scholarly journals 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

2018 ◽  
Vol 3 (3) ◽  
pp. 237-245 ◽  
Author(s):  
Benjamin Hotter ◽  
Inken Padberg ◽  
Andrea Liebenau ◽  
Petra Knispel ◽  
Sabine Heel ◽  
...  

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.

2019 ◽  
Author(s):  
Sophie Mirabell Lehnerer ◽  
Benjamin Hotter ◽  
Inken Padberg ◽  
Petra Knispel ◽  
Dike Remstedt ◽  
...  

Abstract 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 observational 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.


2019 ◽  
Author(s):  
Sophie Mirabell Lehnerer ◽  
Benjamin Hotter ◽  
Inken Padberg ◽  
Petra Knispel ◽  
Dike Remstedt ◽  
...  

Abstract 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.


2019 ◽  
Author(s):  
Sophie Mirabell Lehnerer ◽  
Benjamin Hotter ◽  
Inken Padberg ◽  
Petra Knispel ◽  
Dike Remstedt ◽  
...  

Abstract 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.


Stroke ◽  
2001 ◽  
Vol 32 (suppl_1) ◽  
pp. 361-361
Author(s):  
Sue-Min Lai Dr ◽  
Stephanie Studenski Dr ◽  
Pamela W Duncan Dr ◽  
Subashan Perera Dr

P123 Purpose: The purpose of this study was to determine the discriminant validity of the Stroke Impact Scale (SIS) by comparing function and quality of life in stroke patients to assessments from stroke-free community dwelling elderly. Methods: The SIS was administered at 90 to 120 days post-stroke to subjects who participated in the Kansas City Stroke Registry (KCSR). The same impact scale was also administered cross-sectionally to community dwelling elderly who were recruited from primary care clinics for participation in an ongoing prospective study of health and function (Merck). All subjects were queried for responses to 64 items of the SIS including eight domains: strength, memory and thinking, emotion, communication, ADL/IADL, mobility, upper extremity, and social participation. Regression analyses were used to examine differences between stroke patients and stroke-free elderly in each of the eight SIS domains while controlling for demographics and comorbidities. Results: One hundred and sixty KCSR subjects and two hundred and forty-three subjects from the Merck study were included in the present analysis. The mean ages were 73±10.1 and 74±5.1, respectively. Gender and race were similar in both groups. The 90-days post-stroke mean Barthel ADL was 80±23 in the stroke patients. Mean scores of all 8 SIS domains were significantly lower in stroke patients than those in the stroke-free community dwelling elderly even after controlling for differences in age and comorbidities (all p values < 0.0001). Mean scores of the 7 SIS domains (except strength), even in stroke patients who had Barthel ADL > 90 at 90-days post-stroke, remained lower than those in the stroke-free community dwelling elderly (p values < 0.01). Conclusion: The SIS was able to discriminate well between stroke patients with disability and stroke-free elderly subjects. Patients who had recovered basic ADLs continued to have residual disability and impaired quality of life when compared to non-stroke patients.


2019 ◽  
Vol 7 (3) ◽  
pp. 232-237
Author(s):  
Hana Larasati ◽  
Theresia Titin Marlina

Background: stroke is a disorder of nervous system function that occurs suddenly and is caused by brain bleeding disorders that can affect the quality of life physical dimensions, social dimensions, psychological dimensions, environmental dimensions. Based on the result of Lumbu study (2015) the number of samples were 71 people collected data using the (WHOQOL-BREF). There were 56 people (78,9%) had the poor quality of life of post stroke. The mean of post-stroke quality of life domain was physical domain (45,27%), psychological domain (49,87%), social relations domain (48,15%) and environmental domain (50.01%). Objective: the purpose of the study was know the quality of life of the stroke patients in Outpatient Polyclinic of Private Hospital in Yogyakarta. Methods: used descriptive quantitative by using questionnaire test of purposive sampling system based on patients who have been affected of ischemic or hemorrhagic stroke before, number 30 respondents. Result: quality of life of stroke patient of medium physical dimension (67%), psychological dimension (71%), social dimension (67%), dimension good environment (63%). Conclusion: the quality of life of stroke patients of physical dimension, psychological dimension, and moderate social dimension, while the quality of life of stroke patients were good environmental dimension.   Keywords: Hemorrhagic stroke, ischemic stroke, quality of life


2016 ◽  
Vol 25 (8) ◽  
pp. 2053-2062 ◽  
Author(s):  
N. E. Andrew ◽  
M. F. Kilkenny ◽  
N. A. Lannin ◽  
D. A. Cadilhac

2021 ◽  
Author(s):  
Alex Vicino ◽  
Philippe Vuadens ◽  
Bertrand Léger ◽  
Charles Benaim

Abstract PurposeDecompressive craniectomy (DC) can rapidly reduce intracranial pressure and save lives in the acute phase of severe traumatic brain injury (TBI) or stroke, but little is known about the long-term outcome after DC. We evaluated quality of life (QoL) a few years after DC for severe TBI/stroke.MethodsThe following data were collected for stroke/TBI patients hospitalized for neurorehabilitation after DC: 1) at discharge, motor and cognitive sub-scores of the Functional Independence Measure (motor-FIM [score 13-91] and cognitive-FIM [score 5-35]) and 2) more than 4 years after discharge, the QOLIBRI health-related QoL (HR-QoL) score (0-100; <60 representing low or impaired QoL) and the return to work (RTW: 0%, partial, 100%)ResultsWe included 88 patients (66 males, median age 38 [interquartile range 26.3-51.0], 65 with TBI/23 stroke); 46 responded to the HR-QoL questionnaire. Responders and non-responders had similar characteristics (age, sex, functional levels upon discharge). Median motor-FIM and cognitive-FIM scores were 85/91 and 27/35, with no significant difference between TBI and stroke patients. Long-term QoL was borderline low for TBI patients and within normal values for stroke patients (score 58.0[42.0-69.0] vs. 67.0[54.0-81.5], p=0.052). RTW was comparable between the groups (62% full time).ConclusionWe already knew that DC can save the lives of TBI or stroke patients in the acute phase and this study suggests that their long-term quality of life is generally quite acceptable.


2009 ◽  
Vol 285 ◽  
pp. S117
Author(s):  
M. Sieminski ◽  
K. Chwojnicki ◽  
A. Ossowska ◽  
L. Wierucki ◽  
T. Zdrojewski ◽  
...  

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