Multiple sclerosis in Finland 2018-Data from the national register.

OBJECTIVES: Finland is a high-risk multiple sclerosis (MS) region, but a national MS register has not existed until 2014. In this paper, we present the Finnish MS register variables and data collected by 31 December 2018. MATERIALS AND METHODS: Numbers and data counts of MS patients in the register (ICD-10 code G35) are presented. The disease types and proportion of patients receiving disease-modifying treatments (DMTs) were analysed in five hospital districts with most complete data sets. MS prevalence in Finland was estimated using administrative hospital discharge data as an additional resource. RESULTS: There were a total of 8722 MS patients in the Finnish MS register by 31 December 2018 (71.5% females). Mean age at MS diagnosis was 38.7 years and peak prevalence was at age 50-54 years. Disease course was relapsing remitting (RRMS) in 66.7%, secondary progressive (SPMS) in 13.5%, and primary progressive (PPMS) in 7.9% of the 5365 MS patients in the selected districts with most complete data. A total of 66.0% of RRMS patients, 19.6% of SPMS patients and 9.9% of PPMS patients were receiving DMTs. By combining MS register data with databases of those hospitals that had not joined the register, the nationwide prevalence estimate was between 10 and 11 thousand patients (corresponding to crude prevalence 180-200/100 000). CONCLUSIONS: The Finnish MS register is currently used in 15/21 Finnish hospital districts. By register integration into the electronic patient files, the coverage of the register has increased to approximately 80% of the estimated Finnish MS population.

A randomised, double blind, placebo controlled trial with vitamin D3 as an add on treatment to interferon ß-1b in patients with multiple sclerosis.

OBJECTIVES: To study the safety and efficacy of vitamin D3 as an add on therapy to interferon ß-1b (IFNB) in patients with multiple sclerosis (MS). METHODS: 1 year, double blind, placebo controlled, randomised study in 66 MS patients. The primary outcomes were T2 burden of disease (BOD) on MRI scans, proportion of patients with serum levels of 25-hydroxyvitamin D (25(OH)D) ≥85 nmol/l or intact parathyroid hormone (PTH) ≤20 ng/l, and number of adverse events. Secondary outcomes were number of MRI enhancing T1 lesions and new T2 lesions, annual relapse rate, changes in the Expanded Disability Status Scale score, timed 25 foot walk test and timed 10 foot tandem walk tests. RESULTS: Median change in BOD was 287 mm(3) in the placebo group and 83 mm(3) in the vitamin D group (p=0.105). Serum levels of 25(OH)D increased from a mean of 54 (range 19-82) nmol/l to 110 (range 67-163) nmol/l in the vitamin D group. 84% of patients reached a serum 25(OH)D level >85 nmol/l in the vitamin D group and 3% in the placebo group (p<0.0001). Patients in the vitamin D group showed fewer new T2 lesions (p=0.286) and a significantly lower number of T1 enhancing lesions (p=0.004), as well as a tendency to reduced disability accumulation (p=0.071) and to improved timed tandem walk (p=0.076). There were no significant differences in adverse events or in the annual relapse rate. CONCLUSION: Vitamin D3 add on treatment to IFNB reduces MRI disease activity in MS. TRIAL REGISTRATION NUMBER: EudraCT number 2007-001958-99 and ClinicalTrialsGov number NCT01339676.

Measuring deterioration in international classification of functioning domains of people with multiple sclerosis who are ambulatory.

BACKGROUND AND PURPOSE: Measures to detect important effects related to physical therapy interventions must be able to detect an important change. The purpose of this study was to select the most responsive physical functioning measures for multiple sclerosis (MS) using the International Classification of Functioning, Disability and Health (ICF) as a framework. SUBJECTS: The participants were 120 people with MS who were ambulatory from a population-based sample. METHODS: Physical functioning was assessed by quantitative clinical measures of activities (n=5) and body functions (n=7) and by self-reported performance in self-care, mobility, and domestic life domains in the activities and participation component of the ICF at baseline and 2 years later. A participant's perception of change and a change in Expanded Disability Status Scale (EDSS) scores were used as external criteria in the analysis of the receiver operating characteristic curve and the minimally important change score. The minimal detectable change was calculated as distribution-based responsiveness. RESULTS: According to the external criteria, 51% of the participants showed deterioration as measured by their own perceptions compared with the 26% of the participants who showed deterioration as rated by the clinician. Regardless of the external criterion applied, the measures most responsive to deterioration were self-reported scores in self-care, mobility, and domestic life; distance walked and change in heart rate during a 6-minute walk test; 10-m walk test speeds, stride length, and cadence; repetitive squatting; and Box and Block Test scores. DISCUSSION AND CONCLUSION: The results show the relative responsiveness of different measures in the subsample who deteriorated and provide data that can facilitate the interpretation of score changes in people with MS who are ambulatory for future studies and in clinical practice.

Measures of physical functioning predict self-reported performance in self-care, mobility, and domestic life in ambulatory persons with multiple sclerosis.

OBJECTIVE: To determine the associations between clinically measured physical functioning variables and self-reported performance in mobility, self-care, and domestic life in ambulatory persons with multiple sclerosis (MS), using the International Classification of Functioning, Disability and Health (ICF) as a framework. DESIGN: Survey study. SETTING: Community setting in Finland. PARTICIPANTS: A population-based sample of 120 ambulatory persons with MS (30 men, 90 women) with mean age 45.0+/-10.8 years (range, 20-71 y), mean disease duration from symptom onset 12.3+/-8.8 years (range, 1-39 y), and mean Expanded Disability Status Scale 2.8+/-2.0 (range, 0-6.5). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The primary dependent variables were self-reported performance in self-care, mobility, and domestic life from the Functional Status Questionnaire. The physical functioning variables were drawn from the ICF activities (n=9) and body functions (n=14) categories. Age- and sex-adjusted odds ratios from multinomial logistic regression were estimated for the physical functioning variables associated with activities of daily living (ADL) performance. RESULTS: Overall, of this cohort 31% reported difficulties or dependence in self-care, 52% in mobility, and 68% in domestic life. The most significant predictors of perceived difficulties or dependence in ADL performance were: (1) lower scores in the Box and Block Test; (2) lower Berg Balance Scale scores; (3) greater velocity moment when standing with eyes open; (4) slower ten-meter walk test times and shorter stride length at normal speed; and (5) shorter distance in the six-minute walk test. CONCLUSIONS: Perceived difficulties and dependence were most prominent in domestic life. In particular, measures of activities predicted difficulties in ADL performance. Monitoring of physical functioning should be extended to those independent MS persons reporting difficulties in ADL performance.

Physical functioning in multiple sclerosis: a population-based study in central Finland.

OBJECTIVE: To describe multiple sclerosis and its impact on individuals' perceived problems in functioning, particularly in the domains of self-care, mobility and domestic life. DESIGN: A population-based study in a prevalence cohort of multiple sclerosis subjects in Central Finland region carried out in the year 2000. SUBJECTS: A total of 240 subjects with multiple sclerosis. METHODS: A postal questionnaire for assessing physical functioning was developed. RESULTS: Ninety percent of the study population completed the study. Subjects' average age was 48.2 years (range 20-76 years) and time since symptom onset was 15.8 years (range 0-56 years). Of the subjects, 82% were fully independent in self-care activities and 53% in domestic life, 50% were able to walk without any perceived problems and 38% had a permanent need for a walking aid. Fatigue was the most frequent complaint having an impact on subjects' daily life. Ninety-five subjects out of 240 (40%) were engaged in working life. CONCLUSION: These data give a clear indication of favourable functioning in mobility, self-care and domestic life. However, the fact remains that multiple sclerosis is a disabling and costly disease. These results provide information for use by local and national authorities in planning and co-ordinating rehabilitation interventions and social services.

Reliability of physical functioning measures in ambulatory subjects with MS.

BACKGROUND AND PURPOSE: One of the primary reasons for measuring outcomes during rehabilitation is to determine the effect of physiotherapy. Repeated measurement situations are susceptible to several sources of error, including inconsistencies caused by the subject, the procedure, the instrument and the examiner. Therefore, the reliability of the measures needs to be examined. METHOD: The present study used a repeated-measures design. Two studies were undertaken to examine the test-retest and inter-rater reliability for physical functioning measures. The interval between the measurements was one week. The sample consisted of 19 ambulatory subjects with multiple sclerosis (MS) in the test-retest and nine subjects in the inter-rater reliability study. The measures were selected to assess different domains of the World Health Organization International Classification of Functioning, Disability and Health (WHO, 2001). Several parameters of the Box and Block Test (BBT), the Berg Balance Scale (BBS), the Kela Coordination test, the postural stability test, the timed 10-metre gait test, the six-minute walk test, the shoulder tug test, grip strength, maximal isometric force of the knee extensors, muscle endurance tests, the modified Ashworth Scale and passive straight leg raise test were examined in terms of reliability. RESULTS: The intra-class coefficient (ICC) values for test-retest reliability were >0.80 in 17 of 23 parameters, and correspondingly so in 20 out of 26 parameters for inter-rater reliability. Poor reliability (defined as ICC < or = 0. 60) was obtained only for the patient classification index (PCI) of the six-minute walk test in the test-retest reliability study. In general, the coefficient of variation was good. A moderate amount of variability was discovered for the Kela Coordination test, and for postural stability and muscle endurance tests. The data obtained from the modified Ashworth Scale and the shoulder tug test were highly skewed and the percentage of agreement ranged between 63.9% and 93.4%. CONCLUSIONS: The study revealed acceptable test-retest and inter-rater reliability of these measures in ambulatory subjects with MS, with the exception of the Modified Ashworth Scale and the shoulder tug test.