OBJECTIVE: To describe independence in personal and instrumental activities of daily living (ADL), and frequency of social/lifestyle activities in a population-based sample of people with multiple sclerosis in Stockholm. DESIGN: Population-based survey. SETTING: Data collection in home environment. SUBJECTS: One hundred and sixty-six people with multiple sclerosis. INTERVENTIONS: Data were collected using measurements and structured interviews. MAIN MEASURES: Independence in ADL was assessed by the Barthel Index; independence in personal and instrumental ADL by the Katz Extended ADL Index; and frequency of social/lifestyle activities by the Frenchay Activities Index. RESULTS: The mean age was 51 +/- 12 years in the included 166 people with multiple sclerosis, of whom 71% (n = 118) were women. Fifty-two per cent (n = 85) were independent in personal ADL, 30% (n = 50) in instrumental ADL, and 35% (n = 57) had normal frequency of social/lifestyle activities. Most frequently affected ADL items were cleaning indoors and outdoors transportation (62%, n = 102) and the social/lifestyle items of household maintenance (59%, n = 97), walking outside (59%, n = 97), heavy housework (61%, n = 100), and gardening (68%, n = 112). CONCLUSIONS: ADL and social/lifestyle activities were affected in two-thirds of people with multiple sclerosis in Stockholm. The most affected items were items that could be classified as mobility-related and physically demanding, underlining the importance of developing and using evidence-based exercise treatments and rehabilitation to increase independence in people with multiple sclerosis in Stockholm.
The purpose of this study was to explore the experience of people with neurological conditions who take the chronic disease self-management (CDSM) programme. The CDSM programme is used to teach skills to manage chronic conditions, and prevent secondary conditions. Few studies have explored the use of the CDSM programme with people with neurological conditions, in spite of the long standing and sometimes unpredictable nature of those conditions.
This qualitative study explored the experience of people with stroke, multiple sclerosis (MS) and spinal cord injury (SCI) who participated in the CDSM programme. We completed individual interviews using a semi-structured interview guide with 22 individuals with stroke, MS and SCI.
Five categories emerged from the interview discussions including: (1) pre-programme influences; (2) group; (3) factors affecting learning opportunities; (4) workshop content and (5) outcomes.
The results of this study provide insights regarding the optimal way to present the CDSM programme to people with neurological conditions.
To determine the concordance between patients with multiple sclerosis and their clinical team members on the identification of goals for an inpatient rehabilitation stay.
Prospective cohort study of patients admitted for rehabilitation in an adult inpatient neurospinal unit at a Rehabilitation Centre in Ottawa, Canada. Twenty-seven patients (11 men and 16 women, mean age of 45.3 yrs) with either a laboratory or a clinically supported diagnosis of multiple sclerosis. Patients rated 55 goals from a preexisting list, indicating the importance of each goal to be addressed during the inpatient stay. The goals fell into five broad domains of health/medical issues, daily activities, mobility, community life, and personal well-being. Patients also identified their five most important individual goals. In a separate session, the clinical team also rated the 55 goals in relation to each patient and identified an independent list of the five most important rehabilitation goals. Main outcome measures included concordance between patient and team ratings in the identification of goals, ratings of the likelihood of success of achieving each goal, and ratings of the amount of change required to realize a minimal clinically important difference.
The patients and the team agreed on an average of 1.7 of the patient's five top-rated goals. Compared with the team, patients gave higher importance ratings to goals within the health/medical, mobility, and daily activities domains. They also considered that a greater average improvement would be required to achieve a meaningful benefit, and they gave higher ratings of the likelihood of success in achieving their selected goals.
Patients with multiple sclerosis and clinical team members do not necessarily agree on specific goals for a rehabilitation stay. Patients may also have greater expectations than clinicians with respect to the amount of improvement and the likelihood of achieving their goals.
Approximately 60%-80% of all multiple sclerosis (MS) patients are heat sensitive. The aim of this study was to gain information on the effects of an assistive device, the cooling-suit, on MS-patients' self-care ability and also practical implications. A single-case approach was adopted in a quasi- experimental before-and-after study. The cooling-suit was used in their own homes by 10 individuals with diagnosed MS in different stages from relapsing-remitting to chronic progressive. Data collection procedures were self-assessment through a structured assessment-instrument, an open-ended interview before and after the intervention and a diary written during one week. The selected instrument, the MS Self-Care ADL Scale, has been developed for persons with MS and was translated into Swedish. The results showed increased self-care ability during and after use of the cooling-suit. However, different aspects of daily life activities were improved and to a varying extent. It is concluded that the study participants were supported and empowered in different activities of daily life such as walking and transfer and reduced voiding problems by using the cooling-suit. Some difficulties in handling the cooling-suit were also reported.
Globally, the number of people suffering from multiple sclerosis (MS) is more than two million, and MS is characterized by increasing symptom development over time. The socio-economic costs are enormous. Therefore, effective management of MS is of great importance. Multidisciplinary rehabilitation (MR) seeks to prevent and stop loss of function and trains the patients to deal with symptoms and challenges that will arise in the future. Because there is a need for high-quality evidence of the effectiveness of MR, the MS hospitals in Denmark have initiated the largest study of its kind on MR.
To investigate the effects of aerobic and strength exercise on motor fatigue of knee flexor and extensor muscles in subjects with multiple sclerosis (MS).
A randomized controlled trial.
At Masku Neurological Rehabilitation Centre, Masku, and the Social Insurance Institution, Research Department, Turku, Finland.
Ninety-five MS patients with mild to moderate disability were randomized into exercise group (n =47) and a control group (n =48).
Participants in the exercise group attended in a supervised exercise period of three weeks, which was followed by a home exercise programme lasting for 23 weeks. Patients in the control group continued with their normal living.
Motor fatigue of knee flexor and extensor muscles was measured during a static 30-s maximal sustained muscle contraction. The decline in force (Nm) during the 30 s was recorded, and a fatigue index (FI) was calculated. Subjective fatigue was measured by using the Fatigue Severity Scale (FSS). The Ambulatory Fatigue Index (AFI) was calculated on the basis of a 500-m walking test. Assessment took place at baseline, at the third week (not for the control group) and at the 26th week. All outcome variables were analysed, men and women together, and some interesting contrasts were analysed by gender.
Associations were observed with changes in extension FI and Expanded Disability Status Scale (EDSS) score and mean extension torque (Nm), but not with changes in FI and aerobic or strength exercise activity, mean AFI, mean FSS or in mean knee flexion torque. AFI was decreased in all subject groups (p =0.007). Motor fatigue was reduced in knee flexion (p=0.0014) and extension (ns) among female but not in male exercisers after six months of exercise. The exercise activity of women was 25% higher than that of the men.
Six months of exercise reduced motor fatigue in women, but not in men.
The purpose of this study was to examine the preferred sources and methods for acquiring physical activity information of individuals with multiple sclerosis (MS) using the Comprehensive Model of Information Seeking. A secondary objective was to explore the barriers and facilitators to physical activity information seeking.
Twenty-one participants diagnosed with MS participated in focus groups or telephone interviews.
A direct content analysis of the transcripts revealed that individuals appeared to generally prefer receiving physical activity information during period of relapse and remission. Participants also had positive beliefs toward physical activity and a clear preference for a time when physical activity messages would be relevant. Receiving physical activity information from credible sources such as the MS Society of Canada, healthcare professionals and peers with MS was also deemed important. The Internet was a preferred source to receive information due to its accessibility, but it often was considered to lack credibility. The lack of physical activity information specific to MS is the greatest barrier for individuals with MS to learn about physical activity.
Healthcare professionals, National MS Societies, and peers should work together to deliver specific and relevant physical activity messages the MS population.
People with MS want more physical activity information from credible sources. Multiple vehicles of physical activity information delivery (i.e. healthcare providers, peers, MS Society) should be utilized. Physical activity information should be tailored to the individual with MS.
BACKGROUND: Multiple sclerosis (MS) patients accumulate both physical and mental health problems along with disease progression. Valid and sensitive outcome measures are important to measure disease effects and the effect of treatment. OBJECTIVE: The objective of this study was to test the performance of the physical and mental summary scales of SF-36, SF-12, and RAND-36. METHODS: The scales were evaluated by comparing the scores of a cohort of 194 MS patients with general population data and using the Expanded Disability Status Scale (EDSS) and the Incapacity Status Scale-mental as criterion variables for physical functioning and mental health. RESULTS: All 3 physical summary scales were markedly reduced and correlated highly with the EDSS. The SF-36 mental summary score was only slightly reduced among MS patients (0.2 SD) compared with the general population, despite significantly reduced scores on all 4 health scales being most related to mental health and despite a high prevalence of mental health problems. This results from the poor physical functioning (mean scale score, 2.3 SD below the general population) and the orthogonal factor rotation used to derive independent measures of physical and mental health. Similar results were found for the SF-12. The nonorthogonal RAND-36 physical and mental summary scores were both markedly reduced. This is more compatible with the disease progression in MS and the results of the other measures of physical and mental health used in the study. CONCLUSIONS: The SF-36 and SF-12 mental health summary scales appear to overestimate mental health in people with MS.