[Position paper on stroke aftercare of the German Stroke Society-Part 2: concept for a comprehensive stroke aftercare]. / Positionspapier Schlaganfallnachsorge der Deutschen Schlaganfall-Gesellschaft ­ Teil 2: Konzept für eine umfassende Schlaganfallnachsorge.

Long-term management after stroke has not been standardized in contrast to acute and rehabilitative stroke care. The fragmented outpatient sector of healthcare allows a high degree of flexibility but also variability in the quality of care provided. The commission on long-term stroke care of the German Stroke Society developed a concept on how to provide standardized multiprofessional long-term stroke care with a focus on patient-centered comprehensive care. We propose a diagnostic work-up in stages, with an initial patient-reported screening, followed by an adapted in-depth assessment of affected domains. This includes internistic domains (management of risk factors) and also genuine neurological domains (spasticity, cognitive deficits etc.) that must be considered. This information is then merged with patient expectations and prioritization to a standardized treatment plan. Special challenges for the implementation of such a comprehensive care system are the intersectoral and intrasectoral communication between healthcare providers, patients and relatives, the need to create a compensation system for providers and the establishment of appropriate quality management services. Digital health applications are helpful tools to provide aspects of diagnostics, treatment and communication in long-term stroke care.

Unmet Need for Social and Emotional Support and Lack of Recalled Screening Is Associated with Depression in the Long-Term Course After Stroke.

PURPOSE: Details on adequate care and prevalence of depression in long-term stroke aftercare are limited. We aimed to determine long-term depression rates after stroke and to test for an association between depression and inadequate screening, socio-economic complications and lack of sub-optimal care. PATIENTS AND METHODS: In this cross-sectional study, 57 patients were re-invited into the clinic 2-3 years after stroke. Patients were interviewed about recalled screening concerning depression and unmet needs. Depression, the patient's social situation, and confounders were assessed by standardized scores. RESULTS: In our study, 20% (n = 11) of patients were classified as depressed by the HDRS-17 score result. However, only 36% of all patients recalled to have been previously screened for depression and only 43% of those patients also recalled out-patient screening. Patients classified as depressed reported significantly lower recalled screening rates (9% vs 43%; p = 0.036) and higher rates of self-reported unmet need with emotional problems (72% vs 18%; p < 0.001). Depression in our study was further associated with a worse socio-economic situation, fewer social contacts, unmet needs with regard to emotional problems and higher rates of recommendations to apply for additional social support. CONCLUSION: Our data suggest that systematic out-patient screening for depression is lacking in stroke aftercare. Furthermore, the high rate of unmet emotional needs, the poor socio-economic situation and the higher rates of recommendations for social counselling and application for benefits suggest an undersupply of care in the out-patient setting that is more prominent in patients with depression and warrants further studies to investigate the underlying causes.

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

BACKGROUND: Stroke patients are often affected by long-term disabilities with needs concerning social issues. There is relatively little consideration of social recovery of patients and the support required to return to work, receive social benefits, participate in daily life activities, maintain contact with family and friends and to organize financial affairs. In our study we aimed to investigate if existing tools record social needs adequately. We analyzed the current provision of social support provided in long-term care after stroke and whether unmet social needs were associated with quality of life, caregiver burden, overall function and degree of disability. METHODS: Our analysis is part of the Managing Aftercare of Stroke study (MAS-I), a cross-sectional exploratory study of patient needs 2-3 years after initial stroke. Assessment tools included the Nikolaus-score (social situation), the EuroQoL (quality of life), the German Burden Scale for Family Caregivers (caregiver burden), the modified Rankin Scale (disability / dependence), Stroke Impact Scale (function and degree of disability) and the Stroke Survivor Needs Questionnaire (unmet needs). RESULTS: Overall 57 patients were included in MAS-I, with ten patients classified in urgent need of socio-economic support according to the Nikolaus-score. Patients with lower than normal Nikolaus-score had a higher degree of disability. Thirty percent of all patients had never received professional social support. Social worker contact happened mostly during the stay in acute hospital or rehabilitation institution. Only four patients (11%) reported long-term support after discharge. Apart from social worker contact during acute care, 43% of patients had unmet needs in the long-term aftercare. Forty percent of all patients included in MAS-I were recommended for social work intervention after an in-depth analysis of their situation. Finally, we saw that unmet social needs were associated with lower quality of life and higher caregiver burden. CONCLUSIONS: Our data suggest significant unmet needs in social care in long-term stroke patients. Screening tools for unmet social needs such as the Nikolaus-score do not holistically report patients' needs. TRIAL REGISTRATION: Clinicaltrials.Gov NCT02320994 . Registered 19 December 2014 (retrospectively registered).

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.

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.

Social work after stroke: identifying demand for support by recording stroke patients' and carers' needs in different phases after stroke.

BACKGROUND: Previous studies examining social work interventions in stroke often lack information on content, methods and timing over different phases of care including acute hospital, rehabilitation and out-patient care. This limits our ability to evaluate the impact of social work in multidisciplinary stroke care. We aimed to quantify social-work-related support in stroke patients and their carers in terms of timing and content, depending on the different phases of stroke care. METHODS: We prospectively collected and evaluated data derived from a specialized "Stroke-Service-Point" (SSP); a "drop in" center and non-medical stroke assistance service, staffed by social workers and available to all stroke patients, their carers and members of the public in the metropolitan region of Berlin, Germany. RESULTS: Enquiries from 257 consenting participants consulting the SSP between March 2010 and April 2012 related to out-patient and in-patient services, therapeutic services, medical questions, medical rehabilitation, self-help groups and questions around obtaining benefits. Frequency of enquiries for different topics depended on whether patients were located in an in-patient or out-patient setting. The majority of contacts involved information provision. While the proportion of male and female patients with stroke was similar, about two thirds of the carers contacting the SSP were female. CONCLUSION: The social-work-related services provided by a specialized center in a German metropolitan area were diverse in terms of topic and timing depending on the phase of stroke care. Targeting the timing of interventions might be important to increase the impact of social work on patient's outcome.