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1.
Mult Scler ; 30(7): 868-876, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38717089

RESUMEN

BACKGROUND: There is limited information on interpretation of cognitive changes over time in multiple sclerosis (MS). OBJECTIVE: This study aimed to provide normative data for the assessment of statistically meaningful change in all tests of the Minimal Assessment of Cognitive Function in MS (MACFIMS). METHODS: We applied the reliable change methodology to a healthy Italian cohort, assessed with two alternate versions of the MACFIMS 1 year apart. We calculated confidence intervals of retest score variance using the reliable change index (RCI). Moreover, multivariable linear regression models adjusted for age, sex, education, and baseline score were built to calculate the regression-based change index (RB-CI). RESULTS: Overall, 200 healthy individuals were enrolled. Thresholds for interpreting change in each test were calculated. In the multivariable models, baseline score was associated with retest score in all tests (B from 0.439 to 0.760; p < 0.001). RB-CI can be calculated with data of the multivariable models. CONCLUSION: We provide normative data for reliable cognitive change evaluation for all the tests of the MACFIMS, which includes the Symbol Digit Modalities Test and Brief International Cognitive Assessment in MS, two widely used tools for screening and monitoring cognition in MS. Our findings can significantly improve the interpretation of cognitive changes in MS.


Asunto(s)
Disfunción Cognitiva , Esclerosis Múltiple , Pruebas Neuropsicológicas , Humanos , Femenino , Masculino , Esclerosis Múltiple/complicaciones , Esclerosis Múltiple/fisiopatología , Adulto , Persona de Mediana Edad , Pruebas Neuropsicológicas/normas , Disfunción Cognitiva/diagnóstico , Disfunción Cognitiva/etiología , Disfunción Cognitiva/fisiopatología , Cognición/fisiología , Adulto Joven
2.
Health Qual Life Outcomes ; 21(1): 61, 2023 Jun 25.
Artículo en Inglés | MEDLINE | ID: mdl-37357308

RESUMEN

BACKGROUND: The Multiple Sclerosis Quality of Life-54 (MSQOL-54) is one of the most commonly-used MS-specific health-related quality of life (HRQOL) measures. It is a multidimensional, MS-specific HRQOL inventory, which includes the generic SF-36 core items, supplemented with 18 MS-targeted items. Availability of an adaptive short version providing immediate item scoring may improve instrument usability and validity. However, multidimensional computerized adaptive testing (MCAT) has not been previously applied to MSQOL-54 items. We thus aimed to apply MCAT to the MSQOL-54 and assess its performance. METHODS: Responses from a large international sample of 3669 MS patients were assessed. We calibrated 52 (of the 54) items using bifactor graded response model (10 group factors and one general HRQOL factor). Then, eight simulations were run with different termination criteria: standard errors (SE) for the general factor and group factors set to different values, and change in factor estimates from one item to the next set at < 0.01 for both the general and the group factors. Performance of the MCAT was assessed by the number of administered items, root mean square difference (RMSD), and correlation. RESULTS: Eight items were removed due to local dependency. The simulation with SE set to 0.32 (general factor), and no SE thresholds (group factors) provided satisfactory performance: the median number of administered items was 24, RMSD was 0.32, and correlation was 0.94. CONCLUSIONS: Compared to the full-length MSQOL-54, the simulated MCAT required fewer items without losing precision for the general HRQOL factor. Further work is needed to add/integrate/revise MSQOL-54 items in order to make the calibration and MCAT performance efficient also on group factors, so that the MCAT version may be used in clinical practice and research.


Asunto(s)
Pruebas Adaptativas Computarizadas , Esclerosis Múltiple , Calidad de Vida , Pruebas Adaptativas Computarizadas/métodos , Simulación por Computador , Esclerosis Múltiple/diagnóstico , Encuestas y Cuestionarios , Humanos , Adolescente , Adulto , Persona de Mediana Edad , Anciano , Anciano de 80 o más Años , Psicometría
3.
Neurol Sci ; 43(3): 1903-1910, 2022 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-34363548

RESUMEN

OBJECTIVE: Health professionals caring for persons with multiple sclerosis (MS) are faced with increasingly complex working conditions that can undermine their job satisfaction and the quality of their healthcare services. The aim of this study was to delve into health professionals' job satisfaction by assessing the predictive role of happiness and meaning at work. Specifically, it was hypothesized that job meaning would moderate the relationship between job happiness and satisfaction. METHODS: The study hypothesis was tested among 108 healthcare professionals (53 physicians and 55 nurses) working in eight MS centers in Italy. Participants were administered the Eudaimonic and Hedonic Happiness Investigation and the Job Satisfaction Questionnaire. Hierarchical regression analysis was performed to test the moderating role of job meaning between job happiness and satisfaction. RESULTS: A significant interaction effect of job happiness and meaning on job satisfaction was identified for both physicians and nurses. When work was attributed low meaning, participants experiencing high job happiness were more satisfied with their work than those reporting low happiness; by contrast, when work was perceived as highly meaningful, participants' levels of job happiness did not significantly contribute to job satisfaction. CONCLUSIONS: Focusing on the interplay between job happiness and meaning, findings bring forward practical suggestions for the preservation and promotion of job satisfaction among health professionals working with MS patients. Particularly, they suggest the need to strengthen those job-related aspects that may enhance job meaning, thus providing health professionals with significant reasons to persevere in their work in the face of daily challenges.


Asunto(s)
Esclerosis Múltiple , Médicos , Felicidad , Humanos , Satisfacción en el Trabajo , Encuestas y Cuestionarios
4.
Health Qual Life Outcomes ; 19(1): 224, 2021 Sep 25.
Artículo en Inglés | MEDLINE | ID: mdl-34563229

RESUMEN

BACKGROUND: MSQOL-54 is a multidimensional, widely-used, health-related quality of life (HRQOL) instrument specific for multiple sclerosis (MS). Findings from the validation study suggested that the two MSQOL-54 composite scores are correlated. Given this correlation, it could be assumed that a unique total score of HRQOL may be calculated, with the advantage to provide key stakeholders with a single overall HRQOL score. We aimed to assess how well the bifactor model could account for the MSQOL-54 structure, in order to verify whether a total HRQOL score can be calculated. METHODS: A large international database (3669 MS patients) was used. By means of confirmatory factor analysis, we estimated a bifactor model in which every item loads onto both a general factor and a group factor. Fit of the bifactor model was compared to that of single and two second-order factor models by means of Akaike information and Bayesian information criteria reduction. Reliability of the total and subscale scores was evaluated with Mc Donald's coefficients (omega, and omega hierarchical). RESULTS: The bifactor model outperformed the two second-order factor models in all the statistics. All items loaded satisfactorily (≥ 0.40) on the general HRQOL factor, except the sexual function items. Omega coefficients for total score were very satisfactory (0.98 and 0.87). Omega hierarchical for subscales ranged between 0.22 to 0.57, except for the sexual function (0.70). CONCLUSIONS: The bifactor model is particularly useful when it is intended to acknowledge multidimensionality and at the same time take account of a single general construct, as the HRQOL related to MS. The total raw score can be used as an estimate of the general HRQOL latent score.


Asunto(s)
Esclerosis Múltiple/psicología , Calidad de Vida , Encuestas y Cuestionarios/normas , Teorema de Bayes , Análisis Factorial , Humanos , Modelos Estadísticos , Modelos Teóricos , Reproducibilidad de los Resultados
5.
J Clin Psychol Med Settings ; 28(1): 149-160, 2021 03.
Artículo en Inglés | MEDLINE | ID: mdl-31872372

RESUMEN

This study investigated the relationship of illness beliefs with perceived physical health and fatigue among persons with multiple sclerosis. Besides direct effects between illness beliefs and outcome measures, the mediational role of coping strategies and social support was examined. Six hundred and eighty persons with multiple sclerosis completed the Revised Illness Perception Questionnaire evaluating illness beliefs; the Brief COPE measuring problem-focused, meaning-focused, and avoidant strategies; the Multidimensional Scale of Perceived Social Support assessing social support; MS Quality of Life-54 investigating perceived physical health; and the Fatigue Severity Scale assessing physical fatigue. Mediation analyses were performed controlling for disability level. Direct effects were identified for both perceived physical health and fatigue, whereas indirect effects were observed only for physical health through avoidant strategies and social support. Based on present findings, psychological intervention may primarily target illness beliefs to address fatigue, and beliefs and coping strategies to improve perceived physical health.


Asunto(s)
Esclerosis Múltiple , Adaptación Psicológica , Fatiga/etiología , Humanos , Esclerosis Múltiple/complicaciones , Calidad de Vida , Apoyo Social , Encuestas y Cuestionarios
6.
Qual Life Res ; 29(3): 783-791, 2020 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-31707695

RESUMEN

PURPOSE: The Multiple Sclerosis Quality of Life-54 (MSQOL-54) is a specific multiple sclerosis (MS) health-related quality of life inventory consisting of 52 items organized into 12 subscales plus two single items. No study was found in literature assessing its measurement invariance across language versions. We investigated whether MSQOL-54 items provide unbiased measurements of underlying constructs across Italian and English versions. METHODS: Three constrained levels of measurement invariance were evaluated: configural invariance where equivalent numbers of factors/factor patterns were required; metric invariance where equivalent factor loadings were required; and scalar invariance where equivalent item intercepts between groups were required. Comparative fit index (CFI), root mean square error of approximation (RMSEA), and standardized root mean square residual (SRMR) fit indices and their changes between nested models were used to assess tenability of invariance constraints. RESULTS: Overall, the dataset included 3669 MS patients: 1605 (44%) Italian, mean age 41 years, 62% women, 69% with mild level of disability; 2064 (56%) English-speaking (840 [41%] from North America, 797 [39%] from Australasia, 427 [20%] from UK and Ireland), mean age 46 years, 83% women, 54% with mild level of disability. The configural invariance model showed acceptable fit (RMSEA = 0.052, CFI = 0.904, SRMR = 0.046); imposing loadings and intercepts equality constraints produced negligible worsening of fit (ΔRMSEA < 0.001, ΔCFI = - 0.002, ΔSRMR = 0.002 for metric invariance; ΔRMSEA = 0.003, ΔCFI = - 0.013, ΔSRMR = 0.003 for scalar invariance). CONCLUSIONS: These findings support measurement invariance of the MSQOL-54 across the two language versions, suggesting that the questionnaire has the same meaning and the same measurement paramaters in the Italian and English versions.


Asunto(s)
Estado de Salud , Esclerosis Múltiple/psicología , Psicometría/métodos , Calidad de Vida/psicología , Adulto , Análisis Factorial , Femenino , Humanos , Irlanda , Lenguaje , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios
7.
Neurol Sci ; 41(6): 1489-1496, 2020 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-31953702

RESUMEN

Cognitive impairment is common in multiple sclerosis (MS), and research has emphasized the crucial role of cognitive assessment in disease monitoring. The minimal neuropsychological assessment of MS (MACFIMS) represents one of the neuropsychological batteries most widely used throughout the world. To date, a complete validation, as well as normative values of an alternative form, is lacking in the Italian population, limiting the use of this tool in longitudinal assessment. A total of 200 healthy subjects (127 females and 73 males) were recruited from the community in 8 Italian cities and were evaluated with the MACFIMS at baseline and reassessed with an alternate form of the same battery after 12 months. Regression-based norms that account for demographic influences on test performance were calculated at each time point (baseline and follow-up). The study provides, for the first time, normative values of two forms of the MACFIMS battery for the Italian population. Data application allows clinicians to monitor the performance of cognitive functions over time and to better understand the efficacy of both pharmacological and non-pharmacological interventions in clinical practice and research.


Asunto(s)
Disfunción Cognitiva/diagnóstico , Esclerosis Múltiple/diagnóstico , Pruebas Neuropsicológicas/normas , Adolescente , Adulto , Anciano , Disfunción Cognitiva/etiología , Femenino , Estudios de Seguimiento , Humanos , Italia , Masculino , Persona de Mediana Edad , Esclerosis Múltiple/complicaciones , Valores de Referencia , Reproducibilidad de los Resultados , Adulto Joven
8.
Neurol Sci ; 41(7): 1881-1889, 2020 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-32095946

RESUMEN

OBJECTIVES: Informal caregivers provide fundamental help to persons with multiple sclerosis through a variety of tasks ranging from practical assistance to psychological support. Caregiving Tasks in Multiple Sclerosis Scale (CTiMSS) is a reliable and valid measure assessing the complex structure of caregiving tasks within the context of multiple sclerosis. The present study was aimed to test the validity and reliability of the Italian translation of CTiMSS in a sample of informal caregivers of persons with multiple sclerosis. METHODS: A total of 580 caregivers (51.4% women, aged 18-81, M = 46.47, SD = 12.8) together with their care recipients (63.1% women, aged 19-60, M = 40.08, SD = 9.9) were involved in this study. Exploratory and confirmatory factor analyses with a split-sample approach were employed to evaluate construct validity. Convergent and discriminant validity were assessed using correlation indices with scales from Short Form Health Survey-36 and Positive and Negative Affect Schedule. Cronbach's alphas were used as a measure of reliability. RESULTS: Compared with the original CTiMSS 4-factor structure, a more stable and valid solution with 3 first-order factor loading on a single second-order factor was evaluated and confirmed; convergent and discriminant validity were also supported, and Cronbach's alpha values highlighted good-to-excellent reliability levels. CONCLUSION: Results supported the validity and reliability of the Italian CTiMSS. Thanks to its ability to assess specific caregiving tasks, the measure can be a useful instrument for tailoring intervention focused on the promotion of both caregivers' and care recipients' quality of life.


Asunto(s)
Esclerosis Múltiple , Calidad de Vida , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Cuidadores , Femenino , Humanos , Italia , Masculino , Persona de Mediana Edad , Psicometría , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Adulto Joven
9.
Mult Scler ; 25(6): 856-866, 2019 05.
Artículo en Inglés | MEDLINE | ID: mdl-29761738

RESUMEN

BACKGROUND: We recently devised a shortened version of the 54-item Multiple Sclerosis Quality of Life (MSQOL-54) in paper (MSQOL-29, consisting of 25 items forming 7 subscales and 4 single items, and one filter question for 3 'sexual function' items) and electronic format (eMSQOL-29). OBJECTIVES: To prospectively assess eMSQOL-29 psychometric properties, acceptability/equivalence versus MSQOL-29. METHODS: Multiple sclerosis (MS) patients ( n = 623; Expanded Disability Status Scale (EDSS) range 0.0-9.0) completed eMSQOL-29, Hospital Anxiety and Depression Scale, Functional Assessment of MS (FAMS), European Quality of life Five Dimensions-3L, and received EDSS and Symbol Digit Modalities Test (SDMT). Equivalence versus MSQOL-29 was assessed in 242 patients (randomized cross-over design). RESULTS: 'Sexual function' items were filtered out by 273 patients (47%). No multi-item scale had floor effect, while five had ceiling effect. Cronbach's alpha range was 0.88-0.90. Confirmatory factor analysis showed good overall fit and the two-factor solution for composite scores was confirmed. Criterion validity was sub-optimal for 'cognitive function' (vs SDMT, r = 0.25) and 'social function' (vs FAMS social function, r = 0.38). eMSQOL-29 equivalence was confirmed and its acceptability was good. CONCLUSION: eMSQOL-29 showed good internal consistency, factor structure and no floor effect, while most subscales had some ceiling effect. Criterion validity was sub-optimal for two subscales. Equivalence and acceptability were good.


Asunto(s)
Esclerosis Múltiple/psicología , Medición de Resultados Informados por el Paciente , Psicometría/normas , Calidad de Vida/psicología , Adulto , Anciano , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estudios Prospectivos , Psicometría/instrumentación , Reproducibilidad de los Resultados , Adulto Joven
10.
Mult Scler ; 24(6): 813-815, 2018 05.
Artículo en Inglés | MEDLINE | ID: mdl-29359617

RESUMEN

BACKGROUND: Alemtuzumab, approved for multiple sclerosis (MS), can cause secondary autoimmune adverse events including thyroid disorders, immune thrombocytopenia (ITP), and glomerular nephropathies. Non-ITP autoimmune cytopenias are rarely reported. OBJECTIVE: To report a case of autoimmune hemolytic anemia (AIHA) and nephropathy in a MS patient treated with alemtuzumab. CASE REPORT: A 34-year-old man with MS developed albuminuria and AIHA after the first and only alemtuzumab treatment, with positive Coombs' direct and indirect tests and IgG autoantibodies. Both AIHA and nephropathy resolved 1 month after treatment with steroids and intravenous immunoglobulins. CONCLUSION: Our report adds to literature on AIHA and nephropathy after alemtuzumab treatment and suggests to add Coombs' tests to the screening panel required for alemtuzumab treatment.


Asunto(s)
Albuminuria/inducido químicamente , Alemtuzumab/efectos adversos , Anemia Hemolítica Autoinmune/inducido químicamente , Factores Inmunológicos/efectos adversos , Esclerosis Múltiple Recurrente-Remitente/tratamiento farmacológico , Adulto , Humanos , Masculino
11.
Health Expect ; 19(2): 437-47, 2016 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-25912002

RESUMEN

BACKGROUND AND OBJECTIVE: An investigation of the domains Italian patients with multiple sclerosis (MS) named as constituting their quality of life over time. DESIGN: We assessed, in 68 patients, QoL domains using the Schedule for the Evaluation of Individual QoL: (a) before MS diagnosis disclosure, (b) thirty days after disclosure, and (c) after one and (d) four years' follow-up. RESULTS: The life domains most frequently named by patients were as follows: Family, Work and Finance, Hobbies, Health, Relationship with Friends and Job Effectiveness. Only Health and Job Effectiveness domains varied with time. The Health domain became a critical dimension when MS diagnosis was revealed. In addition, patients tended to be more satisfied with their health after disclosure compared to pre-diagnosis. Job Effectiveness seemed to be an important aspect until 1 year after diagnosis disclosure, but it tended to become less crucial over time. Family seems to be the most important domain over time, and psychological adaptation to MS seems to be characterized by a reconceptualization of aspects that revolve around oneself, such as professional success, rather than relational or affective factors. CONCLUSIONS: Evaluating the most relevant life domains for patients and their alteration over time may provide practitioners with an important tool in making health-related decisions, thus improving health outcomes and QoL.


Asunto(s)
Revelación , Esclerosis Múltiple/psicología , Calidad de Vida , Adulto , Empleo , Familia/psicología , Femenino , Estado de Salud , Humanos , Italia , Masculino , Esclerosis Múltiple/diagnóstico
12.
J Clin Psychol Med Settings ; 23(1): 33-52, 2016 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-26216661

RESUMEN

This study jointly examined illness beliefs held by persons with multiple sclerosis (PwMS) and caregivers in relation to well-being. A group of 68 PwMS and their caregivers completed the Revised Illness Perception Questionnaire, Psychological Well-being Scales, Satisfaction with Life Scale and Positive Affect and Negative Affect Schedule. Findings revealed that PwMS' well-being was primarily predicted by their own illness beliefs, and that also caregivers' well-being was primarily predicted by their own beliefs. Across the two groups, well-being was positively associated with their belief that they understood the disease, and inversely associated with their representations of negative emotions. In addition, among PwMS, well-being was inversely associated with the number of symptoms they specifically attributed to their illness, while among caregivers, well-being was positively associated with beliefs that treatment could control the disease. Based on the study findings, psychoeducational and cognitive-behavioral strategies are suggested to promote well-being among PwMS and caregivers.


Asunto(s)
Actitud Frente a la Salud , Cuidadores/psicología , Esclerosis Múltiple/psicología , Satisfacción Personal , Calidad de Vida/psicología , Adulto , Afecto , Cuidadores/estadística & datos numéricos , Femenino , Humanos , Masculino , Persona de Mediana Edad , Índice de Severidad de la Enfermedad , Encuestas y Cuestionarios
13.
BMC Neurol ; 15: 204, 2015 Oct 15.
Artículo en Inglés | MEDLINE | ID: mdl-26472052

RESUMEN

BACKGROUND: Recently, a Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS) has been developed as an international and standardized brief cognitive test, which is easily performed in everyday clinical practice for neuropsychological assessment in multiple sclerosis (MS). However, we need to gather more information about this tool compared to other neuropsychological batteries. The aim of our study is to compare the performance of BICAMS and Brief Repeatable Battery (BRB) in MS subjects. METHODS: Tests of the BRB and BICAMS were administered to MS patients recruited from 11 Italian MS centres. Cognitive impairment (CI) was defined as the failure on at least two tests (scores below the fifth percentile) on the BRB and as the failure on at least one test of the BICAMS. The agreement between the performances on the two batteries was assessed through Cohen's K statistic. Finally we calculated the effects sizes for each test of the two batteries using Cohen's d. RESULTS: The two batteries were administered to 192 MS patients (142 women, 50 men; mean age 41.4 ± 10.8 years, mean education 12.3 ± 3.5 years). Mean scores of patients were lower compared to those of healthy subjects in all the cognitive measures examined. Forty-six MS patients were identified as impaired and 48 as unimpaired on both of the batteries, when the Symbol Digit Modalities Test (SDMT) was included in the analysis. Cohen's K statistic was 0.46 which corresponds to a moderate accord. If the SDMT was excluded from the BRB, 37 MS patients were identified as impaired and 57 as unimpaired on both of the batteries. Cohen's K statistic was 0.3 which corresponds to a poor accord. The SDMT, the Paced Auditory Serial Addition Test (PASAT) 3 and 2 yielded higher d values (SDMT 0.83, PASAT 3 0.65, PASAT 2 0.84). CONCLUSIONS: This study confirms the feasibility of BICAMS in everyday clinical practice for the identification of CI and highlights the good psychometric properties of the SDMT.


Asunto(s)
Trastornos del Conocimiento/diagnóstico , Esclerosis Múltiple/diagnóstico , Pruebas Neuropsicológicas/normas , Psicometría/instrumentación , Adulto , Trastornos del Conocimiento/etiología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Esclerosis Múltiple/complicaciones
14.
BMC Neurol ; 14: 171, 2014 Sep 10.
Artículo en Inglés | MEDLINE | ID: mdl-25204350

RESUMEN

BACKGROUND: BICAMS (Brief International Cognitive Assessment for Multiple Sclerosis) has been recently developed as brief, practical and universal assessment tool for cognitive impairment in MS subjects. It includes the Symbol Digit Modalities Test (SDMT), the California Verbal Learning Test-2 (CVLT2) and the Brief Visuospatial Memory Test-Revised (BVMT-R) . In this study we aimed at gathering regression based normative data for the BICAMS battery in the Italian population. METHODS: Healthy subjects were consecutively recruited among patient friends and relatives. Corrections for demographics were calculated using multivariable linear regression models. Test-retest reliability was assessed using the Pearson correlation coefficient. RESULTS: The BICAMS battery was administered to 273 healthy subjects (180 women, mean age 38.9 ± 13.0 years, mean education 14.9 ± 3.0 years). Test-retest reliability was good for all the tests. CONCLUSIONS: The study provided normative data of the BICAMS for the Italian population confirming good test-retest reliability which can facilitate the use of the battery in clinical practice, also for longitudinal patient assessments.


Asunto(s)
Trastornos del Conocimiento/diagnóstico , Esclerosis Múltiple/diagnóstico , Pruebas Neuropsicológicas/normas , Adolescente , Adulto , Anciano , Trastornos del Conocimiento/etiología , Femenino , Voluntarios Sanos , Humanos , Italia , Masculino , Persona de Mediana Edad , Esclerosis Múltiple/complicaciones , Valores de Referencia , Reproducibilidad de los Resultados , Adulto Joven
15.
Rehabil Psychol ; 68(3): 289-300, 2023 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-37199978

RESUMEN

PURPOSE/OBJECTIVE: Within the framework of the Salutogenic Model of Health, this study aimed to investigate sense of coherence among caregiving partners of persons with multiple sclerosis (PwMS), and its relationship with perceived social support and illness beliefs conceived as generalized resistance resources in tension management. RESEARCH METHOD/DESIGN: In this cross-sectional study, 398 caregiving partners of PwMS (Mage = 44.62; 34.9% women and 65.1% men) filled in questionnaires measuring sense of coherence (Sense of Coherence Scale-13), perceived social support from family, friends and significant others (Multidimensional Scale of Perceived Social Support), and illness beliefs (Revised Illness Perception Questionnaire). Hierarchical linear regression analysis was performed to assess the contribution of perceived support and illness beliefs to sense of coherence, controlling for sociodemographic and clinical variables. RESULTS: Perceived support from family and beliefs concerning illness-related emotional representations, illness coherence, and treatment control emerged as significant predictors of participants' sense of coherence. Higher perceived support from family and stronger beliefs in illness coherence and treatment control were associated with higher sense of coherence, while more negative emotional representations were related to lower sense of coherence values. CONCLUSIONS/IMPLICATIONS: Findings lend support to the relevance of a salutogenic approach to caregiving in multiple sclerosis. They further suggest the usefulness of interventions that can promote caregivers' sense of coherence and successful coping in life by benefitting from family support, favoring the construction of a coherent illness view, offering comprehensive information and expert guidance on treatment and rehabilitation opportunities, and promoting adaptive management of negative emotions. (PsycInfo Database Record (c) 2023 APA, all rights reserved).


Asunto(s)
Esclerosis Múltiple , Sentido de Coherencia , Masculino , Humanos , Femenino , Adulto , Estudios Transversales , Adaptación Psicológica , Emociones , Cuidadores/psicología , Encuestas y Cuestionarios
16.
PLoS One ; 15(2): e0228587, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32053608

RESUMEN

BACKGROUND: Conversion to secondary progressive multiple sclerosis (SPMS) is associated with a relatively poor prognosis, and SPMS is responsible for the majority of the social and economic costs associated with MS. Managing the Transition to SPMS (ManTra) is a mixed methods project conducted in Italy and Germany aimed to set up a user-led resource to empower and improve the quality of life of newly diagnosed SPMS patients. AIMS: To assess the experiences and the needs of Italian people who recently converted to SPMS, patient significant others (SOs), neurologists and other health professionals (HPs). METHODS: We conducted 15 personal semistructured interviews (PSIs) with SPMS patients who transitioned up to five years, and three focus group meetings (FGMs), one of SPMS SOs, one of neurologists, and one of other HPs. Participants were purposely selected from the three geographic areas of Italy, and varied in terms of gender, education and (for patients) disease severity. PSIs and FGMs were audiorecorded, transcribed and analyzed by two researchers using the framework analysis. RESULTS: One hundred sub-categories were identified, grouped into 13 categories and four themes: 'awareness of the transition', 'communication of the transition', 'dealing with symptoms worsening', and 'needs'. The major unmet needs were collected in four dimensions 'organization and management; 'empowerment training'; 'information'; and 'policies'. CONCLUSIONS: Two are the main findings: first, the widespread lack of awareness around the transition; second, the need to improve the quality of the care pathway in the Italian context. It was particularly stressed the need for a holistic and multidisciplinary approach (with patients and SOs as members of the team), the development of an ad hoc plan of follow up visits with easy access to MS specialists' consultation/treatment; specialized training for each stakeholders; more information on SPMS, daily management and changes at policy level.


Asunto(s)
Esclerosis Múltiple Crónica Progresiva/diagnóstico , Esclerosis Múltiple Crónica Progresiva/psicología , Adulto , Progresión de la Enfermedad , Femenino , Grupos Focales , Alemania/epidemiología , Personal de Salud , Humanos , Italia/epidemiología , Masculino , Persona de Mediana Edad , Neurología/organización & administración , Pronóstico , Investigación Cualitativa , Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como Asunto , Apoyo Social , Esposos
17.
J Neurol Sci ; 417: 117064, 2020 Oct 15.
Artículo en Inglés | MEDLINE | ID: mdl-32763510

RESUMEN

BACKGROUND: As available disease-modifying therapies (DMTs) increase, evaluating benefit/risk presents greater difficulties, requiring people with MS (PwMS) to play crucial roles in choosing treatment. Although individual attitude toward risk may predict this evaluation, its relation to personality is little studied in MS literature. OBJECTIVE: To prospectively assess risk attitudes and personality traits of PwMS choosing a DMT. METHODS: In three Italian MS centers (2012-2015), 420 PwMS completed an ad hoc questionnaire on socio-demographic variables, personality, and standard-gamble questions, to evaluate MS- and DMT-related risks through two hypothetical drug scenarios. We assessed the influence of previously collected socio-demographic/clinical characteristics, and personality factors on risk attitude. RESULTS: Almost half of participants were mainly concerned about progressive multifocal leukoencephalopathy; <25% about relapses. Median acceptable risk of death for both hypothetical drug scenarios was 1:10,000; 19-20% would not take any risk related to DMT. Regression analysis revealed that being male, more educated, and with higher impulsivity/sensation-seeking propensity was significantly associated with a higher risk attitude. CONCLUSIONS: Both socio-demographic and personality factors affect risk attitude of PwMS facing different DMT scenarios. These findings could affect the shared decision-making process in selecting best treatment option for PwMS.


Asunto(s)
Esclerosis Múltiple , Actitud , Humanos , Conducta Impulsiva , Italia , Masculino , Esclerosis Múltiple/tratamiento farmacológico , Personalidad
18.
Data Brief ; 29: 105341, 2020 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-32181303

RESUMEN

Alemtuzumab is approved for highly active MS and, in Europe, can be employed after other disease-modifying treatments (DMTs) as an escalation approach or first therapeutic option. The occurrence of secondary autoimmune adverse events and infections differs depending on the employed approach. In the manuscript entitled "Alemtuzumab treatment of multiple sclerosis in real-world clinical practice: report from a single Italian center" by di Ioia M. and collaborators, efficacy and safety data of alemtuzumab were evaluated in a real-world MS population. The aim of the article is to describe in detail the unexpected serious adverse events which occurred in this cohort during and after the administration of the alemtuzumab treatment. Adverse events were observed in 45,7% of the patients. These events were ranked as severe in 23% of the patients. We reported, in particular, cases of autoimmune hemolytic anemia (AIHA), pancytopenia, viral hepatitis E and noninfectious meningo-encephalomyelitis.

19.
Health Soc Care Community ; 28(1): 236-246, 2020 01.
Artículo en Inglés | MEDLINE | ID: mdl-31524966

RESUMEN

Informal caregivers play a crucial role in supporting persons with multiple sclerosis (MS), a neurodegenerative disease resulting in progressive worsening of physical and cognitive functioning. While research extensively showed that caregiving workload can be perceived as burdensome, little attention was devoted to the relation connecting workload and caregivers' well-being. Building on previous literature on stress and coping, the aim of this study was to test the mediational role of coping between caregivers' tasks and well-being. A group of 680 caregivers of persons with MS (M age = 46.45; 51.2% women) was recruited in eight Italian MS centres between June 2015 and December 2016. Caregiving tasks related to basic activities of daily living (ADL), instrumental ADL, psycho-emotional and social-practical care were assessed through the Caregiving Tasks in MS Scale; coping strategies (avoidance, criticism and coercion, practical assistance, supportive engagement, positive reframing) were investigated through the Coping with MS Caregiving Inventory; well-being was evaluated through the Psychological Well-Being Scales. Analyses substantiated a multi-mediation model including tasks in basic ADL, psycho-emotional and social-practical care, and the coping strategies avoidance, criticism/coercion, supportive engagement, positive reframing. Basic ADL care was negatively related to psychological well-being through lower use of supportive engagement and positive reframing. By contrast, psycho-emotional and social-practical tasks were both negatively and positively related to psychological well-being, through higher use of avoidance and criticism/coercion as well as supportive engagement and positive reframing. Findings suggest that caregiving tasks are not solely detrimental to well-being, but they may also provide a positive contribution through the adaptive coping strategies supportive engagement and positive reframing. Findings also highlighted task-specific areas that could be targeted in intervention in order to effectively lighten burden and promote well-being among caregivers.


Asunto(s)
Cuidadores/psicología , Empatía , Esclerosis Múltiple/psicología , Calidad de Vida/psicología , Estrés Psicológico/psicología , Actividades Cotidianas/psicología , Adaptación Psicológica , Adulto , Anciano , Femenino , Humanos , Italia , Masculino , Persona de Mediana Edad , Esclerosis Múltiple/enfermería , Apoyo Social
20.
Disabil Rehabil ; 42(26): 3780-3792, 2020 12.
Artículo en Inglés | MEDLINE | ID: mdl-31056979

RESUMEN

Purpose: The aim of this study was to test the Common Sense Model of Self-Regulation among persons with multiple sclerosis (MS), hypothesizing direct relations between illness beliefs and psychological adjustment, and indirect relations through coping strategies and social support.Materials and methods: Questionnaires were administered cross-sectionally to 680 participants (Mage =40.1; 64.4% women) recruited in eight MS units to assess illness beliefs, coping strategies, social support, and adjustment indicators including life satisfaction, psychological well-being, mental health, and depression. Multiple mediational analyses were conducted to identify direct and indirect paths connecting illness beliefs to psychological outcomes.Results: Controlling for disability level, significant direct and indirect relationships were observed: Beliefs on illness coherence, personal and treatment control were associated with better adjustment; emotion representations and cyclic timeline with worse adjustment; illness identity, consequences, psychological and chance/bad luck causes with mixed positive and negative outcomes. Notably, findings identified recurrent and unique pathways connecting illness beliefs to the different indicators through meaning- and problem-focused coping strategies, avoidance and social support.Conclusions: The Common Sense Model can represent a useful framework to be tested in rehabilitation programs, jointly addressing illness beliefs and coping resources for the promotion of psychological adjustment among persons with MS.IMPLICATIONS FOR REHABILITATIONBased on the Common Sense Model, the beliefs held by persons with MS about their illness are related to various aspects of psychological adjustment in multiple ways, both directly and indirectly through engagement in specific coping strategies and perception of social support.Clinicians supporting patients' adjustment may take into account that some illness beliefs were consistently associated with positive adjustment, some with poor adjustment, and some yielded mixed positive and negative results.Some ways in which coping strategies and social support connected illness beliefs to psychological adjustment were specific to the adjustment indicator under consideration including satisfaction with life, psychological well-being, mental health and depression.It may be worth testing comprehensive psychological interventions with the aim of raising awareness of one's illness beliefs, the strategies enacted in response to these beliefs, and the positive and negative relations of these processes with psychological adjustment, encompassing broad areas of individuals' lives and not only health-related issues or depression.


Asunto(s)
Ajuste Emocional , Esclerosis Múltiple , Adaptación Psicológica , Femenino , Humanos , Masculino , Percepción , Apoyo Social
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