Identifying unmet needs in long-term stroke care using in-depth assessment and the Post-Stroke Checklist – The Managing Aftercare for Stroke (MAS-I) study

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 ¼ 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 noncompliance 14%. Spasticity (p ¼ 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 ¼ 0.015), social needs (p ¼ 0.005) and caregiver burden (p ¼ 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.

Social work support and unmet social needs in life after stroke: a cross-sectional exploratory study

“…Two-thirds of the clients contacting stroke service points in Berlin are caregivers [34]; this reveals the need to involve the nearest relative in evaluation and support. In the MAS-I study 24% of the caregivers reported moderate to high levels of stroke-related caregiver burden [11]. Several approaches have been suggested to close the gap between inpatient and outpatient care [52][53][54], however, social care has been understudied.…”

“…The present exploratory analysis is part of the MAS-Istudy, a cross-sectional exploratory study of post rehabilitation patient needs and caregiver burden after stroke [11]. The dataset represents a first step in a more complex project, aiming to gather information on unmet medical and social needs in the long-term aftercare for stroke in the outpatient setting.…”

“…The dataset represents a first step in a more complex project, aiming to gather information on unmet medical and social needs in the long-term aftercare for stroke in the outpatient setting. Briefly, stroke patients from two previous acute clinical studies were invited 2-3 years after the initial event to attend the outpatient department for a comprehensive interview and examination carried out by a trained neurologist and social worker using validated standard measures of selfreported needs, quality of life, overall outcome, spasticity, pain, aphasia, cognition, depression, secondary prevention, social needs and caregiver burden [11]. No financial incentive was provided, but transport was organized and paid for, if necessary.…”

“…Overall 57 patients were included in MAS-I [11]. As Table 1 shows, all patients were assessed for social needs using the Nikolaus-score with 10 patients needing socioeconomic support according to the score results.…”

“…Stroke patients are often affected by long-term disabilities with complex needs requiring a combination of medical, nursing, therapeutic and social interventions to address a wide range of concurrent symptoms such as paresis, spasticity, pain, aphasia, cognitive impairment and depression [1][2][3]. Several approaches have been proposed to provide comprehensive assistance to patients after stroke [4,5], however, many focus on promoting early return to the community rather than on-going care [6][7][8][9][10][11][12][13].…”