Thorsten Schultheiss

Use and Acceptance of Electronic Communication by Patients With Multiple Sclerosis: A Multicenter Questionnaire Study

Background The number of multiple sclerosis (MS) information websites, online communities, and Web-based health education programs has been increasing. However, MS patients’ willingness to use new ways of communication, such as websites, mobile phone application, short message service, or email with their physician, remains unknown. Objectives We designed a questionnaire to evaluate the a priori use of electronic communication methods by MS patients and to assess their acceptance of such tools for communication with their health care providers. Methods We received complete data from 586 MS patients aged between 17 and 73 years. Respondents were surveyed in outpatient clinics across Germany using a novel paper-and-pencil questionnaire. In addition to demographics, the survey items queried frequency of use of, familiarity with, and comfort with using computers, websites, email, and mobile phones. Results About 90% of all MS patients used a personal computer (534/586) and the Internet (527/586) at least once a week, 87.0% (510/586) communicated by email, and 85.6% (488/570) communicated by mobile phone. When asked about their comfort with using electronic communication methods for communication with health care providers, 20.5% (120/586) accepted communication by mobile Internet application or short message service via mobile phone, 41.0% (240/586) by websites, 54.3% (318/586) by email service, and 67.8% (397/586) by at least one type of electronic communication. The level of a priori use was the best predictor for the acceptance of electronic communication with health care providers. Patients who reported already searching online for health information (odds ratio 2.4, P < .001) and who had already communicated with a physician through a website (odds ratio 3.3, P = .03) reported higher acceptance for Web-based communication. Patients who already scheduled appointments with their mobile phones (odds ratio 2.1, P = .002) were more likely to accept the use of mobile phone applications or short message service for communicating with their physician. Conclusions The majority of MS patients seen at specialist centers already use modern communication technology regularly. New forms of electronic communication appear to have high levels of acceptance for exchanging information about MS between patients and health care providers. Such methods should be integrated into eHealth services such as electronic health records and patient relationship management systems.

Reliability of brain CT evaluation by stroke neurologists in telemedicine

Objective: To determine the reliability and therapeutic impact of standardized cerebral CT evaluation and quantification of early ischemic changes (EIC) with the Alberta Stroke Program Early CT Score (ASPECTS) by stroke neurologists in the Stroke Eastern Saxony Network (SOS-NET), which provides telemedical consultations for patients with acute ischemic stroke. Methods: Two neuroradiologists re-evaluated all CT scans of consecutive SOS-NET patients in 2009 blinded to clinical information providing reference standard. We defined discrepant CT findings as all false-positive or false-negative EIC and brain pathology findings and ASPECTS deviations >1 point. We subsequently discussed the clinical impact of discrepant CT findings unblinded to clinical information. Weighted kappa (κw) statistic was used to determine the interobserver agreement for ASPECTS. Results: Of 582 patients, complete imaging data were available for 536 patients (351 cerebral ischemic events, 105 primary intracranial hemorrhages, and 80 stroke mimics). The neuroradiologists detected discrepant CT findings in 43 patients (8.0%) that were rated as clinically relevant in 9 patients (1.7%). Stroke neurologists recommended IV thrombolysis in 8 patients despite extensive EIC (ASPECTS ≤5). One of these patients had symptomatic intracranial hemorrhage. In 1 nonthrombolyzed patient, the stroke neurologist missed subdural hematoma. The interobserver agreement on ASPECTS between stroke neurologists and expert readers was substantial (κw = 0.62; 95% confidence interval 0.54–0.71). Conclusions: Clinically relevant misinterpretation of the CT scans was rare in our acute telestroke service. ASPECTS is a reliable tool to assess the extent of EIC by stroke neurologists in telemedicine in real time.

Multiple sclerosis documentation system (MSDS): moving from documentation to management of MS patients

The long disease duration of multiple sclerosis and the increasing therapeutic options require a individualized therapeutic approach which should be carefully documented over years of observation. To switch from MS documentation to an innovative MS management, new computer- and internet-based tools could be implemented as we could demonstrate with the novel computer-based patient management system “multiple sclerosis management system 3D” (MSDS 3D). MSDS 3D allows documentation and management of visit schedules and mandatory examinations via defined study modules by integration of data input from various sources (patients, attending physicians and MS nurses). It provides forms for the documentation of patient visits as well as clinical and diagnostic findings. Information can be collected via interactive touch screens. Specific modules allow the management of highly efficacious treatments as natalizumab or fingolimod. MSDS can be used to transfer the documented data to databases as, e.g. the registry of the German MS society or REGIMS. MSDS has already been implemented successfully in clinical practice and is currently being evaluated in a multicenter setting. High-quality management and documentation are crucial for improvements in clinical practice and research work.

Modern communication technology skills of patients with multiple sclerosis

There is an increasing trend for the use of the Internet and other electronic communication types for health purposes (e.g. information websites, online communities, and Webbased health education programmes) with the highest use among young women and city dwellers.1,2 Due to its preponderance in young females (about 70%) showing first symptoms between the ages of 20 and 40 years, patients with multiple sclerosis (MS) may be proper representatives for upcoming eHealth trends. To substantiate this assumption, we investigated the current use of new types of communication by MS patients. Thereby, we sought to draw a conclusion on which electronic communication type could be the most promising one for medical MS management. We hypothesized that the majority of MS patients would already be using an array of electronic communication devices. Therefore, we developed a questionnaire containing 18 items on the frequency and nature of personal computer, website, email and mobile phone use by MS patients, as well as demographic characteristics. A full version of this questionnaire and some findings from our multicentre survey have been recently published.3 In the current study, we focused on the aspects of patients’ technology skills and on the increase of the number of included patients. Out of 1116 patients who enrolled in the anonymous survey, a total of 1096 patients (98.2%) with clinically definite MS according to the McDonald criteria completed the relevant item set of the paper-based, self-developed questionnaire during outpatient clinic visits in several neurological outpatient centres in Germany between 2009 and 2010. The majority of study patients were female (71.2%) and showed a mean age of 41.52 years (SD: 10.81; range: 17–73), equalling well to typical population statistics of patients with multiple sclerosis. Patients’ disease duration averaged 9.28 years (SD: 6.33). Within the survey population, more than nine in 10 MS patients owned a computer, a mobile phone and had regular access to the Internet (Table 1). Eighty-eight per cent of MS patients used a computer at least once a week. Similar percentages were measured for a weekly use of the Internet (86.7%), emails (82.4%) and mobiles phones (85.1%), which should be an appropriate minimal frequency for the use in medical management. Eighty-three per cent of patients said they could acquaint themselves quickly with new software and six in 10 patients reported that they had already installed new computer programs. Some patients said they would use text-based chats (13.3%) or video-based chats (8.1%). MS-related information seeking on the Internet was reported for 41.7% of MS patients. Our results give evidence that MS patients are very familiar with the regular use of modern communication technology (computers, websites, emails and mobile phones). The majority of patients reported relevant information and communication technology skills such as installing software and acquainting with new software. Furthermore, four in 10 MS patients retrieved health information online. Our findings are in line with results from Lejbkowicz et al. and Hay et al., even if the rates of 471882 MSJ19910.1177/1352458512471882Multiple Sclerosis JournalHaase et al. 2013

Rapidly progressive course of very late onset multiple sclerosis presenting with Parkinsonism: case report

Multiple sclerosis mainly affects young adolescents, making late-onset multiple sclerosis a rarity and diagnostic challenge, particularly for cases after age 80 years. We present an 82-year-old patient with multiple sclerosis with very late onset. As well as spastic paraplegia, additional Parkinsonism secondary to demyelination in the basal ganglia was observed in this case. In most publications, spinal cord lesions were more common in late-onset multiple sclerosis which, in contrast, could not be found in our case. Despite different treatment strategies, rapid clinical deterioration and death after about 2 years of disease course occurred. Further discrimination in late-onset multiple sclerosis (50–70 years) and multiple sclerosis with very late onset (above 70 years) might be considered. Future trials to elucidate potential benefit of immunosuppressive (and neuroprotective) therapies in these age groups are mandatory.

Fampridine response in MS patients with gait impairment in a real-world setting: Need for new response criteria?

Objective: The primary objective of this real-world study was to describe the response to fampridine and changes of gait parameters in multiple sclerosis (MS) patients’ walking disability (Expanded Disability Status Scale (EDSS): 4–7) after treatment with fampridine for 2 weeks as recommended by the European Medicines Agency (EMA) and compare it with the overall physician’s judgement. Methods: A total of 211 adult MS patients were analyzed using a multimodal gait assessment including the timed 25-foot walk test (T25FW), 2-minute walking test (2-MWT), 12-item Multiple Sclerosis Walking Scale (MSWS-12), the GAITRite electronic walkway system, and the patients’ clinical global impression (CGI). Multimodal gait assessment was compared with the clinician’s impression of overall improvement after 2 weeks. Results: In total, 189 subjects were included, of which 133 (70.37%) were responders to fampridine (RF), according to physician’s judgement. Looking at independent multimodal gait assessment, RFs showed improvement of 12.60% in the T25FW, 19.25% in the 2-MWT, 21.12% in the MSWS-12, and 6.54% in their Functional Ambulation Profile (FAP) score. The combination of the T25FW and the MSWS-12 would offer the best sensitivity and specificity for determining response to fampridine according to both neurologists’ and patients’ classification. Conclusion: This study provides new information on the use of fampridine in a real-world setting with a large patient sample on the potential benefit of using more definitive responder criteria to fampridine for the clinical setting.

Evaluation of heart involvement in calpainopathy (LGMD2A) using cardiovascular magnetic resonance.

Cardiac dysfunction occurs in several forms of limb girdle muscular dystrophy (LGMD). The aim of this study was to investigate cardiac involvement in calpainopathy (LGMD2A).

Accuracy of CT-diagnostics by stroke neurologists in telemedicine for acute stroke patients

Internal capsular genu infarcts infrequently cause cognitive impairment and behavioral changes, and little is known about the underlying mechanism. Using diffusion-tensor imaging (DTI) and the fractional anisotropy (FA) index in the region of interest (ROI) and ipsilesional frontal cortex, we evaluated two patients with internal capsular genu infarction who presented with frontal dysfunction and cognitive impairment. The reported findings help to elucidate the mechanism underlying cognitive deterioration in internal capsular genu infarction. J Korean Neurol Assoc 28(2):104-107, 2010

Neuroborreliosis during natalizumab treatment in multiple sclerosis

We present a case of acute neuroborreliosis in the setting of long-term treatment with natalizumab. A 33-year-old man was diagnosed with relapsing-remitting multiple sclerosis (MS) in 1999. Following failure of various immunomodulatory treatments including interferon and immunoglobulin, he was treated with mitoxantrone from May 2000 to August 2004. Due to persistently high disease activity, he was also treated with cyclophosphamide (December 2005–April 2006) and then azathioprine (April–June 2006), which were both discontinued due to adverse effects. After the patient scored 6.5 on the Expanded Disability Status Scale and had 2 relapses in 2006, we initiated natalizumab therapy (300 mg monthly, starting September 2006). The patient improved significantly in ambulation and the relapse rate slowed as well.

Monitoring Free and Cell-Bound Natalizumab in CSF and Blood in Natalizumab-Treated MS Patients (P02.071)

Objective: To develop a FACS-based assay to detect free and cell-bound natalizumab-concentration in CSF and blood. Background Natalizumab is an approved therapy for highly active RRMS. By blocking VLA-4 on leukocytes, migration of immune cells into the CNS is reduced. Whereas the blockade of VLA-4 in the periphery is well known, no data are available on pharmacodynamics and -kinetics of natalizumab in the CSF. Design/Methods: For the analysis of natalizumab concentration/surface binding and VCAM-binding in CSF and blood, paired CSF and blood samples of natalizumab-treated MS patients were prospectively analyzed. Results: In patients treated with natalizumab, significant amounts of natalizumab (0.047± 0.040µg/ml) could be found in CSF, about 450-times lower than in serum (21.78± 14.4µg/ml). In controls no natalizumab was detectable in CSF nor serum. Concentration in CSF depends on BBB-damage and individual properties, as demonstrated by correlation analysis. Functional experiments showed, that natalizumab in CSF and serum was still functional active on VLA-4-blocking. Quantity of cell-bound natalizumab differed between individual cell-subsets. Before natalizumab-infusion mean saturation in relation to maximal load differed between 48% to 62% before and 74% to 92% after infusion. We could find a strong correlation between cell-bound and free natalizumab. Relative decrease 4 weeks after infusion was more pronounced for free (-78%) than cell-bound natalizumab (-25%). In-vitro experiments demonstrated that cell-bound natalizumab could serve as a reservoir. Patients with anti-natalizumab neutralizing antibodies could be easily detected by analysis of natalizumab-concentration in serum and CSF. Here no natalizumab could be demonstrated. In-vitro, several neutralizing antibodies were able to remove cell-bound natalizumab from immune cells. Conclusions: Here we demonstrate for the first time that still functionally active natalizumab was detectable in the CSF of natalizumab-treated patients. Using our assay, we were able to describe individual pharmacokinetics and -dynamics in natalizumab-treated patients. Our approach could be used to monitor prospectively natalizumab-treated patients. Disclosure: Dr. Sehr has nothing to disclose. Dr. Hainke has nothing to disclose. Dr. Thomas has received research support from Teva Neuroscience. Dr. Schultheiss has nothing to disclose. Dr. Ziemssen has received personal compensation for activities with Biogen Idec, Bayer Healthcare, Novartis, Sanofi-Aventis Pharmaceuticals, Inc., Teva Neuroscience, and Synthon. Dr. Ziemssen has received research support for from Bayer Healthcare, Biogen Idec, Novartis, Teva Neuroscience, and Sanofi-Aventis Pharmaceuticals, Inc.