Risk knowledge of people with relapsing-remitting multiple sclerosis:Results of an international survey

Background Adequate disease and treatment-related risk knowledge of people with Multiple Sclerosis (pwMS) is a prerequisite for informed choices in medical encounters. Previous work showed that MS risk knowledge is low among pwMS and role preferences are different in Italy and Germany. Objective We investigated the level of risk knowledge and role preferences in 8 countries and assessed putative variables associated with risk knowledge. Methods An online-survey was performed based on the Risk knowledge questionnaire for people with relapsing-remitting MS (RIKNO 2.0), the electronic Control Preference Scale (eCPS), and other patient questionnaires. Inclusion criteria of participants were: (1) age 18 years, (2) a diagnosis of relapsing-remitting MS (RRMS), (3) being in a decision making process for a disease modifying drug. Results Of 1939 participants from Germany, Italy, the Netherlands, Serbia, Spain and Turkey, 986 (51%) (mean age 38.6 years [range 18–67], 77% women, 7.8 years of disease duration) completed the RIKNO 2.0, with a mean of 41% correct answers. There were less than 50 participants in the UK and Estonia and data were not analysed. Risk knowledge differed across countries (p &lt; 0.001). Variables significantly associated with higher risk knowledge were higher education (p &lt; 0.001), previous experience with disease modifying drugs (p = 0.001), correct answer to a medical data interpretation question (p &lt; 0.001), while higher fear for wheelchair dependency was negatively associated to risk knowledge (p = 0.001). Conclusion MS risk knowledge was overall low and differed across participating countries. These data indicate that information is an unmet need of most pwMS.</p

Integration of Clinical Examination, Self-Report, and Hair Ethyl Glucuronide Analysis for Evaluation of Patients With Alcoholic Liver Disease Prior to Liver Transplantation

Context: A large proportion of liver transplants (LTXs) are performed due to alcoholic liver disease (ALD) in the final stage of organ insufficiency. In order to list patients for LTX, transplant centers commonly require 6 months abstinence from alcohol. However, significant differences have been reported between alcohol intake as indicated by self-report and biochemical markers of alcohol. Objective: In the present study, the usefulness of ethyl glucuronide analysis in hair (hETG) was examined during the evaluation procedure before listing patients with ALD for an LTX. Design: Cross-sectional survey. Setting: Psychosomatic evaluation. Patients: Seventy patients with ALD prior to listing for an LTX. Interventions: According to clinical assessment before listing patients with ALD (n = 233) for an LTX, hETG analysis was only performed in the patients who were assumed to deny or underreport their alcohol consumption (n = 70). Main Outcome Measures: The analysis of hETG by liquid chromatography–mass spectrometry, clinical interview. Results: By hETG analyses, 27 (38.6%) of the 70 patients tested positive for ongoing alcohol consumption. Conclusions: Selective use of hETG based on the clinical interview rather than widespread screening is a possible way to detect excessive alcohol consumption in patients with ALD in the transplant setting. The primary evaluation of a patient’s situation in its entirety should remain the superordinate standard procedure. An interdisciplinary approach to transplant candidates with an ALD is asked for

Resilience and quality of life in 161 living kidney donors before nephrectomy and in the aftermath of donation: a naturalistic single center study

Background: Due to the shortage of cadaveric organs, living kidney donation has begun to serve as the most crucial organ pool. Transplant centers have a legitimate interest in expanding the pool of donors. A psychosocial evaluation is established in transplantation centers to prevent donors from possible emotional harm in the aftermath of donation. We explored if the resilience questionnaire is an appropriate measure of the mental stability. To procedures of psychosocial evaluation and to optimize donor recruitment, we present our evaluation protocol and analyze the causes of exclusion from donation. Method: In a naturalistic design, we compared resilience and quality of life in eligible and excluded donors at the time point of donation. Potential living kidney donors (N = 161) participated in the obligatory psychosomatic evaluation. Quality of life (World Health Organization Quality of Life, WHOQOL-Bref) and resilience (Resilience Scale, RS-12) were measured. Three months after nephrectomy donors quality of life was screened in a follow-up. Results: In the evaluation interview donors were classified as eligible (n = 142) or excluded (n = 12). Nonrelated donors (n = 3) were excluded from donation significantly more often (p < .011). Eligible donors (M = 78.42, SD = 10.19) had higher values for resilience than excluded donors (M = 72.7, SD = 8.18, p < .04), who showed values comparable to the norm. In all domains of quality of life, eligible donors had significantly higher values than healthy normals (p < .001). After donation health-related quality of life decreased, but was comparable to the norm. A regression analysis showed that resilience was a significant predictor for all dimensions of quality of life before donation (R-2 = 10.2-24.6 %). Post-donation quality of life was significantly correlated with pre-donation resilience scores (p < .05). Conclusions: The resilience score predicts high mental quality of life before and after donation. Therefor it can be implemented as a self-rating instrument to further objectify donor's mental stability. Despite the stressful life event of donation, donor candidates presented high resilience and high levels of quality of life. Therefor our findings support health care providers' intentions to improve living donation. In the group of excluded donors nonrelated persons were overrepresented. Guidelines for the admission of nonrelated donors are currently unclear and need to be optimized

Posttraumatic Stress Disorder, Quality of Life, and the Subjective Experience in Liver Transplant Recipients

Objective: A high prevalence of posttraumatic stress disorder (PTSD) symptoms among transplant recipients has been associated with a low adherence to treatment and poor survival. It is crucial to detect and prevent the development of posttraumatic stress in transplant settings. Methods: We examined the prevalence of posttraumatic stress symptoms in 3 liver transplant recipients by means of the Essen Trauma Inventory (ETI), a self-report questionnaire. The Short Form-36 was used to assess the perceived health-related quality of life. Patients were asked to indicate the most traumatic events within the context of the liver transplantation procedure. Results: Five patients (4.9%) fulfilled the criteria for PTSD related to liver disease or transplantation (ETI score greater than 27). In these patients, diagnosis was confirmed by a structured clinical interview. Fourteen (13.6%) patients had a partial PTSD with the ETI score less than 27 and greater than 16. Posttraumatic stress symptoms were significantly associated with perceived poor physical and mental health-related quality of life. Patients reported that the physicians’ disclosure of diagnosis was experienced as traumatic, followed by treatment in an intensive care unit and the liver transplantation itself. Conclusions: The ETI resulted in prevalence rates for PTSD comparable to previous studies in liver transplantation settings. Medical professionals requested additional training in how to deliver severe diagnoses to patients

Dysphagia in Alzheimer's disease

WOS: 000382713000003PubMed ID: 26924307Objective. - To investigate electrophysiological parameters of swallowing in all stages of Alzheimer's disease. Methods. - Forty Alzheimer's disease patients, 20 age-matched normal controls and 20 young normal controls were included. Dysphagia limit (DL) and sequential water swallowing (SWS) tests were performed. Cardiac rhythm, respiration and sympathetic skin responses were concomitantly recorded. Results. - Dysphagia was found in 30/40 (75%) of Alzheimer's disease patients. Mean volume at the DL test was significantly reduced (16.5 +/- 1.0 mL) in the Alzheimer's disease group. Swallowing and apnea times in the SWS test were significantly prolonged in elderly controls, but even longer in Alzheimer's disease patients. Conclusions. - Alzheimer's disease patients had electrophysiological features of dysphagia, even in the early period of disease. The cortical involvement and severity of cognitive disorder can increase swallowing problems, but subclinical signs of dysphagia may be observed even in patients with mild or moderate Alzheimer's disease. (C) 2016 Elsevier Masson SAS. All rights reserved

Anxiety, Posttraumatic Stress, and Fear of Cancer Progression in Patients with Melanoma in Cancer Aftercare

Background: Several studies have described mental distress and anxiety in patients with melanoma. The findings of these studies varied from patients with a quality of life similar to the general population and those with increased mental distress. In the present study, we investigated anxiety, posttraumatic stress, and fear of cancer progression to gain a detailed picture of the burdens of these patients. Patients and Methods: 70 patients with malignant melanoma who attended cancer aftercare were surveyed using the psychometric instruments Hospital Anxiety and Depression Scale (HADS), Posttraumatic Symptom Scale (PTSS-10), and Fear of Progression Questionnaire (FoP-Q). The questionnaires were evaluated and an analysis of the single items carried out. Results: The scores for the three anxiety parameters were low, but 7% of the patients presented an increased HADS score, and 17% an increased PTSS-10 value. An analysis of the items showed that patients feared physical disabilities more than mental distress or lack of social support. Conclusion: Most of the patients perceived themselves as stable, and relied on the assistance of their families. However, a small group of patients suffered from clinically relevant anxiety; these patients should be given the support indicated for their specific distress.Hintergrund: Es wurde wiederholt festgestellt, dass Melanompatienten unter psychischen Belastungen und Ängsten leiden. Allerdings weist die Studienlage widersprüchliche Ergebnisse auf. Um ein detaillierteres Bild von den Sorgen der Patienten zu erhalten, wurden in dieser Studie ihre Ängstlichkeit, posttraumatische Belastung und Progredienzangst genauer untersucht. Patienten und Methoden: 70 Patienten mit einem malignem Melanom, die zur ambulanten Nachsorge erschienen, beantworteten die Fragebögen HADS, PTSS-10 und PA-F. Diese wurden ausgewertet und zudem eine Analyse der einzelnen Items durchgeführt. Ergebnisse: Die Ausprägung der 3 Angstparameter fiel insgesamt gering aus, trotzdem wiesen 7% der Patienten auffällige HADS-Werte und 17% auffällige PTSS-10-Werte auf. Die Itemanalyse ergab, dass eher die Angst vor körperlichen Folgen als die vor psychischen Belastungen durch mangelnde soziale Unterstützung vorherrschte. Schlussfolgerungen: Die Patienten erlebten sich größtenteils stabil und vertrauten auf die Hilfe durch ihre Familien. Dennoch leidet eine kleine Gruppe von Patienten unter klinisch relevanten Ängsten. Dieser muss unter Berücksichtigung ihrer spezifischen Belastungen gezielte Unterstützung zuteilwerden

Blood Pressure Changes in Migraine Patients before, during and after Migraine Attacks

WOS: 000296461800006PubMed ID: 20158621Migraine attacks are characterized by headaches associated with neurological, gastrointestinal, and autonomic symptoms. A relationship between migraine and hypertension or hypotension is controversial. In this study, we aimed to determine if blood pressure changes were related to migraine attacks. From the outpatient clinic of our neurology department, 62 normotensive migraine patients with and without aura were chosen for study in accordance with the International Headache Society 2004 criteria. A questionnaire including general and specific questions was given to the patients to be filled out during 6 consequent migraine attacks. The patients received a fully automatic digital brachial upper arm sphygmomanometer (Omron M 4-1) to measure the changes in their blood pressure during attacks. The patients were asked to record their blood pressure changes 3 times: (1) just before or very early, (2) during (when headache peaks), and (3) 1 hour after the attack. Twenty-three of the 62 patients (57 women, 5 men) had migraine with aura (22 women and 1 man), and 39 of them did not have aura (35 women and 4 men). There was no statistically significant difference between systolic and diastolic values obtained before or very early, during the peak level, and 1 hour after the end of the attacks (P > 0.05). Although diastolic hypotensive values were not different statistically between groups, when all the patients were considered, diastolic hypotensive values were detected in a considerable number of patients (a total of 115 measurements). In this normotensive migrainous population, we observed that diastolic hypotension before or very early, during, and after migraine attack was the most significant result (5.1%). Although it was not statistically significant, the total number of hypotensive values was remarkable.Turkish Academy of SciencesTurkish Academy of Sciences [YSA/TUBA-GEBIP/2002-1-1]This work was supported by the Turkish Academy of Sciences, in the framework of the Young Scientist Award Program (YSA/TUBA-GEBIP/2002-1-1)

Electrophysiological Evaluation of Dysphagia in the Mild or Moderate Patients with Multiple Sclerosis: A Concept of Subclinical Dysphagia

WOS: 000356254900003PubMed ID: 25687968Swallowing mechanism and neurogenic dysphagia in MS have been rarely studied by electromyographical (EMG) methods. This study aims to evaluate the presence of subclinical dysphagia in patients with mild multiple sclerosis (MS) using electrophysiological methods. A prospective study of 51 patients with relapsing remitting multiple sclerosis and 18 age-matched healthy adults was investigated. We used electromyography to measure the activity of the submental muscles during swallowing. Electrophysiological recordings of patients were obtained during relapse, after relapse, and at any time in remission period. Clinical dysphagia was found in 12 % of MS patients, while electrophysiological swallowing abnormalities were encountered in 33 % of patients. Subclinical dysphagia was determined in 35 % of patients during an MS relapse, in 20 % of patients after a relapse, and in 25 % of all 51 patients in the remission period based on EMG findings. Duration of swallowing signal of submental muscles in all MS patients was found to be longer than in normal subjects (p = 0.001). During swallowing of 50 ml of sequential water, the compensatory respiratory cycles occurred more often in MS patients than normal subjects, especially during a relapse (p = 0.005). This is the first study investigating swallowing abnormalities and subclinical dysphagia from the electrophysiological aspect in MS patients with mild disability. The electrophysiological tests described in this study are useful to uncover subclinical dysphagia since they have the advantage of being rapid, easy to apply, non-invasive, and without risk for the patients

Monoballism Associated with Newly Onset Ketotic Hyperglycemia

Movement disorders as the initial symptoms of diabetes mellitus are rare. Here, we describe one of these rare manifestations of primary diabetes: a case of newly diagnosed diabetes mellitus in an old-age female patient with transient monoballismus during an episode of ketotic hyperglycemia