Acceptance of the extracare program by Beta interferon-treated patients with multiple sclerosis: results of the explore study.

BACKGROUND: To gain full benefit from disease-modifying therapies such as interferon ß-1b, patients with multiple sclerosis (MS) need to adhere to treatment in the long term. Treatment adherence requires high patient satisfaction with treatment and care. OBJECTIVES: Our aim was to evaluate the satisfaction of patients with MS receiving interferon ß-1b Extavia with the patient care program Extracare. Efficacy and safety of treatment were evaluated as secondary objectives. METHODS: In this prospective, noninterventional 1-year study, data on the satisfaction of 174 patients with MS with Extracare were obtained by questionnaires. Disability and symptom severity as well as patients' reported activity limitations, quality of life, and fatigue were recorded. RESULTS: We observed high levels of patients' satisfaction with MS nurses, telephonic care, and information provided by Extracare (values ≤ 1.53 on a Likert scale ranging from 1 [very good] to 6 [insufficient]). Patient reported quality of life (Patient Reported Indices for MS QoL) improved from 11.82 ± 11.36 at baseline to 9.74 ± 10.94 at the end of the study (p = .02), whereas clinical parameters of disease progression remained unchanged. Rate of adverse events was as expected. CONCLUSIONS: This study provides the basis for further improvements of care programs to increase treatment adherence of patients with MS.

Symptomatology of MS: results from the German MS Registry.

Since 2002, an MS Registry has been implemented by the German MS Society in more than 100 German MS centres. The objective is to provide information about disease characteristics, and to monitor the health care situation in a large population of patients. The aim of this report is to give detailed results on MS symptoms. By October 2008, data sets from 16,554 patients were recorded by 86 centres. A strikingly high number of persons suffered from fatigue and other "invisible" symptoms during early and late stages of the disease, underscoring the negative impact of these symptoms on quality of life in MS patients.

Multiple sclerosis registry in Germany: results of the extension phase 2005/2006.

INTRODUCTION: In 2001, a nationwide multiple sclerosis (MS) registry was initiated in Germany under the auspices of the German MS Society, (DMSG Bundesverband e.V.). The project aimed at collecting epidemiological data and information on health care provision for MS patients in Germany. METHODS: After a 2-year pilot phase, the original entry mask was modified, and new centers were recruited, resulting in the registration of a total of 5821 patients in 2005 and 2006. Following a 2 stage quality control process, standardized data sets for 5445 patients (93.5%) were able to be analyzed. RESULTS: Mean duration from onset of disease to diagnosis was 3.5 years. More than 70% of patients received immunomodulatory drugs, whereas symptomatic treatments were less commonly administered. The number of participating centers as of 31 December 2006 was 57 (29 neurological hospitals, 11 rehabilitation units, 13 specialized practitioners, and 4 regional MS centers). DISCUSSION: The MS registry provides valuable data on patterns of care for MS patients in Germany, and may help to improve service provision and overall quality of life for these patients.