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OBJECTIVES: People with multiple sclerosis (pwMS) often have magnetic resonance imaging (MRI) examinations. While MRI can help guide MS management, it may be a source of anxiety for pwMS. We aimed to develop and validate a questionnaire on the "EMotions and Attitudes towards MRI" (MRI-EMA). MATERIAL AND METHODS: The questionnaire was developed, tested in two samples of pwMS and validated in a sample of n = 457 pwMS using exploratory (EFA) and confirmatory factor analysis (CFA). RESULTS: EFA revealed four factors underlying the questionnaire: fear of MRI scan, fear of MRI results, feeling of control over the disease and feeling of competence in the patient-physician encounter. CFA confirmed the model fit. Receiving the MRI results, but not undergoing the procedure was associated with anxiety. Seeing MRI results gave participants a feeling of control over the disease. Only 50% felt competent to discuss MRI findings with their physician. Fear of MRI results was especially high and feeling of competence low in participants with a short disease duration and little MRI experience. CONCLUSION: PwMS do not feel competent when discussing the role, MRI plays in their care. Receiving MRI results caused anxiety and provides some pwMS with a-perhaps false-feeling of control over the disease. The MRI-EMA constitutes a new tool for the assessments of pwMS' feelings towards MRI, that can be applied in future research and clinical settings.
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Emoções , Imageamento por Ressonância Magnética/psicologia , Esclerose Múltipla/diagnóstico por imagem , Esclerose Múltipla/psicologia , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
The following study considers correlates of the identification with the origin and host culture of German individuals with a Turkish migrant background. It examines how these two factors mediate the relationship between perceived discrimination, emotion regulation or psychological stress, and aggressive tendencies as the major dependent variable. For this purpose, the data of 229 people with Turkish migration background living in Germany was collected through an online survey. Findings depict that the identification with the Turkish (origin) and German (host) culture mediate the relationship between perceived discrimination and emotion regulation. The relationship between perceived discrimination and psychological stress is mediated by the identification with the German culture. The analysis shows that perceived discrimination is associated with a reduced identification with the German culture and with a high identification with the Turkish culture. Emotion regulation abilities are negatively related to perceived discrimination and identification with the Turkish culture. In contrary, the psychological stress level is positively related to perceived discrimination. The preparedness for aggressive behavior is also associated positively by psychological stress and negatively by emotion regulation abilities. The results are discussed against the background of the specific migration history and living conditions of Turkish immigrants in Germany.
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Fatigue in persons with multiple sclerosis (PwMS) is severely disabling. However, the underlying mechanisms remain incompletely understood. Recent research suggests a link to early childhood adversities and psychological trait variables. In line with these studies, this paper took a psychodynamic perspective on MS-fatigue. It was hypothesized that fatigue could represent a manifestation of maladaptive coping with intense emotions. The schema therapeutic mode model served as a theoretical and empirically validated framework, linking psychodynamic theory and empirical research methods. The study was based on a data set of N = 571 PwMS that has also served as the basis for another publication. Data was collected online. The Schema Mode Inventory was used to quantify regulatory strategies to cope with emotionally stressful experiences. In addition, depressive symptoms (Beck's Depression Inventory - FastScreen), physical disability (Patient Determined Disease Steps), alexithymia (Toronto Alexithymia Scale-26), adverse childhood experiences (Childhood Trauma Questionnaire), and self-reported fatigue (Fatigue Scale for Motor and Cognitive Functions) were assessed. Latent profile analysis revealed three distinct groups of PwMS, based on their coping mode profiles: (1) PwMS with low maladaptive coping, (2) PwMS with avoidant/submissive coping styles, and (3) PwMS with avoidant/overcompensatory coping styles. Multivariate comparisons showed no significant difference in physical disability across the three groups. However, heightened levels of self-reported fatigue and depression symptoms occurred in PwMS with maladaptive coping styles. A path model uncovered that self-reported fatigue was robustly related to physical disability (ß = 0.33) and detached/avoidant coping (Detached Protector; ß = 0.34). There was no specific relation between any of the maladaptive coping modes and depression symptoms. Detached/avoidant coping was in turn predicted by childhood emotional abuse and neglect. The results indicate that childhood adversity and detached/avoidant coping styles may be associated with variability in MS-fatigue severity: PwMS that resort to detached/avoidant coping in response to negative emotions also tend to report heightened levels of fatigue, although they do not differ in their perceived disability from PwMS with low levels of fatigue and maladaptive coping. A link between MS-fatigue and the psychodynamic traumatic conversion model is discussed. The implications of these findings for therapeutic interventions require further study.
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OBJECTIVES: To evaluate patient information materials on confidence intervals (CIs) in multiple sclerosis to be used with patient decision aids. METHODS: Web-based randomised controlled parallel group trial with four study arms. Participants were equally allocated to one of three versions of audio-visual patient information or to a standard written information (arm IV). In the short version (arm III), CIs were explained without using an example, in the other two versions examples were used (arm I and arm II). The examples are based on an apple farmer who wants to estimate the average weight of his apples (arm I) and to test a treatment against worms (arm II). Primary endpoint was comprehension of CIs, assessed with a six-item multiple-choice questionnaire. RESULTS: 855 of 1068 (80 %) randomised participants completed the survey (71 % arm I, 73 % arm II, 87 % arm III, 90 % arm IV). The median of correctly answered questions on CIs was 4 out of 6 questions in arms I and II and 5 out of 6 questions in arm III. Compared to the standard information (arm IV), all the other arms scored better on the comprehension questionnaire (ANOVA, p ≤ 0.003). CONCLUSIONS: Information about CIs can be presented comprehensibly. High scores and a high rate of completers indicate that the short version is the favourable one. PRACTICE IMPLICATIONS: Information materials on CIs should be used alongside absolute risk reductions in patient decision aids to enhance the interpretation of study results.
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Esclerose Múltipla , Cocos , Compreensão , Intervalos de Confiança , Humanos , Internet , Esclerose Múltipla/terapiaRESUMO
BACKGROUND: Treatment adherence is fundamental in multiple sclerosis (MS) management. Adherence rates vary significantly between studies, ranging from 30% to almost 90%, depending on assessment method and medication type. This study aimed to identify patient-related categories associated with treatment modification or discontinuation in people with MS receiving either first- or second-line treatment. METHODS: Semistructured interviews were performed with 23 people with MS: 11 receiving first-line treatment and 12 receiving second-line treatment. Medication history, experiences with previous medications, decision-making processes regarding immunotherapy, adherence behavior, and reasons for adherence/nonadherence were explored using open-ended questions. Qualitative content analysis was performed using a combined deductive-inductive approach in building a coding frame. Differences in coding frequencies were compared between the two groups and analyzed quantitatively. Cohen's kappas of 0.76 for people with MS receiving first-line treatment and 0.64 for the second-line sample were achieved between the two coders. RESULTS: One key reason for nonadherence reported by first-line-treated people with MS was burdensome side effects, and for adherence was belief in medication effectiveness. In people with MS receiving second-line treatment, lack of perceived medication effectiveness was a key category related to changes in or discontinuation of immunotherapy. Reasons for adherence were positive illness beliefs/perceptions and belief in highly active disease. Intentional nonadherence was a major issue for first-line treatment and less relevant for second-line treatment. CONCLUSIONS: These results indicate specific differences in factors mitigating adherence in people with MS receiving first- and second-line treatment.
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BACKGROUND: Immune treatments of multiple sclerosis (MS) can be classified in first-line and second-line approaches. While in both treatment efficacy is often not easy to assess in the short-term, treatment and illness beliefs may differ in first-line and second-line treated patients. The current study aimed to assess differential beliefs about medicine and illness perception between these groups based on the hypothesis that they are closely connected to adherence behaviour. METHODS: An online survey through the website of the German MS Society was performed investigating beliefs about immune treatments as well as the patients' illness perceptions with validated questionnaires. Demographic factors, disability and self-reported adherence rates were studied as moderator variables. RESULTS: In total, 630 patients participated. Data of 433 first-line treated and 192 second-line treated patients with MS (PwMS) were analysed. Necessity beliefs and also concerns beliefs were significantly higher in second-line treated PwMS (MANCOVA p =.001 and p =.006) and generally in patients with higher disability, while illness perception did not differ between groups. Self-assessed adherence rates were around 70% for oral treatments and injectables irrespective of first-line or second-line. Nonadherence was below 5% for infusion treatments. However, most patients reported only single omissions. CONCLUSION: The current study reveals differential behavioural attitudes between first-line versus second-line-treated PwMS. However, follow-up studies are needed to further unravel the relationship between behavioural attitudes and treatment adherence.
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Conhecimentos, Atitudes e Prática em Saúde , Fatores Imunológicos/uso terapêutico , Adesão à Medicação/estatística & dados numéricos , Esclerose Múltipla/tratamento farmacológico , Adulto , Feminino , Humanos , Fatores Imunológicos/efeitos adversos , Fatores Imunológicos/classificação , Masculino , Pessoa de Meia-IdadeRESUMO
Fatigue is a common and disabling symptom in patients with Multiple Sclerosis (PwMS). Its pathogenesis, however, is still not fully understood. Potential psychological roots, in particular, have received little attention to date. The present study examined the association of childhood adversities, specific trait characteristics, and MS disease characteristics with fatigue symptoms utilizing path analysis. Five hundred and seventy-one PwMS participated in an online survey. Standardized psychometric tools were applied. The Childhood Trauma Questionnaire (CTQ) served to assess childhood adversities. Trait variables were alexithymia (Toronto Alexithymia Scale; TAS-26) and early maladaptive schemas (Young Schema Questionnaire; YSQ). Current pathology comprised depression (Beck's Depression Inventory FastScreen; BDI-FS) and anxiety symptoms (State-Trait Anxiety Inventory; STAI-state), as well as physical disability (Patient determined Disease Steps; PDDS). The Fatigue Scale for Motor and Cognitive Functions (FSMC) was the primary outcome variable measuring fatigue. PwMS displayed high levels of fatigue and depression (mean FSMC score: 72; mean BDI-II score: 18). The final path model revealed that CTQ emotional neglect and emotional abuse remained as the only significant childhood adversity variables associated with fatigue. There were differential associations for the trait variables and current pathology: TAS-26, the YSQ domain impaired autonomy and performance, as well as all current pathology measures had direct effects on fatigue symptoms, accounting for 28.2% of the FSMC variance. Bayesian estimation also revealed indirect effects from the two CTQ subscales on FSMC. The final model fitted the data well, also after a cross-validation check and after replacing the FSMC with the Chalder Fatigue Questionnaire (CFQ). This study suggests an association psychological factors on fatigue in Multiple Sclerosis. Childhood adversities, as well as specific trait characteristics, seem to be associated with current pathology and fatigue symptoms. The article discusses potential implications and limitations.
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Fatigue is among the most disabling symptoms in patients with multiple sclerosis (PwMS). The common distinction between cognitive and motor fatigue is typically incorporated in self-rating instruments, such as the Chalder Fatigue Questionnaire (CFQ), the Fatigue Scale for Motor and Cognitive Functions (FSMC) or the Modified Fatigue Impact Scale (MFIS). The present study investigated the factor structure of the CFQ, the FSMC and the MFIS utilizing exploratory (EFA) and confirmatory factor analysis (CFA) as well as exploratory structural equation modeling (ESEM). Data of 1.403 PwMS were analyzed, utilizing four samples. The first sample (N = 605) was assessed online and split into two stratified halves to perform EFA, CFA, and ESEM on the CFQ and FSMC. The second sample (N = 293) was another online sample. It served to calculate CFA and ESEM on the CFQ and FSMC. The third sample was gathered in a clinical setting (N = 196) and analyzed by applying CFA and ESEM to the FSMC. The fourth sample (N = 309) was assessed in a clinical setting and allowed to run a CFA and ESEM on the MFIS. Proposed factor structures of all questionnaires were largely confirmed in EFA. However, none of the calculated CFAs and ESEMs could verify the proposed factor structures of the three measures, even with oblique rotation techniques. The findings might have implications for future research into the pathophysiological basis of MS-related fatigue and could affect the suitability of such measures as outcomes for treatment trials, presumably targeting specific sub-components of fatigue.