Measuring burden in caregivers of people with multiple sclerosis: psychometric properties of the CSI questionnaire

Jose M García-Domínguez,1 María L Martínez-Ginés,1 Olga Carmona,2 Ana B Caminero,3 Daniel Prefasi,4 Jorge Maurino,4 Javier Ballesteros5 On behalf of the W-IMPACT Clinical Investigators 1Department of Neurology, Hospital Universitario Gregorio Marañón, Madrid, Spain; 2Department of Neurology, Hospital de Figueres, Figueres, Spain; 3Department of Neurology, Hospital Nuestra Señora de Sonsoles, Complejo Asistencial de Ávila, Ávila, Spain; 4Medical Department, Roche Farma, Madrid, Spain; 5Department of Neurosciences and CIBERSAM, Universidad del País Vasco, Leioa, Spain Background: Understanding caregiver strain may be crucial to determine which interventions are most needed to mitigate the negative impact of caring for people with multiple sclerosis (MS). The Caregiver Strain Index (CSI) is a brief self-assessment tool for measuring the caregivers’ perceived level of burden. Limited information is available on the psychometric performance of the CSI in MS.Objective: The objective of this study was to assess the factor structure and construct validity of the CSI in MS.Methods: A multicenter, cross-sectional study in adults with relapsing-remitting and primary-progressive MS (McDonald 2010 criteria) was conducted. A non-parametric item response theory (IRT) procedure, Mokken analysis, was conducted to assess the dimensional structure of the CSI. A parametric IRT model for dichotomous responses, Rasch model, was conducted to assess item characteristics. Discriminative validity was assessed comparing the distribution of its overall score between people with mild and moderate-severe disability according to the Expanded Disability Status Scale.Results: A total of 72 MS caregivers were studied. The prevalence of a high level of strain was 23.6% (n=17). Internal reliability was high (Cronbach’s alpha =0.91). According to Mokken analysis, CSI represented a unidimensional construct of caregiver burden although two of the total 13 items (#1 and #13) could not be assigned to any factor by an automatic item selection procedure. Without these items, the scalability moved from a weak (Hi =0.37) to a medium scale (Hi =0.44). However, the item characteristic curve of the Rasch model showed a range of appropriate difficulty and the item and person parameters showed good fit (Andersen likelihood ratio test =18.40, df =11; P-value =0.07; all item values for the infit). The CSI score showed a good discriminative validity between the levels of disability of the care recipient.Conclusion: The CSI questionnaire shows appropriate psychometric characteristics being a useful instrument to assess different aspects of burden in MS caregivers in clinical practice. Keywords: caregivers, multiple sclerosis, psychometrics, caregiver burden, strai

Spanish validation of a specific measure to assess work-related problems in people with multiple sclerosis: the Multiple Sclerosis Work Difficulties Questionnaire (MSWDQ-23)

Introduction: Unemployment is a significant problem for people with multiple sclerosis (MS). The MS Work Difficulties Questionnaire (MSWDQ-23) is a self-report tool to assess work-related problems in people with MS across three domains: physical, psychological/cognitive, and external barriers. The aim of this study was to assess the psychometric properties of the Spanish version of the MSWDQ-23. Methods: A multicentre, non-interventional, cross-sectional study in adult patients with relapsing-remitting multiple sclerosis (RRMS) or primary progressive (PPMS) multiple sclerosis (McDonald 2010 criteria) was conducted. Socio-demographic and clinical characteristics as well as health-related quality of life using the 29- item Multiple Sclerosis Impact Scale (MSIS-29) were collected. Results: A total of 201 subjects were studied (mean age: 43.9 years, 60% female, 86% with RRMS). Median Expanded Disability Status Scale (EDSS) (score: 2.0 [IQR: 1.0–3.5]). The employment rate was 47.3% (n = 95). The MSWDQ-23 was feasible (90% response rate), with high internal consistency and test-retest reliability (Cronbach's alpha = 0.94 and intraclass correlation coefficient-ICC > 0.87). MSWDQ-23 scores significantly and positively correlated with EDSS and both MSIS-29 physical and psychological subscales scores, showing an adequate convergent validity. Regarding construct validity, scores of patients with PPMS were higher than those of patients with RRMS, reaching statistically significance in MSWDQ-23 physical barriers domain and total scores. Conclusion: The Spanish version of the MSWDQ-23 shows appropriate feasibility, reliability, and discriminative performance as a patient-reported outcome. MSWDQ-23 may be a valuable addition to measure the impact of a comprehensive spectrum of difficulties experienced by people with MS in the workplace.</p

Quantifying the patient's perspective in neuromyelitis optica spectrum disorder : Psychometric properties of the SymptoMScreen questionnaire

Altres ajuts: Medical Department of Roche Farma Spain (ML41397).Background The assessment of self-reported outcomes in neuromyelitis optica spectrum disorder (NMOSD) is limited by the lack of validated disease-specific measures. The SymptoMScreen (SyMS) is a patient-reported questionnaire for measuring symptom severity in different domains affected by multiple sclerosis (MS), but has not been thoroughly evaluated in NMOSD. The aim of this study was to assess the psychometric properties of the SyMS in a sample of patients with NMOSD. Methods A non-interventional, cross-sectional study in adult subjects with NMOSD (Wingerchuk 2015 criteria) was conducted at 13 neuroimmunology clinics applying the SyMS. A nonparametric item response theory procedure, Mokken analysis, was performed to assess the underlying dimensional structure and scalability of items and overall questionnaire. All analyses were performed with R (v4.0.3) using the mokken library. Results A total of 70 patients were studied (mean age: 47.5 ± 15 years, 80% female, mean Expanded Disability Status Scale score: 3.0 [interquartile range 1.5, 4.5]). Symptom severity was low (median SyMS score: 19.0 [interquartile range 10.0, 32.0]). The SyMS showed a robust internal reliability (Cronbach's alpha: 0.90 [95% confidence interval 0.86, 0.93]) and behaved as a unidimensional scale with all items showing scalability coefficients > 0.30. The overall SyMS scalability was 0.45 conforming to a medium scale according to Mokken's criteria. Fatigue and body pain were the domains with the highest scalability coefficients. The SyMS was associated with disability (rho: 0.586), and physical and psychological quality of life (rho: 0.856 and 0.696, respectively). Conclusions The SyMS shows appropriate psychometric characteristics and may constitute a valuable and easy-to-implement option to measure symptom severity in patients with NMOSD

Safety and outcomes of intravenous thrombolysis in dissection-related ischemic stroke: an international multicenter study and comprehensive meta-analysis of reported case series

The safety and efficacy of intravenous thrombolysis (IVT) in dissection-related ischemic stroke (DRIS) has not been established. We sought to determine safety and recovery rates of IVT in DRIS using prospective, international, multicenter data and by conducting a comprehensive meta-analysis of reported case series. We analyzed consecutive DRIS patients treated with IVT according to national guidelines during a 5-year period at six tertiary-care stroke centers, and also conducted a comprehensive review and meta-analysis of all available case series reporting safety outcomes in DRIS treated with IVT according to PRISMA guidelines. A total of 39 DRIS patients (mean age 60 ± 18 years; 59 % men; median NIHSS 13 points, IQR 9–17) received IVT in our multicenter study. Symptomatic intracranial hemorrhage (sICH), in-hospital mortality, complete recanalization, favorable functional outcome (FFO; mRS-score of 0–1) and functional independence (FI; mRS-score of 0–2) were 0 % (adjusted Wald 95 % CI 0–8 %), 10 % (3–24 %), 55 % (40–70 %), 61 % (45–74 %) and 68 % (52–81 %). The pooled sICH and mortality rates in meta-analysis including 10 case series (234 IVT-DRIS patients) were 2 % (0–5 %) and 4 % (0–8 %). The pooled recanalization, FFO and FI rates were 45 % (26–67 %), 41 % (29–54 %) and 61 % (48–72 %), respectively. Substantial heterogeneity was only found for FFO (I2 = 61 %; p = 0.006). Subsequent meta-regression analysis identified baseline NIHSS and dissection in the posterior circulation as independent predictors of FFO (p < 0.05), accounting for FFO variance across different studies. Our prospective, international data coupled with comprehensive meta-analysis results underscore IVT safety in DRIS, while further independent validation is required in larger observational registries or RCTs.SCOPUS: ar.jinfo:eu-repo/semantics/publishe