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1.
Acta Psychiatr Scand ; 2023 Nov 06.
Article in English | MEDLINE | ID: mdl-37931907

ABSTRACT

BACKGROUND: Our study aims to understand whether depression, either in pregnancy or lifetime, affects cognitive biases (comprising the attentional focus and affective state) and mentalizing features (ability to understand children's internal mental states, thereby detecting and comprehending their behavior and intention), in maternal speech during mother-infant interaction in the first postnatal year. METHODS: We recruited 115 pregnant women (44 healthy, 46 with major depressive disorder [MDD] in pregnancy, and 25 with a history of MDD but healthy pregnancy) at 25 weeks' gestation. Three-minute videos were recorded at 8 weeks and 12 months postnatally for each dyad. Maternal speech was transcribed verbatim and coded for cognitive biases and mentalizing comments using the Parental Cognitive Attributions and Mentalization Scale (PCAMs). RESULTS: Women suffering from antenatal depression showed a decreased proportion of mentalizing comments compared with healthy women, at both 8 weeks (0.03 ± 0.01 vs. 0.07 ± 0.01, P = 0.002) and 12 months (0.02 ± 0.01 vs. 0.04 ± 0.01, P = 0.043). Moreover, compared with healthy women, both those with antenatal depression and those with a history of depression showed decreased positive affection in speech (0.13 ± 0.01 vs. 0.07 ± 0.01 and 0.08 ± 0.02, respectively P = 0.003 and P = 0.043), and made significantly fewer comments focused on their infants' experience at 8 weeks (0.67 ± 0.03 vs. 0.53 ± 0.04 and 0.49 ± 0.05, respectively P = 0.015 and P = 0.005). In linear regression models women's socioeconomic difficulties and anxiety in pregnancy contribute to these associations, while postnatal depression did not. CONCLUSIONS: Both antenatal depression and a lifetime history of depression are associated with a decreased quality of women's speech to their infants, as shown by less focus on their infant's experience, decreased positive affection, and less able to mentalize. Examining maternal speech to their infants in the early postnatal months may be particularly relevant to identify women who could benefit from strategies addressing these aspects of the interactive behavior and thus improve infant outcome in the context of depression.

2.
Health Qual Life Outcomes ; 21(1): 61, 2023 Jun 25.
Article in English | MEDLINE | ID: mdl-37357308

ABSTRACT

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.


Subject(s)
Computerized Adaptive Testing , Multiple Sclerosis , Quality of Life , Computerized Adaptive Testing/methods , Computer Simulation , Multiple Sclerosis/diagnosis , Surveys and Questionnaires , Humans , Adolescent , Adult , Middle Aged , Aged , Aged, 80 and over , Psychometrics
3.
Rehabil Psychol ; 68(3): 289-300, 2023 Aug.
Article in English | MEDLINE | ID: mdl-37199978

ABSTRACT

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).


Subject(s)
Multiple Sclerosis , Sense of Coherence , Male , Humans , Female , Adult , Cross-Sectional Studies , Adaptation, Psychological , Emotions , Caregivers/psychology , Surveys and Questionnaires
4.
Brain Behav Immun Health ; 30: 100633, 2023 Jul.
Article in English | MEDLINE | ID: mdl-37206958

ABSTRACT

Background: the different lockdown phases due to COVID-19 may have negatively impacted pregnant women's mental health. Concerning antenatal stress, most studies focused more on the effect of pandemic onset than on the impact of the following phases and restrictions. Aim: the present study aimed to assess levels of anxiety and depression in a group of Italian pregnant women during the second COVID-19 phase and possible risk factors. Method: We recruited 156 pregnant women through our Perinatal Psychology Outpatient Clinic. We divided the sample into women recruited before the pandemic (N = 88) through a face-to-face antenatal class and pregnant women recruited during the second lockdown (Covid-19 study group) (November 2020-April 2021) through the same antenatal class via Skype (N = 68). To investigate depressive and anxiety symptoms, we administered the Edinburgh Postnatal Depression Scale (EPDS) and the State and Trait Anxiety Inventory (STAI-Y) scales; women's medical history and obstetric data were collected. Findings: women belonging to the Covid-19 study group reported higher depressive and anxious levels than the pre-pandemic group. Moreover, during the second lockdown previous psychopathology and being close to childbirth were related to increased depression; a history of abortion was related to higher levels of trait anxiety instead. Conclusion: recurrent restrictive measures due to COVID-19 negatively affected the antenatal mental well-being of pregnant women, particularly worsening depressive and anxious feelings. Pregnant women during the pandemic represented a vulnerable population to be monitored more closely and timely to prevent psychological problems in the postpartum period and their consequences on the child. Keywords: anxiety, depression, pregnancy, COVID-19, mental health, lockdown.

5.
Am J Med Genet A ; 191(2): 424-436, 2023 02.
Article in English | MEDLINE | ID: mdl-36373849

ABSTRACT

Several changes in the behavioral phenotype arise with the growth of children affected by Cornelia de Lange Syndrome (CdLS) and Rubinstein-Taybi Syndrome (RSTS). However, previous research relied on a cross-sectional study design turning into age-related comparisons of different syndromic cohorts to explore age-dependent changes. We aim to outline the variating pathways of the neuropsychiatric functioning across the lifespan in CdLS and RSTS, through the setting up of a longitudinal study design. The sample included 14 patients with CdLS and 15 with RSTS. The assessments were carried out in two different timepoints. Our findings highlight that the cognitive profile of CdLS is subjected to a worsening trend with decreasing Intellectual Quotient (IQ) scores from T0 to T1, whereas RSTS shows a stable IQ over time. Patients affected by RSTS show greater improvements compared to CdLS in communication, daily living skills, social abilities, and motor skills across the lifespan. Both syndromes report an upward trend in behavioral and emotional difficulties even if CdLS exhibit a significant and major deterioration compared to individuals with RSTS. Being aware of the early dysfunctional patterns which might pave the way for later neuropsychiatric impairments is the first step for planning preventive interventions.


Subject(s)
De Lange Syndrome , Rubinstein-Taybi Syndrome , Humans , Rubinstein-Taybi Syndrome/genetics , Rubinstein-Taybi Syndrome/psychology , Longitudinal Studies , Cross-Sectional Studies , De Lange Syndrome/diagnosis , De Lange Syndrome/genetics , Phenotype
6.
Neurol Sci ; 43(3): 1903-1910, 2022 Mar.
Article in English | MEDLINE | ID: mdl-34363548

ABSTRACT

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.


Subject(s)
Multiple Sclerosis , Physicians , Happiness , Humans , Job Satisfaction , Surveys and Questionnaires
7.
J Autism Dev Disord ; 52(11): 4763-4773, 2022 Nov.
Article in English | MEDLINE | ID: mdl-34751866

ABSTRACT

Behavioural phenotype and autism-related traits of 38 patients affected by Cornelia de Lange syndrome (CdLS) were assessed using a specific neuropsychiatric protocol. Subsequently,we search for possible genotype-phenotype correlations comparing individuals with NIPBL variants and patients with negative molecular results. Firstly results showed a higher percentage of subjects with normal intellectual quotient (IQ) and borderline IQ; adaptive skills were lower than expected for age in all participants. 39.5% of the sample presented with autism spectrum disorder (ASD), NIPBL mutated individuals demonstrated a worse trend in comparison with the clinical diagnosis group. non-truncating individuals displayed no ASD and better communication abilities than truncating individuals. Findings increase our awareness of the strengths and weaknesses points in CdLS individuals.


Subject(s)
Autism Spectrum Disorder , De Lange Syndrome , Autism Spectrum Disorder/genetics , Cell Cycle Proteins/genetics , De Lange Syndrome/diagnosis , Genotype , Humans , Phenotype
8.
Health Qual Life Outcomes ; 19(1): 224, 2021 Sep 25.
Article in English | MEDLINE | ID: mdl-34563229

ABSTRACT

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.


Subject(s)
Multiple Sclerosis/psychology , Quality of Life , Surveys and Questionnaires/standards , Bayes Theorem , Factor Analysis, Statistical , Humans , Models, Statistical , Models, Theoretical , Reproducibility of Results
9.
J Clin Psychol Med Settings ; 28(1): 149-160, 2021 03.
Article in English | MEDLINE | ID: mdl-31872372

ABSTRACT

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.


Subject(s)
Multiple Sclerosis , Adaptation, Psychological , Fatigue/etiology , Humans , Multiple Sclerosis/complications , Quality of Life , Social Support , Surveys and Questionnaires
10.
Neurol Sci ; 41(7): 1881-1889, 2020 Jul.
Article in English | MEDLINE | ID: mdl-32095946

ABSTRACT

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.


Subject(s)
Multiple Sclerosis , Quality of Life , Adolescent , Adult , Aged , Aged, 80 and over , Caregivers , Female , Humans , Italy , Male , Middle Aged , Psychometrics , Reproducibility of Results , Surveys and Questionnaires , Young Adult
11.
Health Soc Care Community ; 28(1): 236-246, 2020 01.
Article in English | MEDLINE | ID: mdl-31524966

ABSTRACT

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.


Subject(s)
Caregivers/psychology , Empathy , Multiple Sclerosis/psychology , Quality of Life/psychology , Stress, Psychological/psychology , Activities of Daily Living/psychology , Adaptation, Psychological , Adult , Aged , Female , Humans , Italy , Male , Middle Aged , Multiple Sclerosis/nursing , Social Support
12.
Disabil Rehabil ; 42(26): 3780-3792, 2020 12.
Article in English | MEDLINE | ID: mdl-31056979

ABSTRACT

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.


Subject(s)
Emotional Adjustment , Multiple Sclerosis , Adaptation, Psychological , Female , Humans , Male , Perception , Social Support
13.
Qual Life Res ; 29(3): 783-791, 2020 Mar.
Article in English | MEDLINE | ID: mdl-31707695

ABSTRACT

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.


Subject(s)
Health Status , Multiple Sclerosis/psychology , Psychometrics/methods , Quality of Life/psychology , Adult , Factor Analysis, Statistical , Female , Humans , Ireland , Language , Male , Middle Aged , Surveys and Questionnaires
14.
Front Neurol ; 10: 916, 2019.
Article in English | MEDLINE | ID: mdl-31507519

ABSTRACT

Background: Few studies have investigated the experiences of patients around the conversion to secondary progressive multiple sclerosis (SPMS). ManTra is a mixed-method, co-production research project conducted in Italy and Germany to develop an intervention for newly-diagnosed SPMS patients. In previous project actions, we identified the needs and experiences of patients converting to SPMS via literature review and qualitative research which involved key stakeholders. Aims: The online patient survey aimed to assess, on a larger and independent sample of recently-diagnosed SPMS patients: (a) the characteristics associated to patient awareness of SPMS conversion; (b) the experience of conversion; (c) importance and prioritization of the needs previously identified. Methods: Participants were consenting adults with SPMS since ≤5 years. The survey consisted of three sections: on general and clinical characteristics; on experience of SPMS diagnosis disclosure (aware participants only); and on importance and prioritization of 33 pre-specified needs. Results: Of 215 participants, those aware of their SPMS diagnosis were 57% in Italy vs. 77% in Germany (p = 0.004). In both countries, over 80% of aware participants received a SPMS diagnosis from the neurologist; satisfaction with SPMS disclosure was moderate to high. Nevertheless, 28-35% obtained second opinions, and 48-56% reported they did not receive any information on SPMS. Participants actively seeking further information were 63% in Germany vs. 31% in Italy (p < 0.001). Variables independently associated to patient awareness were geographic area (odds ratio, OR 0.32, 95% CI 0.13-0.78 for Central Italy; OR 0.21, 95% CI 0.08-0.58 for Southern Italy [vs. Germany]) and activity limitations (OR 7.80, 95% CI 1.47-41.37 for dependent vs. autonomous patients). All pre-specified needs were scored a lot or extremely important, and two prioritized needs were shared by Italian and German patients: "physiotherapy" and "active patient care involvement." The other two differed across countries: "an individualized health care plan" and "information on social rights and policies" in Italy, and "psychological support" and "cognitive rehabilitation" in Germany. Conclusions: Around 40% of SPMS patients were not aware of their disease form indicating a need to improve patient-physician communication. Physiotherapy and active patient care involvement were prioritized in both countries.

15.
Front Psychol ; 8: 2216, 2017.
Article in English | MEDLINE | ID: mdl-29326635

ABSTRACT

The experience of persons with multiple sclerosis (MS) and their caregivers is usually investigated in terms of emotional distress and health-related quality of life, while well-being indicators remain largely underexplored. In addition, findings are often interpreted from the clinical perspective, neglecting socio-cultural aspects that may crucially contribute to individuals' functioning. At the methodological level, most studies rely on scaled instruments, not allowing participants to freely express their needs and resources. Based on the bio-psycho-social perspective endorsed by the International Classification of Functioning, well-being indicators were investigated among 62 persons with MS (PwMS), their 62 caregivers and two control groups, matched by age and gender. Participants completed the Positive Affect Negative Affect Schedule (PANAS), the Satisfaction with Life Scale (SWLS), and the Eudaimonic and Hedonic Happiness Investigation instrument (EHHI). EHHI provides information on participants' happiness, goals and meanings through scaled and open-ended questions, contextualized within major life domains. No relevant differences emerged among PwMS and caregivers, compared with the respective control groups, as concerns life domains associated with happiness, goals and meaning. Participants across groups prominently mentioned family, highlighting its intrinsic value and its relevance as a sharing context; health did not represent a major theme for PwMS; community, society and religion/spirituality issues were substantially neglected by all participants. PwMS and caregivers reported lower levels of positive affect than their control groups, while no substantial differences emerged for negative affect, happiness and meaningfulness levels in life and across most domains. Results suggest that the experience of MS is associated with well-being in relevant life domains, such as family and close relationships. Although PwMS and caregivers identified a lower number of goals and meaning-related opportunities compared to control groups, they showed a positive adjustment to disease through the development of personal and family resources. These assets are often undervalued by health professionals and social institutions, while they could be fruitfully exploited through the active involvement of PwMS and their families as expert and exemplary informants in initiatives aimed at promoting the well-being of individuals and communities.

16.
Front Behav Neurosci ; 10: 28, 2016.
Article in English | MEDLINE | ID: mdl-26941630

ABSTRACT

Cognitive rehabilitation in multiple sclerosis (MS) has been reported to induce neuropsychological improvements, but the persistence of these effects has been scarcely investigated over long follow ups. Here, the results of a multicenter randomized clinical trial are reported, in which the efficacy of 15 week domain specific cognitive training was evaluated at 2 years follow up in 41 patients. Included patients were randomly assigned either to domain specific cognitive rehabilitation, or to aspecific psychological intervention. Patients who still resulted to be cognitively impaired at 1 year follow up were resubmitted to the same treatment, whereas the recovered ones were not. Neuropsychological tests and functional scales were administered at 2 years follow up to all the patients. Results revealed that both at 1 and at 2 years follow up more patients in the aspecific group (18/19, 94% and 13/17, 76% respectively) than in the specific group (11/22, 50% and 5/15, 33% respectively) resulted to be cognitively impaired. Furthermore patients belonging to the specific group showed significantly less impaired tests compared with the aspecific group ones (p = 0.02) and a significant amelioration in the majority of the tests. On the contrary patients in the aspecific group did not change. The specific group subjects also perceived a subjective improvement in their cognitive performance, while the aspecific group patients did not. These results showed that short time domain specific cognitive rehabilitation is a useful treatment for patients with MS, shows very long lasting effects, compared to aspecific psychological interventions. Also subjective cognitive amelioration was found in patients submitted to domain specific treatment after 2 years.

17.
Front Neurol ; 5: 278, 2014.
Article in English | MEDLINE | ID: mdl-25628596

ABSTRACT

BACKGROUND: Specific cognitive rehabilitation in multiple sclerosis (MS) resulted to be effective compared to no treatment. So far the possible role of an aspecific psychological intervention on cognition has not been investigated. OBJECTIVE: The aim of the SMICT RCT was to compare the efficacy of a specific cognitive training with an aspecific psychological intervention in relapsing-remitting MS patients. METHODS: From a sample of 150 patients, with the same disability and immunomodulatory therapy, submitted to neuropsychological examination, 45 impaired in at least one test were included and 41 randomized to have either a specific cognitive training for the impaired function (22) or to an aspecific psychological intervention (19) for 4 months, starting after baseline examination. Neuropsychological tests and functional scales were administered at baseline and 1 year later. RESULTS: After 1 year, the mean number of pathological tests was significantly lower in the specific treatment group, compared to the aspecific group. Memory and attention/speeded information processing functions were mostly improved. Depression and quality of life were not different between groups at follow up. CONCLUSION: Our study demonstrates that an intensive and domain specific cognitive approach results to be more effective than aspecific psychological intervention in patients with MS.

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