Charlotte Ytterberg

A 10-year follow-up of a population-based study of people with multiple sclerosis in Stockholm, Sweden: Changes in disability and the value of different factors in predicting disability and mortality

BACKGROUNDnMost people with multiple sclerosis (PwMS) experience progressively worsening disability over a period of decades, thus further knowledge about the long-term changes in different areas of disability is essential.nnnOBJECTIVESnThe aims of this study were to evaluate changes in disability over ten years in PwMS, and to explore the value of personal and disease-specific factors and depressive symptoms in predicting disability. A further aim was to explore the value of these factors as predictors of mortality.nnnMETHODSnThis study was based on a 10-year follow-up of a population-based study in Stockholm (n=166). Home visits were used to collect data on personal and disease-specific factors, walking ability, manual dexterity, cognitive function, mood, activities of daily living (ADL) and social/lifestyle activities.nnnRESULTSnThe proportion of the study population who had disability in cognition, mood and social/lifestyle activities remained stable, while the proportion with disability in walking, manual dexterity and ADL increased. Disease severity predicted an increase in all studied variables of disability except in depressive symptoms. Older age and depressive symptoms were associated with mortality.nnnCONCLUSIONnThis study illustrates the importance of tailored interventions for PwMS and highlights the need for health-care professionals to consider the psychological aspects of the disease. Furthermore, our results indicate that the Expanded Disability Status Scale was a useful tool for predicting future disability.

A client-centred ADL intervention : three-month follow-up of a randomized controlled trial

Abstract Objective: The aim was to study a client-centred activities of daily living (ADL) intervention (CADL) compared with the usual ADL intervention (UADL) in people with stroke regarding: independence in ADL, perceived participation, life satisfaction, use of home-help service, and satisfaction with training and, in their significant others, regarding: caregiver burden, life satisfaction, and informal care. Methods: In this multicentre study, 16 rehabilitation units were randomly assigned to deliver CADL or UADL. The occupational therapists who provided the CADL were specifically trained. Eligible for inclusion were people with stroke treated in a stroke unit ≤3 months after stroke, dependent in ≥two ADL, not diagnosed with dementia, and able to understand instructions. Data were collected at inclusion and three months thereafter. To detect a significant difference between the groups in the Stroke Impact Scale (SIS) domain “participation”, 280 participants were required. Intention-to-treat analysis was applied. Results: At three months, there was no difference in the outcomes between the CADL group (n = 129) and the UADL group (n = 151), or their significant others (n = 87/n = 93) except in the SIS domain “emotion” in favour of CADL (p = 0.04). Conclusion: The CADL does not appear to bring about short-term differences in outcomes and longer follow-ups are required.

Poor concurrence between disabilities as described by patients and established assessment tools three months after stroke: A mixed methods approach

BACKGROUNDnDisability/problems, one phenomenon underlying peoples need for health care services, can be viewed both from the perspectives of people with stroke (felt problems), and the health professionals (assessed problems).nnnOBJECTIVEnThe aim was to describe felt problems three months after stroke and to explore the concurrence between felt problems and assessed problems.nnnMETHODnThe patients (n=203) received care in the stroke units at Karolinska University Hospital, Sweden. Felt problems, drawn from an open question, were categorized. Results from established assessment tools: Katz Extended Index of ADL (KI); Barthel Index (BI) and Stroke Impact Scale (SIS) represented assessed problems. Items/domains in the assessment tools that corresponded to the categories of felt problems were identified and comparisons performed.nnnRESULTnThe category Fatigue had the largest number of felt problems (n=58, 28%). Fourteen out of the 24 categories of felt problems had corresponding items/domains in the assessment tools. KE/BI failed to identify 16-57% and SIS 0-33% of the felt problems.nnnCONCLUSIONnThere was a substantial lack of concurrence between felt and assessed problems. The results indicate that the use of standardized instruments should be complemented by a dialog if health services are to be based on problems experienced by the patients.

How are cognitive impairment, fatigue and signs of depression related to participation in daily life among persons with multiple sclerosis?

Abstract Purpose: Factors that impact participation are of scientific and clinical importance. Participation in everyday activities among persons with multiple sclerosis (MS) can be compromised by various factors however the combined contribution of these factors to participation has not been explored. The aim of this study was to describe the relationship between cognitive impairment, physical disability and signs of depression and participation in daily life among persons with MS. Methods: Data from 200 participants were collected in an observational, prospective study. The majority was female, had mild physical disability, and an average age of 48.7. The impact of independent variables, including demographic and disease related data, levels of cognitive impairment, signs of depression and fatigue, on participation was investigated using path analysis. Results: Cognitive impairment was associated with restricted participation in domestic, leisure and outdoor domains. Restrictions in leisure and outdoor activities, but not domestic activities were related to signs of depression. Cognitive impairment was associated with the level of education and the level of physical disability. Conclusions: Increasing participation is an important outcome of rehabilitation. The results of this study suggest a multifactorial approach to intervention that considers physical, mental and emotional component to maximize participation among persons with MS. Implications for Rehabilitation Rehabilitation for persons living with multiple sclerosis (MS) should incorporate careful evaluation of physical disability, cognitive impairment and depression and their impact on participation. Clinicians need to evaluate participation in a variety of daily activities, including activities within and outside of the home, and leisure activities. Signs of depression may have a greater impact on participation in outdoor and leisure activities then on other activities.

Changes in the impact of stroke between 3 and 12 months post-stroke, assessed with the Stroke Impact Scale

OBJECTIVEnTo examine data collected using the Stroke Impact Scale 3.0 (SIS) at 3 and 12 months post-stroke, and to explore any clinically meaningful changes in everyday life in relation to age, gender and stroke severity.nnnDESIGNnProspective longitudinal study.nnnMETHODSnA total of 204 persons were assessed using the SIS at 3 and 12 months after onset of stroke. Changes in domain scores were calculated over time and in relation to age, gender and stroke severity.nnnRESULTSnThe Strength, Hand Function and Participation domains had the highest perceived impact at 3 and 12 months, indicating problems in everyday life. Stroke recovery was perceived to be significantly higher at 12 than at 3 months irrespective of stroke severity, age or gender. The impact on the Strength and Emotion domains was significantly lower at 12 months than at 3 months. Most clinically meaningful changes, both positive and negative (±u200915 points), were seen in the Participation domain and in Stroke recovery. Few changes were associated with age, gender or stroke severity.nnnCONCLUSIONnBoth positive and negative clinically meaningful changes related to impact of stroke were found between 3 and 12 months post-stroke. Therefore it is important to pay close attention to patients perceptions of their everyday life situation during rehabilitation and at discharge.

Occurrence and Predictors of Falls in People With Stroke: Six-Year Prospective Study

Background and Purpose— The purpose was to investigate the occurrence of self-reported falls in people with stroke at 3, 6, and 12 months and 6 years post stroke and predictors for falls during 6 years. Methods— A prospective study involving 121 people with stroke. Data were obtained through structured interviews and assessments. Generalized estimating equation modeling using proportional odds was used to explore the predictive value of fall history, functioning/disability, and personal factors during 6 years. Results— The proportion of fallers constituted of 35%, 26%, 33%, and 35% of the sample at 3, 6, and 12 months and 6 years of follow-up, respectively. Higher perceived effect of stroke on activities of daily living (odds ratio, 1.37; 95% confidence interval, 1.04–1.80), falls at 3 months (odds ratio, 1.0; 95% confidence interval, 1.01–3.94), and no gait/balance disability at baseline (odds ratio, 7.29; 95% confidence interval, 1.99–26.73) were predictors for future falls. During the 6 years, the odds for a fall decreased for participants with gait/balance disability at baseline but increased for those with no gait/balance disability. Conclusions— Results highlight the importance of performing fall risk evaluations over time among people with stroke, even when gait and balance functioning initially post stroke is good.

The combined perceptions of people with stroke and their carers regarding rehabilitation needs 1 year after stroke: a mixed methods study.

Objectives The aim of the study was to explore the associations between the dyad’s (person with stroke and informal caregiver) perception of the person with stroke’s rehabilitation needs and stroke severity, personal factors (gender, age, sense of coherence), the use of rehabilitation services, amount of informal care and caregiver burden. Further, the aim was to explore the personal experience of everyday life changes among persons with stroke and their caregivers and their strategies for handling these 1u2005year after stroke. Design A mixed methods design was used combining quantitative and qualitative data and analyses. Setting Data were mainly collected in the participants’ homes. Outcome measures Data were collected through established instruments and open-ended interviews. The dyads perceptions of the person with stroke’s rehabilitation needs were assessed by the persons with stroke and their informal caregivers using a questionnaire based on Ware’s taxonomy. The results were combined and classified into three groups: met, discordant (ie, not in agreement) and unmet rehabilitation needs. To assess sense of coherence (SOC) in persons with stroke, the SOC-scale was used. Caregiver burden was assessed using the Caregiver Burden Scale. Data on the use of rehabilitation services were obtained from the computerised register at the Stockholm County Council. Participants 86 persons with stroke (mean age 73u2005years, 38% women) and their caregivers (mean age 65u2005years, 40% women). Results Fifty-two per cent of the dyads perceived that the person with stroke’s need for rehabilitation was met 12u2005months after stroke. Met rehabilitation needs were associated with less severe stroke, more coping strategies for solving problems in everyday activities and less caregiver burden. Conclusions Rehabilitation interventions need to focus on supporting the dyads’ process of psychological and social adaptation after stroke. Future studies need to explore and evaluate the effects of using a dyadic perspective throughout rehabilitation.

A "CLIENT-CENTRED ACTIVITIES OF DAILY LIVING" INTERVENTION FOR PERSONS WITH STROKE: ONE-YEAR FOLLOW-UP OF A RANDOMIZED CONTROLLED TRIAL

OBJECTIVEnTo compare changes regarding perceived participation, independence in activities of daily living (ADL) and life satisfaction between 3, 6 and 12 months after inclusion in a study of a client-centred ADL intervention and usual ADL intervention after stroke.nnnDESIGNnA multicentre randomized controlled trial.nnnMETHODSnSixteen rehabilitation units were randomly assigned to provide client-centred ADL intervention or usual ADL intervention. Eligible participants were persons ≤u20093 months after stroke who had been treated in a stroke unit, were dependent in two ADL domains, had not been diagnosed with dementia, and were able to understand instructions. Data collection was performed by blinded assessors. The primary outcome, perceived participation, was assessed with the Stroke Impact Scale 3.0, domain 8. The secondary outcomes, participation, independence in ADL, and life satisfaction, were assessed with validated instruments. For statistical power, 280 participants were required. Statistical analyses were performed on an intention-to-treat basis.nnnRESULTSnThere were no differences between the groups regarding changes in perceived participation, independence in ADL, or life satisfaction during the first 12 months. There was a trend towards a clinically meaningful positive change in perceived participation that favoured client-centred ADL intervention.nnnCONCLUSIONnFurther research is required to understand the benefits of client-centred interventions.

A 10-year follow-up of a population-based study of people with multiple sclerosis in Stockholm, Sweden: Changes in health-related quality of life and the value of different factors in predicting health-related quality of life

BACKGROUNDnHealth-related quality of life (HRQL) in people with multiple sclerosis (PwMS) is negatively affected compared to that of the general population. Cognitive impairment and depressive symptoms have been shown to predict worse HRQL in a short-term perspective. Considering the progressive nature of MS, it is essential to include the long-term (10 years) perspective of HRQL in PwMS.nnnOBJECTIVESnThe aim of this 10-year follow-up of a population-based sample of PwMS was to explore changes in and the predictive value of personal factors, degree of MS disability, depressive symptoms and cognitive impairment on HRQL.nnnMETHODSnData on personal and disease-specific factors, mood, and cognitive function was collected. Data on HRQL was collected, seen as a health profile with the Sickness Impact Profile, as a health index with the EuroQol 5D and as a single global question with the EQ Visual Analog Scale.nnnRESULTSnHRQL worsened over 10 years according to the health profile (Sickness Impact Profile Total and its physical dimension) and according to the health index. The effect sizes were small. HRQL assessed with the single global question remained unchanged. Depressive symptoms and cognitive impairment predicted worse HRQL.nnnCONCLUSIONnIn a 10-year perspective the HRQL with regard to its physical domain or when seen as a total health profile tends to get worse in PwMS. Yet, HRQL with regard to its psychosocial domain and with regard to PwMS self-rated health, remains stable. There is a potential for health-care professionals to decrease the impact of modifiable factors on HRQL in PwMS by identifying those with depressive symptoms and/or cognitive impairment and initiating evidence-based treatment as well as meeting the need for environmental facilitators aiming at reducing disability.

A population-based study of fall risk factors among people with multiple sclerosis in Stockholm county

OBJECTIVEnTo identify factors associated with increased likelihood of reporting a recent fall among people with multiple sclerosis. This study was exploratory in its intent to examine sense of coherence as a contextual influence on fall risk. The study also sought to confirm that variables previously identified as fall risk factors for people with multiple sclerosis persist when tested in a population-based sample.nnnDESIGNnThe study was cross-sectional and data was obtained in the context of a population-based study of people with multiple sclerosis living in Stockholm.nnnSUBJECTSnA total of 164 people with multiple sclerosis, age range 19-79 years.nnnMETHODSnData were gathered through established instruments. Key instruments utilized included the sense of coherence scale, the Lindmark Motor Capacity Assessments subscale for balance, and the 10-metre walking test. A logistic regression model examined factors associated with reporting a fall in the past 3 months.nnnRESULTSnOf the participants, 62 (38%) reported experiencing at least one fall in the past 3 months. Reduced walking speed, impaired balance, and weak sense of coherence were associated with falls in the past 3 months.nnnCONCLUSIONnThese findings underscore the importance of examining diverse and modifiable influences on fall risk, including walking speed, balance and sense of coherence, in future studies involving people with multiple sclerosis.