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

2019 ◽  
Author(s):  
Sophie Mirabell Lehnerer ◽  
Benjamin Hotter ◽  
Inken Padberg ◽  
Petra Knispel ◽  
Dike Remstedt ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Caregiver Burden ◽  
Exploratory Study ◽  
Unmet Needs ◽  
Social Needs ◽  
Stroke Patients ◽  
Cross Sectional ◽  
Degree Of Disability

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.

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

2019 ◽  
Author(s):  
Sophie Mirabell Lehnerer ◽  
Benjamin Hotter ◽  
Inken Padberg ◽  
Petra Knispel ◽  
Dike Remstedt ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Caregiver Burden ◽  
Exploratory Study ◽  
Unmet Needs ◽  
Social Needs ◽  
Stroke Patients ◽  
Cross Sectional ◽  
Degree Of Disability

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.

scholarly journals Social support and unmet social needs in life after stroke: a cross-sectional observational study

2019 ◽  
Author(s):  
Sophie Mirabell Lehnerer ◽  
Benjamin Hotter ◽  
Inken Padberg ◽  
Petra Knispel ◽  
Dike Remstedt ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Caregiver Burden ◽  
Unmet Needs ◽  
Social Needs ◽  
Stroke Patients ◽  
Cross Sectional ◽  
Degree Of Disability

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.

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 ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Caregiver Burden ◽  
Unmet Needs ◽  
Community Dwelling ◽  
Social Needs ◽  
Interquartile Range ◽  
Stroke Patients ◽  
Post Stroke

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.

scholarly journals Quality of life of cerebral palsy patients and their caregivers: A cross sectional study in a rehabilitation center Khartoum-Sudan (2014 – 2015)

2016 ◽  
Vol 07 (03) ◽  
pp. 355-361 ◽  
Author(s):  
Fadwa M. S. Mohammed ◽  
Suad M. Ali ◽  
Mutaz A. A. Mustafa
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Sociodemographic Factors ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Factors Affecting ◽  
Health Related ◽  
Degree Of Disability

ABSTRACT Background: Cerebral palsy (CP) is group of disorders characterized by long-term disabilities that affect the quality of life (QoL) of both patients and those caring for them. Objective: The objective of this study was to measure the QoL of CP patients and their caregivers and determine the factors affecting both of them. Methods: This was a cross-sectional facility-based study. 65 caregivers of children with CP aged 4–18 years completed a self-structured questionnaire. Descriptives of the samples were displayed, and logistic regression was used in the analysis. Results: The scores of overall QoL of both children and caregivers were low, however, variations were observed among different domains. Both health-related and sociodemographic factors were found to affect the QoL of children and caregivers. The increase in the degree of disability and presence of complications decreased the children QoL while the availability of health insurance improved it. Whereas the QoL of the caregiver was affected by his/her occupation, the degree of child disability did not affect it. Conclusions: This study showed that many feasible changes can be adopted to improve the QoL of CP patients and their caregivers.

Impact of infantile short bowel syndrome on long-term health-related quality of life: a cross-sectional study

2012 ◽  
Vol 47 (7) ◽  
pp. 1309-1316 ◽  
Author(s):  
Joanne F. Olieman ◽  
Corine Penning ◽  
Marten J. Poley ◽  
Elisabeth M.W.J. Utens ◽  
Wim C.J. Hop ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cross Sectional Study ◽  
Health Related Quality ◽  
Sectional Study ◽  
Cross Sectional ◽  
Short Bowel ◽  
Related Quality ◽  
Health Related

Is health-related quality of life between 90 and 180 days following stroke associated with long-term unmet needs?

2016 ◽  
Vol 25 (8) ◽  
pp. 2053-2062 ◽  
Author(s):  
N. E. Andrew ◽  
M. F. Kilkenny ◽  
N. A. Lannin ◽  
D. A. Cadilhac
Keyword(s):  
Quality Of Life ◽  
Unmet Needs ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Long-term Quality of Life After Decompressive Craniectomy in Severe Traumatic Brain Injury and Stroke

2021 ◽  
Author(s):  
Alex Vicino ◽  
Philippe Vuadens ◽  
Bertrand Léger ◽  
Charles Benaim
Keyword(s):  
Quality Of Life ◽  
Traumatic Brain Injury ◽  
Brain Injury ◽  
Acute Phase ◽  
Decompressive Craniectomy ◽  
Severe Traumatic Brain Injury ◽  
Full Time ◽  
Stroke Patients

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.

scholarly journals Quality of life among long-term survivors of advanced stage ovarian cancer: A cross-sectional approach

2017 ◽  
Vol 146 (1) ◽  
pp. 101-108 ◽  
Author(s):  
Susan K. Lutgendorf ◽  
Eileen Shinn ◽  
Jeanne Carter ◽  
Susan Leighton ◽  
Keith Baggerly ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ovarian Cancer ◽  
Advanced Stage ◽  
Cross Sectional ◽  
Long Term Survivors
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