scholarly journals Experience of an information aid for newly diagnosed multiple sclerosis patients: a qualitative study on the SIMS-Trial

2011 ◽  
Vol 17 (1) ◽  
pp. 36-48 ◽  
Author(s):  
Claudia Borreani ◽  
Andrea Giordano ◽  
Monica Falautano ◽  
Alessandra Lugaresi ◽  
Vittorio Martinelli ◽  
...  
2006 ◽  
Vol 245 (1-2) ◽  
pp. 77-85 ◽  
Author(s):  
Agnete Jønsson ◽  
Jente Andresen ◽  
Lars Storr ◽  
Thomas Tscherning ◽  
Per Soelberg Sørensen ◽  
...  

2004 ◽  
Vol 10 (6) ◽  
pp. 679-685 ◽  
Author(s):  
Richard A Smith ◽  
James E Berg ◽  
Laura E Pope ◽  
Janice D Callahan ◽  
Daniel Wynn ◽  
...  

Pseudobulbar affect (PBA) or pathological laughing and crying (PLC) is a disorder of affect that occurs in about 10% of multiple sclerosis (MS) patients. The objective of this study was to validate the CNS Emotional Lability Scale (CNS-LS) in MS patients and to correlate the results with the frequency and intensity of episodes of PLC. Physicians at seven private practice referral centers in the United States made a diagnosis concerning PLC based on patient interviews. Clinical coordinators separately administered the CNS-LS, a self-report measure of PLC with seven questions, to MS patients, including patients known to exhibit PLC, patients thought to be free of PLC, and newly diagnosed patients where PLC status was unknown, and the physician was blinded as to the results. A receiver operating characteristic (ROC) curve analysis was performed to define a cut-off best correlating with the physician’s diagnosis. Of 90 MS patients selected to complete the survey, 50 were physician diagnosed with PLC; 40 were without PLC, and 15 of these 90 patients were newly diagnosed with MS (B-6 months). Scores of 17 or higher corresponded to a sensitivity of 0.94 and a specificity of 0.83 (LR -/5.5, LR -/0.07); 89% of patients were correctly diagnosed. The area under the ROC curve was 0.95. Symptoms were greater in patients diagnosed as PLC than in non-PLC patients as evidenced by mean number of episodes/week, number of days/week with episodes, duration of an episode and total time in an episode. Similar results were observed if patients were classified as PLC or non-PLC according to CNS-LS score]-17, suggesting that the CNS-LS is a valid measure for the assessment of PLC in MS patients and could be a useful instrument for clinical and research purposes.


2010 ◽  
Vol 16 (11) ◽  
pp. 1393-1405 ◽  
Author(s):  
A. Solari ◽  
V Martinelli ◽  
M Trojano ◽  
A Lugaresi ◽  
F Granella ◽  
...  

Background: Patients report information deficits in the period surrounding diagnosis of multiple sclerosis (MS). We assessed the effectiveness of an add-on information aid for newly diagnosed MS patients. Methods: We randomly assigned 120 newly diagnosed MS patients from five Italian centres to diagnosis disclosure (current practice at the centre) or current practice plus information aid (ISRCTN81072971). The information aid consisted of a personal interview with a physician using a navigable compact disc and a take-home booklet. The primary composite endpoint was score in the highest tertile of MS knowledge and satisfaction with care questionnaires. Other endpoints were safety; treatment adherence; extra contacts/consultations; switching of care centre; and changes in Hospital Anxiety and Depression Scale and Control Preference Scale scores. Results: At 1 month, 30/60 intervention and 8/60 control patients achieved the primary endpoint (odds ratio [OR] 6.5, 95% CI 2.6—16.0; p < 0.001; number needed to treat [NNT] 3). Figures at 6 months were 26/60 intervention and 11/60 control patients (OR 3.4, 95% CI 1.5—7.8; p = 0.04; NNT 4). There were no adverse events. No significant treatment effects were seen on secondary outcomes. Conclusion: The information aid was safe and significantly associated with attainment of the primary outcome at 1 and 6 months.


1996 ◽  
Vol 93 (22) ◽  
pp. 12461-12466 ◽  
Author(s):  
P. Musette ◽  
D. Bequet ◽  
C. Delarbre ◽  
G. Gachelin ◽  
P. Kourilsky ◽  
...  

2021 ◽  
pp. 135245852110325
Author(s):  
Marco Pitteri ◽  
Roberta Magliozzi ◽  
Richard Nicholas ◽  
Stefano Ziccardi ◽  
Anna Isabella Pisani ◽  
...  

Background: The cerebrospinal fluid (CSF) molecular milieu is a marker of diffuse intrathecal inflammation in the meninges that, in turn, targets the grey matter (GM) in multiple sclerosis (MS). Cognitive impairment (CI) is associated with brain damage in MS and is often present early in people with MS (pwMS). Objective: To investigate whether a specific CSF inflammatory profile is associated with different degrees of CI in newly diagnosed pwMS. Methods: Sixty-nine pwMS and 43 healthy controls (HCs) underwent neuropsychological testing. The presence and levels of 57 inflammatory mediators in the CSF were assessed. Results: Apparently cognitively normal (ACN) pwMS had impaired executive functioning compared to HCs but performed better than pwMS with mild and severe CI (mCI and sCI) in all tests. CSF mediators involving innate immunity and immune activation and recruitment, differentiate ACN from pwMS with mCI, while CSF mediators related to B- and T-cell immunity and chemotaxis differentiate both ACN and mCI from those with sCI. CXCL13 was the only molecule that differentiated sCI from mCI pwMS. Conclusion: Specific CSF molecular patterns, reflecting the involvement of both innate and adaptive immune responses, are associated with the severity of CI in newly diagnosed pwMS.


2018 ◽  
Vol 52 (3) ◽  
pp. 139-145 ◽  
Author(s):  
Zofia Radikova ◽  
Adela Penesova ◽  
Miroslav Vlcek ◽  
Andrea Havranova ◽  
Monika Sivakova ◽  
...  

AbstractObjectives. Increased metabolic and cardiovascular morbidity has been reported in multiple sclerosis (MS) patients. Previously, we have found decreased insulin sensitivity and hyperinsulinemia in a group of newly diagnosed MS patients. We hypothesize that these features may be associated with an altered lipid profile and low, intermediate, or high density lipoprotein (LDL, IDL, HDL) subclasses accelerating atherosclerosis and thus contributing to the cardiovascular risk increase in these patients.Subjects and methods. In a group of 19 newly diagnosed untreated MS patients with previously found hyperinsulinemia and insulin resistance and a matched group of 19 healthy controls, the lipoprotein subclasses profile was determined. Polyacrylamide gel electrophoresis was used to separate and measure the LDL (large LDL and small dense LDL), HDL (large, intermediate and small), and IDL (A, B and C) subclasses with the Lipoprint© System (Quantimetrix Corporation, Redondo Beach, CA, USA).Results. No difference was found either in the conventional lipid or lipoprotein subclasses profile between the MS patients and healthy controls. We found an inverse association between the level of IDL-B with fasting insulin (r=–0.504, p=0.032), the insulin resistance estimated by homeo-static model assessment – insulin resistance (HOMA-IR) (r=–0.498, p=0.035), insulin response expressed as area under the curve (AUC; r=–0.519, p=0.027), and area above the baseline (AAB; r=–0.476, p=0.045) and positive association with insulin sensitivity estimated by insulin sensitivity index (ISI) Matsuda (r=0.470, 0.048) in MS patients, but not in healthy controls suggesting the first signs in lipoprotein subclasses profile change.Conclusions. Our data indicate that changes in lipoprotein profile and subclasses are preceded by insulin resistance and hyperinsulinemia in patients with newly diagnosed MS.


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