self-report questionnaires including illness perception questionnaires (IPQ-R), Multiple Sclerosis Self-Efficacy (MSSES) scale, health locus of control (MHLC), coping strategies in MS(CMSS), outcome expectancy, level of physical activity (IPAQ-SF), patient activation measure (PAM-13) and fatigue severity scale (FSS). The data were analyzed using linear and multiple regression analysis in SPSS software version 24 (SPSS Inc., Chicago, IL, USA). RESULTS: The final model explained 62% of the fatigue variance. Illness perception both directly and indirectly (through self-efficacy, physical activity level, internal health locus of control, patient activation, and negative coping strategies) could predict the participants' fatigue severity. Among the mediating variables, internal health locus of control, self-efficacy, and negative coping strategies had the greatest impact, respectively. moreover, outcome expectancy variable did not a mediating role in the aforementioned relationship. CONCLUSIONS: To enhance the well-being of MS patients and to improve the efficiency of treating MS related fatigue, a comprehensive treatment protocol is needed, encompassing psychological factors affecting fatigue severity.


Subject(s)
Adaptation, Psychological , Fatigue , Internal-External Control , Multiple Sclerosis , Self Efficacy , Humans , Cross-Sectional Studies , Male , Female , Multiple Sclerosis/psychology , Fatigue/psychology , Adult , Middle Aged , Surveys and Questionnaires , Severity of Illness Index , Quality of Life/psychology , Young Adult , Coping Skills
8.
Rev Neurol ; 78(11): 317-322, 2024 Jun 01.
Article in Spanish | MEDLINE | ID: mdl-38813789

ABSTRACT

INTRODUCTION: Depression is one of the most prevalent psychiatric conditions in adulthood, reaching figures of around 20%. The methodologies used to study depression are varied, and range from a self-administered test to structured psychiatric assessment. Several studies of patients with multiple sclerosis (MS) have been conducted in the last 20 years, and figures of around 35% have been found for depressive symptoms, while depressive disorders are less frequent, at approximately 21%. AIMS: The aim of this study is to evaluate the usefulness of patient self-reported scales such as the Beck depression inventory (BDI) for identifying depressive symptoms in patients with MS, and to analyse their correlation with the diagnosis of clinical depression or depressive disorder using the psychiatric clinical interview based on the criteria of the Diagnostic and statistical manual of mental disorders, fifth edition. PATIENTS AND METHODS: This is a multicentre descriptive cross-sectional study of patients with MS and depressive symptoms. The BDI and the Hamilton depression rating scale (HDRS) were used, and the patients with the highest scores underwent psychiatric assessment. RESULTS: A total of 191 patients were included; 81 of these (40.5%) had depressive symptomatology in the pathological range according to the BDI (cut-off point of 14), and 20 had a severe score (above 28). Nineteen patients with severe depressive symptoms according to both scales were selected and finally evaluated by a psychiatrist, who also assessed five patients who according to the neurologist had severe depressive symptoms despite a BDI score of almost 28, but did not reach that level. The suspected major depressive disorder was confirmed in only four (21%) cases with BDI scores indicative of severe symptoms. There is no correlation between the severity score as evidenced by the BDI and the psychiatric assessment. A major depressive disorder was diagnosed in 16 (66.6%) of the 24 patients with BDI > 26 evaluated by psychiatry. A score above 26 on the BDI enables identification of 75% of cases of depressive disorder without subtyping. The correlation between the HDRS and the BDI was statistically significant (r = 0.8; p < 0). CONCLUSIONS: The BDI is a useful screening test for identifying patients with depressive symptoms; in specific terms, a score above 26 is probably indicative of a depressive disorder that may benefit from psychiatric assessment.


TITLE: Utilidad de la escala de depresión de Beck para el diagnóstico de los trastornos depresivos en la esclerosis múltiple.Introducción. La depresión es una de las condiciones psiquiátricas con mayor prevalencia en la edad adulta y alcanza cifras alrededor del 20%. Las metodologías para el estudio de la depresión son varias y van del uso de un test autoadministrado a la valoración psiquiátrica estructurada. En los últimos 20 años se han realizado varios estudios en los pacientes con esclerosis múltiple (EM), y se han objetivado cifras alrededor del 35% para los síntomas depresivos, mientras que los trastornos depresivos son menos frecuentes, aproximadamente el 21%. Objetivos. El objetivo de este estudio es evaluar la utilidad de una escala autoinformada por el paciente, como la escala de depresión de Beck (BDI), para la detección de síntomas depresivos en pacientes con EM, y analizar su correlación con el diagnóstico de depresión clínica o trastorno depresivo realizado a través de la entrevista clínica psiquiátrica basada en los criterios del Manual diagnóstico y estadístico de los trastornos mentales, quinta edición. Pacientes y métodos. Es un estudio descriptivo transversal multicéntrico de pacientes con EM y síntomas depresivos. Se emplearon la BDI y la escala de valoración de la depresión de Hamilton (HDRS), y los pacientes con puntuaciones más altas se sometieron a una valoración psiquiátrica. Resultados. Se incluyó a 191 pacientes; de ellos, 81 (40,5%) presentaron sintomatología depresiva en el rango patológico de acuerdo con la BDI (punto de corte en 14), y 20, puntuación grave (superior a 28). Se ha seleccionado a 19 pacientes con síntomas depresivos graves según ambas escalas que finalmente han sido evaluados por un psiquiatra, que además ha valorado a cinco pacientes que según el neurólogo presentaban síntomas depresivos graves a pesar de una puntuación en la BDI cercana, pero inferior, a 28. Sólo en cuatro (21%) casos con puntuación indicativa de síntomas graves en la BDI se ha confirmado la sospecha de trastorno depresivo mayor grave. No hay correlación entre la puntuación de gravedad evidenciada por la BDI y la valoración psiquiátrica. Se ha formulado el diagnóstico de trastorno depresivo mayor en 16 (66,6%) de los 24 pacientes con BDI menor que 26 evaluados por psiquiatría. Una puntuación superior a 26 en la BDI permite identificar el 75% de los casos de trastorno depresivo sin subtipificar. La correlación entre la HDRS y la BDI fue estadísticamente significativa (r = 0,8; p menor que 0). Conclusiones. La BDI es un test de cribado útil para identificar a pacientes con síntomas depresivos; en particular, una puntuación superior a 26 es indicativa con buena probabilidad de un trastorno depresivo que se podría beneficiar de una valoración psiquiátrica.


Subject(s)
Depressive Disorder , Multiple Sclerosis , Psychiatric Status Rating Scales , Humans , Female , Male , Multiple Sclerosis/psychology , Multiple Sclerosis/complications , Multiple Sclerosis/diagnosis , Cross-Sectional Studies , Adult , Middle Aged , Depressive Disorder/diagnosis , Depressive Disorder/etiology
9.
Sci Rep ; 14(1): 9806, 2024 04 29.
Article in English | MEDLINE | ID: mdl-38684843

ABSTRACT

Post-COVID condition (PCC) and multiple sclerosis (MS) share some clinical and demographic features, including cognitive symptoms and fatigue. Some pathophysiological mechanisms well-known in MS, such as autoimmunity, neuroinflammation and myelin damage, have also been implicated in PCC. In this study, we aimed to compare the cognitive phenotypes of two large cohorts of patients with PCC and MS, and to evaluate the relationship between fatigue and cognitive performance. Cross-sectional study including 218 patients with PCC and 218 with MS matched by age, sex, and years of education. Patients were evaluated with a comprehensive neuropsychological protocol and were categorized according to the International Classification of Cognitive Disorders system. Fatigue and depression were also assessed. Cognitive profiles of PCC and MS largely overlapped, with a greater impairment in episodic memory in MS, but with small effect sizes. The most salient deficits in both disorders were in attention and processing speed. The severity of fatigue was greater in patients with PCC. Still, the correlations between fatigue severity and neuropsychological tests were more prominent in the case of MS. There were no differences in the severity of depression among groups. Our study found similar cognitive profiles in PCC and MS. Fatigue was more severe in PCC, but was more associated with cognitive performance in MS. Further comparative studies addressing the mechanisms related to cognitive dysfunction and fatigue may be of interest to advance the knowledge of these disorders and develop new therapies.


Subject(s)
COVID-19 , Cognition , Cognitive Dysfunction , Fatigue , Multiple Sclerosis , Neuropsychological Tests , Humans , Multiple Sclerosis/complications , Multiple Sclerosis/psychology , Male , Female , Middle Aged , Adult , Cross-Sectional Studies , COVID-19/complications , COVID-19/psychology , COVID-19/virology , Depression , Post-Acute COVID-19 Syndrome , SARS-CoV-2/isolation & purification
10.
Mult Scler Relat Disord ; 86: 105603, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38583368

ABSTRACT

BACKGROUND: Multiple sclerosis (MS) negatively impacts cognition and has been associated with deficits in social cognition, including emotion recognition. There is a lack of research examining emotion recognition from multiple modalities in MS. The present study aimed to employ a clinically available measure to assess multimodal emotion recognition abilities among individuals with MS. METHOD: Thirty-one people with MS and 21 control participants completed the Advanced Clinical Solutions Social Perceptions Subtest (ACS-SP), BICAMS, and measures of premorbid functioning, mood, and fatigue. ANCOVAs examined group differences in all outcomes while controlling for education. Correlational analyses examined potential correlates of emotion recognition in both groups. RESULTS: The MS group performed significantly worse on the ACS-SP than the control group, F(1, 49) = 5.32, p = .025. Significant relationships between emotion recognition and cognitive functions were found only in the MS group, namely for information processing speed (r = 0.59, p < .001), verbal learning (r = 0.52, p = .003) and memory (r = 0.65, p < 0.001), and visuospatial learning (r = 0.62, p < 0.001) and memory (r = 0.52, p = .003). Emotion recognition did not correlate with premorbid functioning, mood, or fatigue in either group. CONCLUSIONS: This study was the first to employ the ACS-SP to assess emotion recognition in MS. The results suggest that emotion recognition is impacted in MS and is related to other cognitive processes, such as information processing speed. The results provide information for clinicians amidst calls to include social cognition measures in standard MS assessments.


Subject(s)
Emotions , Multiple Sclerosis , Recognition, Psychology , Social Perception , Humans , Female , Male , Emotions/physiology , Adult , Middle Aged , Multiple Sclerosis/complications , Multiple Sclerosis/psychology , Recognition, Psychology/physiology , Neuropsychological Tests , Cognitive Dysfunction/etiology , Cognitive Dysfunction/diagnosis , Cognitive Dysfunction/physiopathology
11.
Mult Scler Relat Disord ; 86: 105635, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38640585

ABSTRACT

OBJECTIVE: This study assessed the Health-Related Quality of Life (HRQoL) and utilities of Multiple Sclerosis (MS) patients in Lebanon using generic and MS-specific QoL instruments, categorized by disease severity, and explored factors associated with HRQoL. METHODS: This was a cross-sectional, retrospective HRQoL study collecting data through face-to-face interviews using the EQ-5D-5 L and the Multiple Sclerosis International Quality of Life (MusiQoL) questionnaires. We enrolled Lebanese patients aged ≥18 years, diagnosed with MS for >6 months. Patients were categorized by disease severity using the expanded disability status scale (EDSS) scores: 0-3 (mild MS), 4-6.5 (moderate MS), and 7-9 (severe MS). Bivariate and linear regression analyses were performed to study factors associated with HRQoL. RESULTS: A total of 210 patients (mean age: 43.3 years; 65.7 % females) were included. The mean EQ-5D-5 L utility score was 0.74. This score decreased significantly with disease severity (p < 0.001 for the trend): 0.93, 0.60, and 0.32 for mild, moderate, and severe MS, respectively. The mean MusiQoL global index score was 71.33 and was significantly lower for severe MS (58.68), than for moderate (65.23) and mild (77.80), (p < 0.001 for the trend). Higher educational level, lower EDSS scores, and longer disease duration were associated significantly with a higher EQ-5D-5 L utility (R2 = 0.67), while employment, lower EDSS scores, and decrease in cognitive difficulties were associated with better MusiQoL utility (R2 = 0.46). CONCLUSIONS: This study reveals a significant and gradual deterioration in HRQoL as MS progresses, resulting in low utility scores for patients with severe MS.


Subject(s)
Multiple Sclerosis , Quality of Life , Severity of Illness Index , Humans , Female , Male , Adult , Lebanon , Cross-Sectional Studies , Multiple Sclerosis/psychology , Multiple Sclerosis/physiopathology , Middle Aged , Retrospective Studies , Surveys and Questionnaires
12.
Qual Life Res ; 33(6): 1675-1689, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38578380

ABSTRACT

PURPOSE: People living with multiple sclerosis (PwMS) in metropolitan Victoria, Australia, experienced a 112-day, COVID-19-related lockdown in mid-2020. Contemporaneously, Australian PwMS elsewhere experienced minimal restrictions, resulting in a natural experiment. This study investigated the relationships between lockdowns, COVID-19-related adversity, and health-related quality of life (HRQoL). It also generated health state utilities (HSU) representative of changes in HRQoL. METHODS: Data were extracted from Australian MS Longitudinal Study surveys, which included the Assessment of Quality of Life-Eight Dimensions (AQoL-8D) instrument and a COVID-19 questionnaire. This COVID-19 questionnaire required participants to rank their COVID-19-related adversity across seven health dimensions. Ordered probits were used to identify variables contributing to adversity. Linear and logit regressions were applied to determine the impact of adversity on HRQoL, defined using AQoL-8D HSUs. Qualitative data were examined thematically. RESULTS: N = 1666 PwMS (average age 58.5; 79.8% female; consistent with the clinical presentation of MS) entered the study, with n = 367 (22.0%) exposed to the 112-day lockdown. Lockdown exposure and disability severity were strongly associated with higher adversity rankings (p < 0.01). Higher adversity rankings were associated with lower HSUs. Participants reporting major adversity, across measured health dimensions, had a mean HSU 0.161 (p < 0.01) lower than participants reporting no adversity and were more likely (OR: 2.716, p < 0.01) to report a clinically significant HSU reduction. Themes in qualitative data supported quantitative findings. CONCLUSIONS: We found that COVID-19-related adversity reduced the HRQoL of PwMS. Our HSU estimates can be used in health economic models to evaluate lockdown cost-effectiveness for people with complex and chronic (mainly neurological) diseases.


Subject(s)
COVID-19 , Multiple Sclerosis , Quality of Life , SARS-CoV-2 , Humans , COVID-19/psychology , COVID-19/epidemiology , Multiple Sclerosis/psychology , Female , Male , Middle Aged , Longitudinal Studies , Surveys and Questionnaires , Aged , Australia , Victoria , Adult , Pandemics , Quarantine/psychology
14.
J Neurol ; 271(6): 3131-3141, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38625399

ABSTRACT

BACKGROUND: Increasingly, patients, clinicians, and regulators call for more evidence on the impact of innovative medicines on quality of life (QoL). We assessed the effects of disease-modifying therapies (DMTs) on QoL in people with multiple sclerosis (PwMS). METHODS: Randomized trials assessing approved DMTs in PwMS with results for at least one outcome referred to as "quality of life" were searched in PubMed and ClinicalTrials.gov. RESULTS: We identified 38 trials published between 1999 and 2023 with a median of 531 participants (interquartile range (IQR) 202 to 941; total 23,225). The evaluated DMTs were mostly interferon-beta (n = 10; 26%), fingolimod (n = 7; 18%), natalizumab (n = 5; 13%), and glatiramer acetate (n = 4; 11%). The 38 trials used 18 different QoL instruments, with up to 11 QoL subscale measures per trial (median 2; IQR 1-3). QoL was never the single primary outcome. We identified quantitative QoL results in 24 trials (63%), and narrative statements in 15 trials (39%). In 16 trials (42%), at least one of the multiple QoL results was statistically significant. The effect sizes of the significant quantitative QoL results were large (median Cohen's d 1.02; IQR 0.3-1.7; median Hedges' g 1.01; IQR 0.3-1.69) and ranged between d 0.14 and 2.91. CONCLUSIONS: Certain DMTs have the potential to positively impact QoL of PwMS, and the assessment and reporting of QoL is suboptimal with a multitude of diverse instruments being used. There is an urgent need that design and reporting of clinical trials reflect the critical importance of QoL for PwMS.


Subject(s)
Multiple Sclerosis , Quality of Life , Humans , Multiple Sclerosis/drug therapy , Multiple Sclerosis/psychology , Randomized Controlled Trials as Topic , Outcome Assessment, Health Care , Immunologic Factors/therapeutic use
17.
J Palliat Med ; 27(5): 622-629, 2024 May.
Article in English | MEDLINE | ID: mdl-38597932

ABSTRACT

Background: Long-term neurological conditions include multiple sclerosis, Parkinson's-related diseases, and motor neurone disease. National and international guidelines recommend a palliative approach for advancing neurological disease, but there is little research describing and comparing the palliative care needs of these patients side by side. Objective: The aim of this study was to describe and compare the symptom burden and psychological distress of patients with multiple sclerosis, Parkinson's-related diseases, and motor neurone disease. Design: A cross-sectional secondary analysis of the OPTCARE Neuro trial data was performed. Setting/Subjects: Recruitment was from seven sites across the United Kingdom. Patients aged 18 years or older, severely affected by advanced stages of multiple sclerosis or Parkinson's-related diseases or any stage of motor neurone disease, with an unresolved symptom, and one other issue despite usual care were eligible. Measurements: Baseline demographics, Integrated Palliative care Outcome Scale (IPOS) Neuro, and Hospital Anxiety and Depression Scale (HADS) results were analyzed. Results: Data from 348 participants were analyzed. The mean IPOS Neuro-S24 score was 27, with no statistical difference found between groups (p = 0.341). The most common symptoms were poor mobility (68.5%), problems using legs (63%), and fatigue (34.8%). The HADS revealed that a quarter of participants met the criteria for a diagnosis of anxiety and depression. Conclusions: Multiple sclerosis, Parkinson's-related disease, and motor neurone disease patients who were eligible for the OPTCARE Neuro trial have unmet needs in the form of distressing physical and psychological symptoms. It is unclear how to address these needs. The answer likely lies in a collaborative approach between neurology, palliative care, psychology, and specialized allied health professionals. Future work should focus on investigating this.


Subject(s)
Motor Neuron Disease , Multiple Sclerosis , Palliative Care , Parkinson Disease , Humans , Male , Female , Middle Aged , Multiple Sclerosis/psychology , Multiple Sclerosis/therapy , Cross-Sectional Studies , Motor Neuron Disease/psychology , Motor Neuron Disease/therapy , United Kingdom , Parkinson Disease/psychology , Parkinson Disease/therapy , Aged , Adult
18.
J Eval Clin Pract ; 30(4): 687-692, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38623997

ABSTRACT

AIM: Determining patients' perceptions of multiple sclerosis, a disease with varying symptoms and prognosis for each individual, can significantly contribute to directing care and treatment. Metaphors may be an opportunity to determine perceptions of this unique illness experience. The aim of this study was to reveal the perceptions of patients with multiple sclerosis about "multiple sclerosis" through metaphors. METHODS: This study was conducted with metaphor analysis technique based on phenomenological method. The sample included 184 patients with multiple sclerosis. Data was collected face-to-face between July 2022 and January 2023. Each participant was interviewed individually and was asked to fill in the blanks in the sentence, "multiple sclerosis is like… because…". Content analysis was performed for metaphors. RESULTS: The study revealed five main themes and twelve subthemes that provided insight into the participants' multiple sclerosis perceptions. The themes address (i) Manipulator multiple sclerosis; ambiguous multiple sclerosis, attritive multiple sclerosis, controller multiple sclerosis, demander multiple sclerosis, and conditional multiple sclerosis (ii) Temporal multiple sclerosis; cyclical multiple sclerosis and perpetual multiple sclerosis (iii) Follower multiple sclerosis; unaccepted multiple sclerosis, partner multiple sclerosis and ambusher multiple sclerosis (iv) Different multiple sclerosis; bittersweet multiple sclerosis and unique multiple sclerosis (v) Restorative multiple sclerosis. CONCLUSION: This study demonstrated that patients with multiple sclerosis mostly had negative perceptions regarding their relationship with multiple sclerosis. The results place a responsibility on healthcare professionals to improve how patients adapt to multiple sclerosis. This study's results can bridge theoretical knowledge and practice.


Subject(s)
Metaphor , Multiple Sclerosis , Multiple Sclerosis/psychology , Self-Assessment , Humans , Male , Female , Young Adult , Adult , Middle Aged
19.
Tijdschr Psychiatr ; 66(3): 165-167, 2024.
Article in Dutch | MEDLINE | ID: mdl-38650515

ABSTRACT

This clinical vignette describes a 29-year-old woman who had her first neurological manifestations of multiple sclerosis (MS) on the same day as a second lifetime manic episode as part of a bipolar I disorder. The patient was stable for eight years before this episode. An MRI-scan conducted during admission showed multiple demyelinating lesions in the frontal cortex, which might have influenced the development and course of the manic episode. Her manic symptoms went into remission during the same time as her neurological symptoms. This clinical vignette with literature review is an illustration of the interesting, yet still unknown relationship between MS and affective disorders, where one might be influenced by the other but also have a common pathophysiology. This highlights that the dividing line between neurology and psychiatry, whose pathophysiology often takes place in the same organ, is often arbitrary.


Subject(s)
Bipolar Disorder , Multiple Sclerosis , Humans , Female , Bipolar Disorder/diagnosis , Adult , Multiple Sclerosis/psychology , Magnetic Resonance Imaging
20.
Sci Rep ; 14(1): 7096, 2024 03 26.
Article in English | MEDLINE | ID: mdl-38528009

ABSTRACT

Socio-cognitive impairment is frequent in multiple sclerosis (MS). However, little is known about the relationship between other potentially relevant clinical symptoms (i.e., cognition, depression, fatigue) and the degree of socio-cognitive impairment, and neural mechanisms underlying socio-cognitive deficits in MS. Therefore, we meta-analytically quantified socio-cognitive impairment in MS. A systematic literature search in MEDLINE Ovid, Web of Science Core Collection, CENTRAL, and PsycInfo was conducted until December 2022. Studies investigating affective or cognitive theory of mind (a/cToM), visual perspective taking (VPT) and social decision making (SDM) in MS patients relative to healthy controls were included. Risk-of-bias (RoB) was assessed using the CLARITY group "Tool for Assessing RoB in Cohort Studies". Mediation analysis investigated the contribution of clinical symptoms to socio-cognitive impairment. In total, n = 8534 studies were screened, 58 were included in the systematic review, 27 in the meta-analyses. Most studies were rated with a moderate RoB. Meta-analyses confirmed impairment of both aToM and cToM in MS patients, with larger effect sizes for aToM. Mediation analysis demonstrated that higher levels of fatigue selectively predicted the degree of cToM impairment. There was insufficient data available to quantify impairment in other socio-cognitive domains. Fourteen structural and functional imaging studies were identified and characterized by substantial heterogeneity. Summarized, this study confirmed substantial socio-cognitive impairment in MS and highlights the potential exacerbating role of comorbid clinical symptoms. We identify several evidence gaps that need to be addressed in future large-scale studies using comprehensive and coordinated assessments of socio-cognitive parameters, potential mediators, and neural correlates.Trial registration: The pre-registered review protocol can be assessed at www.crd.york.ac.uk/PROSPERO/ (ID: CRD42020206225).


Subject(s)
Cognition Disorders , Cognitive Dysfunction , Multiple Sclerosis , Humans , Sclerosis , Cognitive Dysfunction/epidemiology , Cognition , Multiple Sclerosis/complications , Multiple Sclerosis/psychology
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