Benjamin Hotter1, Inken Padberg1, Andrea Liebenau1, Petra Knispel1, Sabine Heel2, Diethard Steube3, Jörg Wissel4, Ian Wellwood5, Andreas Meisel1. 1. Center for Stroke Research Berlin and Department of Neurology, Charité University Hospital Berlin, Berlin, Germany. 2. Zentrum für ambulante Neuropsychologie und Verhaltenstherapie, Berlin, Germany. 3. Zentrum für ambulante Rehabilitation, Berlin, Germany. 4. Department Neurorehabilitation and Physical Therapy, Department of Neurology, Vivantes Hospital Spandau, Berlin, Germany. 5. Department of Public Health and Primary Care, Cambridge Institute of Public Health, University of Cambridge, Cambridge, UK.
Abstract
INTRODUCTION: Detailed data on the long-term consequences and treatment of stroke are scarce. We aimed to assess the needs and disease burden of community-dwelling stroke patients and their carers and to compare their treatment to evidence-based guidelines by a stroke neurologist. METHODS: We invited long-term stroke patients from two previous acute clinical studies (n = 516) in Berlin, Germany to participate in an observational, cross-sectional study. Participants underwent a comprehensive interview and examination using the Post-Stroke Checklist and validated standard measures of: self-reported needs, quality of life, overall outcome, spasticity, pain, aphasia, cognition, depression, secondary prevention, social needs and caregiver burden. RESULTS: Fifty-seven participants (median initial National Institutes of Health Stroke Scale score 10 interquartile range 4-12.75) consented to assessment (median 41 months (interquartile range 36-50) after stroke. Modified Rankin Scale was 2 (median; interquartile range 1-3), EuroQoL index value was 0.81 (median; interquartile range 0.70-1.00). The frequencies for disabilities in the major domains were: spasticity 35%; cognition 61%; depression 20%; medication non-compliance 14%. Spasticity (p = 0.008) and social needs (p < 0.001) had the strongest impact on quality of life. The corresponding items in the Post-Stroke Checklist were predictive for low mood (p < 0.001), impaired cognition (p = 0.015), social needs (p = 0.005) and caregiver burden (p = 0.031). In the comprehensive interview, we identified the following needs: medical review (30%), optimization of pharmacotherapy (18%), outpatient therapy (47%) and social work input (33%). CONCLUSION: These results suggest significant unmet needs and gaps in health and social care in long-term stroke patients. Further research to develop a comprehensive model for managing stroke aftercare is warranted.Clinical Trial Registration: clinicaltrials.gov NCT02320994.
INTRODUCTION: Detailed data on the long-term consequences and treatment of stroke are scarce. We aimed to assess the needs and disease burden of community-dwelling stroke patients and their carers and to compare their treatment to evidence-based guidelines by a stroke neurologist. METHODS: We invited long-term stroke patients from two previous acute clinical studies (n = 516) in Berlin, Germany to participate in an observational, cross-sectional study. Participants underwent a comprehensive interview and examination using the Post-Stroke Checklist and validated standard measures of: self-reported needs, quality of life, overall outcome, spasticity, pain, aphasia, cognition, depression, secondary prevention, social needs and caregiver burden. RESULTS: Fifty-seven participants (median initial National Institutes of Health Stroke Scale score 10 interquartile range 4-12.75) consented to assessment (median 41 months (interquartile range 36-50) after stroke. Modified Rankin Scale was 2 (median; interquartile range 1-3), EuroQoL index value was 0.81 (median; interquartile range 0.70-1.00). The frequencies for disabilities in the major domains were: spasticity 35%; cognition 61%; depression 20%; medication non-compliance 14%. Spasticity (p = 0.008) and social needs (p < 0.001) had the strongest impact on quality of life. The corresponding items in the Post-Stroke Checklist were predictive for low mood (p < 0.001), impaired cognition (p = 0.015), social needs (p = 0.005) and caregiver burden (p = 0.031). In the comprehensive interview, we identified the following needs: medical review (30%), optimization of pharmacotherapy (18%), outpatient therapy (47%) and social work input (33%). CONCLUSION: These results suggest significant unmet needs and gaps in health and social care in long-term stroke patients. Further research to develop a comprehensive model for managing stroke aftercare is warranted.Clinical Trial Registration: clinicaltrials.gov NCT02320994.
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