scholarly journals Patterns of Objective and Subjective Burden of Informal Caregivers in Multiple Sclerosis

2015 ◽  
Vol 2015 ◽  
pp. 1-10 ◽  
Author(s):  
E. Bayen ◽  
C. Papeix ◽  
P. Pradat-Diehl ◽  
C. Lubetzki ◽  
M. E. Joël
Keyword(s):  
Multiple Sclerosis ◽  
Informal Caregivers ◽  
Executive Dysfunction ◽  
Female Gender ◽  
Poor Mental Health ◽  
Subjective Burden ◽  
Disability Status ◽  
Poor Mental Health Status ◽  
Objective Burden ◽  
Zarit Burden Inventory

Background. Home care for patients with Multiple Sclerosis (MS) relies largely on informal caregivers (ICs).Methods. We assessed ICs objective burden (Resource Utilization in Dementia measuring informal care time (ICT)) and ICs subjective burden (Zarit Burden Inventory (ZBI)).Results. ICs (N=99) were spouses (70%), mean age 52 years, assisting disabled patients with a mean EDSS (Expanded Disability Status Scale) of 5.5, with executive dysfunction (mean DEX (Dysexecutive questionnaire) of 25) and a duration of MS ranging from 1 to 44 years. Objective burden was high (mean ICT = 6.5 hours/day), mostly consisting of supervision time. Subjective burden was moderate (mean ZBI = 27.3). Multivariate analyses showed that both burdens were positively correlated with higher levels of EDSS and DEX, whereas coresidency and IC’s female gender correlated with objective burden only and IC’s poor mental health status with subjective burden only. When considering MS aggressiveness, it appeared that both burdens were not correlated with a higher duration of MS but rather increased for patients with severe and early dysexecutive function and for patients classified as fast progressors according to the Multiple Sclerosis Severity Score.Conclusion. Evaluation of MS disability course and IC’s personal situation is crucial to understand the burden process and to implement adequate interventions in MS.

139 EVIDENCE OF OBJECTIVE BURDEN, SUBJECTIVE BURDEN, AND QUALITY OF LIFE IMPACTS ON INFORMAL CAREGIVERS OF FRAIL OLDER PERSONS WHO FALL

2010 ◽  
Vol 16 ◽  
pp. S40
Author(s):  
M. Faes ◽  
M.F. Reelick ◽  
B.W.M. Schalk ◽  
E. Ek ◽  
R.A. Esselink ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Older Persons ◽  
Informal Caregivers ◽  
Subjective Burden ◽  
Frail Older Persons ◽  
Objective Burden

Gender Differences in Family Burden Experienced by Caregivers to People with Intellectual Disability

2009 ◽  
Vol 24 (S1) ◽  
pp. 1-1
Author(s):  
P. Gutiérrez-Recacha ◽  
A. Martorell ◽  
A. Pereda
Keyword(s):  
Gender Differences ◽  
Intellectual Disability ◽  
Psychiatric Patients ◽  
Female Gender ◽  
Family Burden ◽  
Subjective Burden ◽  
Social Stereotypes ◽  
Everyday Activities ◽  
Sheltered Workshop ◽  
Objective Burden

Background:The term ‘family burden’ has been introduced to describe the adverse consequences of life with severely disturbed psychiatric patients. Its use has been extended to people with intellectual disability (ID). Literature has established a distinction between the intensity of worry and appraisals experienced by caregivers (subjective burden) and the real amount of resources (time, money, health, etc.) spent on the care (objective burden).Aims:To compare the possible effect of gender on the burden experienced by a group of caregivers to people with ID in Spain.Methodology:179 adults with intellectual disability clients of the Carmen Pardo-Valcarce Foundation's sheltered workshop in Madrid (Spain) were asked to participate in the present study along with their main caregivers. Burden experienced by caregivers was assessed with the ECFOS-II / SOFBI-II scale (Entrevista de Carga Familiar Objetiva y Subjetiva / Objective and Subjective Family Burden Interview). The tool has been validated for people with ID. It hasan introductory section plus 8 modules which assess different domains of burden.Results:Only two modules of the scale showed significant differences depending on the gender of the user. These modules refer to the need of assistance in everyday activities and motives for concern for the caregiver (p< 0.05).Discussion:In overall terms, caregivers experience the same level of burden when caring either for a son or for a daughter with ID. However, gender differences arise when considering specific domains, showing that social stereotypes can account for a higher level of subjective burden associated to female gender.

scholarly journals Burden of caregiving: Evidence of objective burden, subjective burden, and quality of life impacts on informal caregivers of patients with rheumatoid arthritis

2004 ◽  
Vol 51 (4) ◽  
pp. 570-577 ◽  
Author(s):  
Werner B. F. Brouwer ◽  
N. Job A. van Exel ◽  
Bernard van de Berg ◽  
Huib J. Dinant ◽  
Marc A. Koopmanschap ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Rheumatoid Arthritis ◽  
Informal Caregivers ◽  
Subjective Burden ◽  
Objective Burden

scholarly journals Relationship between Expanded Disability Status Scale scores and the presence of temporomandibular disorders in patients with multiple sclerosis

2018 ◽  
Vol 12 (01) ◽  
pp. 144-148 ◽  
Author(s):  
Lucas Senra Correa Carvalho ◽  
Osvaldo José Moreira Nascimento ◽  
Luciane Lacerda Franco Rocha Rodrigues ◽  
Andre Palma Da Cunha Matta
Keyword(s):  
Multiple Sclerosis ◽  
Temporomandibular Disorders ◽  
Control Group ◽  
Expanded Disability Status Scale ◽  
Exact Test ◽  
Disability Status ◽  
Relapsing Remitting ◽  
Scale Scores ◽  
Axis I ◽  
Relapsing Remitting Multiple Sclerosis

ABSTRACTObjectives: The objectives of this study were to assess the prevalence of temporomandibular disorders (TMDs) in patients with relapsing-remitting multiple sclerosis (MS) and to investigate whether an association exists between the presence of TMD symptoms and the degree of MS-related disability. Materials and Methods: In all, 120 individuals were evaluated: 60 patients with a diagnosis of relapsing-remitting MS and 60 age- and sex-matched controls without neurological impairments. A questionnaire recommended by the European Academy of Craniomandibular Disorders for the assessment of TMD symptoms was administered. For those who answered affirmatively to at least one of the questions, the RDC/TMD Axis I instrument was used for a possible classification of TMD subtypes. The Expanded Disability Status Scale (EDSS) was the measure of the degree of MS-related disability. Statistical Analysis Used: Fisher’s exact test was used to analyze the data. ANOVA was used to detect significant differences between means and to assess whether the factors influenced any of the dependent variables by comparing means from the different groups. Results: The prevalence of TMD symptoms in patients with MS was 61.7% versus 18.3% in the control group (CG). A diagnosis of TMD was established for 36.7% in the MS group and 3.3% in the CG (P = 0.0001). There were statistically significant differences between degrees of MS-related disability and the prevalence of TMD (P = 0.0288). Conclusions: The prevalence of both TMD and TMD symptoms was significantly greater in the MS group. EDSS scores and TMD prevalence rates were inversely related.

scholarly journals Determinants of therapeutic lag in multiple sclerosis

2021 ◽  
pp. 135245852098130
Author(s):  
Izanne Roos ◽  
Emmanuelle Leray ◽  
Federico Frascoli ◽  
Romain Casey ◽  
J William L Brown ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Expanded Disability Status Scale ◽  
Disability Progression ◽  
Delayed Onset ◽  
Disease Characteristics ◽  
Disability Status ◽  
Male Sex ◽  
Pre Treatment ◽  
Patient Subgroups

Background: A delayed onset of treatment effect, termed therapeutic lag, may influence the assessment of treatment response in some patient subgroups. Objectives: The objective of this study is to explore the associations of patient and disease characteristics with therapeutic lag on relapses and disability accumulation. Methods: Data from MSBase, a multinational multiple sclerosis (MS) registry, and OFSEP, the French MS registry, were used. Patients diagnosed with MS, minimum 1 year of exposure to MS treatment and 3 years of pre-treatment follow-up, were included in the analysis. Studied outcomes were incidence of relapses and disability accumulation. Therapeutic lag was calculated using an objective, validated method in subgroups stratified by patient and disease characteristics. Therapeutic lag under specific circumstances was then estimated in subgroups defined by combinations of clinical and demographic determinants. Results: High baseline disability scores, annualised relapse rate (ARR) ⩾ 1 and male sex were associated with longer therapeutic lag on disability progression in sufficiently populated groups: females with expanded disability status scale (EDSS) < 6 and ARR < 1 had mean lag of 26.6 weeks (95% CI = 18.2–34.9), males with EDSS < 6 and ARR < 1 31.0 weeks (95% CI = 25.3–36.8), females with EDSS < 6 and ARR ⩾ 1 44.8 weeks (95% CI = 24.5–65.1), and females with EDSS ⩾ 6 and ARR < 1 54.3 weeks (95% CI = 47.2–61.5). Conclusions: Pre-treatment EDSS and ARR are the most important determinants of therapeutic lag.

scholarly journals Psychosocial interventions to support the mental health of informal caregivers of persons living with dementia – a systematic literature review

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Henrik Wiegelmann ◽  
Sarah Speller ◽  
Lisa-Marie Verhaert ◽  
Liane Schirra-Weirich ◽  
Karin Wolf-Ostermann
Keyword(s):  
Mental Health ◽  
Informal Caregivers ◽  
Psychosocial Interventions ◽  
Health Interventions ◽  
Subjective Burden ◽  
Dementia Caregivers ◽  
Targeted Interventions ◽  
Positive Effects ◽  
Increased Risk ◽  
Mental Health Interventions

Abstract Background Informal caregivers of persons living with dementia have an increased risk of adverse mental health effects. It is therefore important to systematically summarize published literature in order to find out which mental health interventions generate effective support for informal caregivers of persons living with dementia. The objective of this study is to conduct a systematic review of intervention content, effectiveness and subgroup differentiation of mental health interventions for informal caregivers of persons with dementia living at home. Method We searched four electronic databases (PubMed, PsychINFO, Scopus and CINAHL) and included only methodically high-quality randomized controlled trials (RCTs), published in English or German language between 2009 and 2018. The intervention programmes focused on mental health of family caregivers. A narrative synthesis of the included studies is given. Results Forty-eight publications relating to 46 intervention programmes met the inclusion criteria. Burden, depression and quality of life (QoL) are the predominant parameters that were investigated. Twenty-five of forty-six interventions (54.3%) show positive effects on at least one of the outcomes examined. Most often, positive effects are reported for the outcome subjective burden (46.2%). Only six studies explicitly target on a certain subgroup of informal dementia caregivers (13%), whereas all other interventions (87%) target the group as a whole without differentiation. Conclusion The most beneficial results were found for cognitive behavioural approaches, especially concerning the reduction of depressive symptoms. Besides this, leisure and physical activity interventions show some good results in reducing subjective caregiver burden. In order to improve effectiveness, research and practice may focus on developing more targeted interventions for special dementia informal caregiver subgroups.

scholarly journals A Pilot Study of 24-h Motor Activity Patterns in Multiple Sclerosis: Pre-Planned Follow-Up at 2 Years

2021 ◽  
Vol 3 (3) ◽  
pp. 366-376
Author(s):  
Lorenzo Tonetti ◽  
Federico Camilli ◽  
Sara Giovagnoli ◽  
Vincenzo Natale ◽  
Alessandra Lugaresi
Keyword(s):  
Multiple Sclerosis ◽  
Motor Activity ◽  
Activity Pattern ◽  
Activity Patterns ◽  
Expanded Disability Status Scale ◽  
Disability Status ◽  
Relapsing Remitting ◽  
Edss Score ◽  
Activity Prognosis

Early multiple sclerosis (MS) predictive markers of disease activity/prognosis have been proposed but are not universally accepted. Aim of this pilot prospective study is to verify whether a peculiar hyperactivity, observed at baseline (T0) in early relapsing-remitting (RR) MS patients, could represent a further prognostic marker. Here we report results collected at T0 and at a 24-month follow-up (T1). Eighteen RRMS patients (11 females, median Expanded Disability Status Scale-EDSS score 1.25, range EDSS score 0–2) were monitored at T0 (mean age 32.33 ± 7.51) and T1 (median EDSS score 1.5, range EDSS score 0–2.5). Patients were grouped into two groups: responders (R, 14 patients) and non-responders (NR, 4 patients) to treatment at T1. Each patient wore an actigraph for one week to record the 24-h motor activity pattern. At T0, NR presented significantly lower motor activity than R between around 9:00 and 13:00. At T1, NR were characterized by significantly lower motor activity than R between around 12:00 and 17:00. Overall, these data suggest that through the 24-h motor activity pattern, we can fairly segregate at T0 patients who will show a therapeutic failure, possibly related to a more active disease, at T1. These patients are characterized by a reduced morning level of motor activation. Further studies on larger populations are needed to confirm these preliminary findings.

scholarly journals Efficacy and Safety of Teriflunomide in Multiple Sclerosis across Age Groups: Analysis from Pooled Pivotal and Real-world Studies

2021 ◽  
Vol 13 ◽  
pp. 117957352110287
Author(s):  
Jiwon Oh ◽  
Sandra Vukusic ◽  
Klaus Tiel-Wilck ◽  
Jihad Said Inshasi ◽  
David Rog ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Real World ◽  
Age Groups ◽  
Phase Iii ◽  
Efficacy And Safety ◽  
Additional Group ◽  
Disability Status ◽  
Scale Scores ◽  
Post Hoc ◽  
Phase Ii And Iii

Background: Evidence suggests that efficacy and safety of disease-modifying treatments for multiple sclerosis may differ with age. We evaluate efficacy and safety of teriflunomide across age subgroups of patients from pooled clinical trials and real-world studies. Methods: Post hoc analyses of patients who received teriflunomide 14 mg in the pooled phase II and III TEMSO, TOWER, TENERE, and TOPIC core and extension studies (n = 1978), and the real-world Teri-PRO (n = 928) and TAURUS-MS I (n = 1126) studies were conducted. Data were stratified by age at study entry: ⩽25, >25 to ⩽35, >35 to ⩽45, and >45 years. In Teri-PRO and TAURUS-MS I, an additional group, >55 years, was assessed. Results: In the pooled core studies, teriflunomide reduced annualized relapse rate (ARR) versus placebo across all ages. Unadjusted ARRs remained low across age groups in pooled extensions (0.18-0.30), Teri-PRO (0.10-0.35), and TAURUS-MS I (0.14-0.35). Baseline Expanded Disability Status Scale scores were higher with age, but stable through core and extension studies (mean increases over 7 years: ⩽25 years, +0.59; >25 to ⩽35 years, +0.46; >35 to ⩽45 years, +0.35; >45 years, +0.81). Across age groups, adverse event (AE) incidences were 78.4% to 90.7% in pooled core and extension studies and Teri-PRO, and 29.2% to 37.7% in TAURUS-MS I; serious AE incidences were ⩽21.3% in all studies. In pooled phase III and Teri-PRO studies, lymphocyte count decreases over 1 year after initiating teriflunomide, and proportions of patients developing lymphopenia, were small across age groups. Conclusions: Teriflunomide efficacy was demonstrated regardless of age. Safety was generally consistent across age groups.

Walking capacities in multiple sclerosis measured by global positioning system odometer

2007 ◽  
Vol 13 (2) ◽  
pp. 220-223 ◽  
Author(s):  
A Créange ◽  
I Serre ◽  
M Levasseur ◽  
D Audry ◽  
A Nineb ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Global Positioning System ◽  
Walking Speed ◽  
Walking Distance ◽  
Expanded Disability Status Scale ◽  
Satellite Technology ◽  
Promising Tool ◽  
Disability Status ◽  
Global Positioning

We used a global positioning satellite technology odometer to determine the maximum objective walking distance capacity (MOWD) of patients with multiple sclerosis (MS). The MOWD correlated with Expanded Disability Status Scale (EDSS) score (r2 =0.41; P < 0.0001), the MSWS-12 scale (r2 = 0.46; P < 0.0001), time to walk 10 m (r2 = 0.51; P < 0.02) and walking speed (r2 =0.75; P < 0.001). Limitation of walking capacities was measurable up to 4550 m, strikingly above the 500-m limit of the EDSS. This objective odometer is a promising tool for evaluation and follow-up of patients with MS. Multiple Sclerosis 2007; 13: 220–223. http://msj.sagepub.com

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