scholarly journals Stroke Survivor and Caregiver Perspectives on Post-Stroke Visual Concerns and Long-Term Consequences

2018 ◽  
Vol 2018 ◽  
pp. 1-8 ◽  
Author(s):  
Theresa M. Smith ◽  
Monique R. Pappadis ◽  
Shilpa Krishnan ◽  
Timothy A. Reistetter
Keyword(s):  
Quality Of Life ◽  
Community Support ◽  
Stroke Survivor ◽  
The United States ◽  
Stroke Survivors ◽  
Care Providers ◽  
Post Stroke ◽  
Vision Care

Approximately 800,000 people in the United States have a stroke annually. Up to two thirds of stroke survivors have some visual problems, which result in disability and can affect survivors’ overall rehabilitation outcomes. Although some post-stroke visual impairments can be corrected and respond well to intervention, ocular signs can be subtle and may not be recognized or reported by the stroke survivor but rather by a vigilant caregiver. The purpose of this study was to explore the post-stroke visual concerns and consequences expressed by stroke survivors and caregivers. This study employed a qualitative design using semistructured interviews conducted with a convenience sample of stroke survivors and caregivers recruited from either a community support group or skilled nursing and long-term care facilities. Interviews were recorded and transcribed verbatim. Comparative content analysis was used to identify vision-related themes by two independent coders. All research team members completed quality checking of coding. Twenty participants (11 stroke survivors and 9 caregivers) expressed visual concerns or consequences following stroke: (1) eye movement problems, (2) perceptual issues, and (3) consequences of vision problems or issues, which affected their daily life/quality of life. Stroke survivors and caregivers reported receiving vision care from (1) eye doctors, (2) occupational therapists, and (3) other healthcare professionals. All vision care providers need to be observant of potential post-stroke visual concerns. Stroke survivors should have a thorough vision evaluation to optimize their independence in everyday activities and quality of life.

Abstract TMP49: Depressive Symptoms After Stroke are Linked Longitudinally between Stroke Survivors and Their Family Caregivers

Stroke ◽  
2017 ◽  
Vol 48 (suppl_1) ◽  
Author(s):  
David L Roth ◽  
Orla C Sheehan ◽  
Jin Huang ◽  
J. D Rhodes ◽  
Suzanne E Judd ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Depressive Symptoms ◽  
Family Caregivers ◽  
Short Form ◽  
Well Being ◽  
Stroke Survivor ◽  
Stroke Survivors ◽  
Post Stroke ◽  
Clinically Significant

Background: Multiple previous investigations have documented persistent elevations in depressive symptoms after stroke for stroke survivors and for family caregivers. However, relatively few studies have examined both groups simultaneously, and none have tested for possible predictive linkages in longitudinal analyses. Methods: We collected interview data from 248 stroke survivors and their primary family caregivers who were enrolled in the Caring for Adults Recovering from the Effects of Stroke (CARES) project. CARES is an ancillary study to the national REasons for Geographic and Racial Differences in Stroke (REGARDS) study. Stroke survivors and caregivers were interviewed at 9-, 18-, 27- and 36-months after an adjudicated stroke event. Measures administered to both groups included the 20-item Center for Epidemiological Studies Depression Scale (CESD) and the 12-item Short Form Health Survey (SF-12) of health-related quality of life. Cross-lagged panel analyses were used to investigate linkages between stroke survivors and caregivers over time on these measures. Results: Clinically significant levels of depressive symptoms, as defined by a score of 16 or more on the CESD, were found for 17.0% of the stroke survivors and 13.7% of the caregivers at 9-months after stroke. Longitudinal models revealed that high stroke survivor depressive symptoms at 9-months post-stroke predicted increases in caregiver depressive symptoms at 18-months post-stroke (standardized adjusted regression coefficient = 0.18, p = 0.003). No longitudinal predictive effects were found for caregiver depressive symptoms on stroke survivor outcomes or for the SF-12 measures. Conclusions: Clinically significant levels of depressive symptoms were relatively rare 9-months after stroke in this population-based sample of stroke survivors and family caregivers. Stroke survivor depressive symptoms longitudinally predict caregiver depressive symptoms, but caregiver well-being was not found to longitudinally predict stroke survivor depression or quality of life. Treating elevated depressive symptoms in stroke survivors may also improve caregiver well-being.

scholarly journals Return to work after stroke – Feasibility of 6-year follow-up

2018 ◽  
Vol 82 (1) ◽  
pp. 27-37 ◽  
Author(s):  
Julie Phillips ◽  
Kathryn Gaffney ◽  
Margaret Phillips ◽  
Kate Radford
Keyword(s):  
Quality Of Life ◽  
Functional Ability ◽  
Feasibility Trial ◽  
Stroke Survivors ◽  
Full Time ◽  
Voluntary Work ◽  
Post Stroke

Introduction Little is known about long-term work sustainability of stroke survivors. A feasibility trial of early stroke specialist vocational rehabilitation had 32/46 (69.5%) participants available for follow-up at 12 months post stroke. Of these, 19/32 (59.4%) were in work. This study aims to determine the feasibility of longer-term follow-up and explore work status 6 years post stroke. Method Forty-eight participants fitting criteria for the feasibility trial were sent postal questionnaires measuring employment, income, mood, functional ability and quality of life, and were invited for interview to explore working 6 years after stroke. Ethical approval was obtained. Results Of the 48 participants, five (10.4%) had died; 19/43 (44.2%) responded. Fourteen were men; mean age 62 (24–78) years. Fourteen (74%) reported working (paid work n = 10, voluntary work n = 3, full-time education n = 1). Five had retired. Most (11/13) remained with preinjury employers. Half (8/15, 53%) reported decreased income since stroke. Compared to one year, median functional ability was marginally higher (extended activities of daily living 63 (IQR 8, range 32–66) to 60 (IQR 9, range 17–66)), but health-related quality of life was lower (EuroQuol Visual Analogue Scale mean 77.4 [SD 11] to 70.7 [SD14]). Six interviewees felt returning to work was the correct decision but struggled with invisible impairments. Conclusion This study suggests that long-term follow-up is feasible and that those who made a good recovery were more likely to respond. Work remains important to stroke survivors 6 years post stroke.

scholarly journals Inflammatory Signaling in Post-Stroke Fatigue and Depression

2018 ◽  
Vol 80 (3-4) ◽  
pp. 138-148 ◽  
Author(s):  
Hongmei Wen ◽  
Kristianna B. Weymann ◽  
Lisa Wood ◽  
Qing Mei Wang
Keyword(s):  
Quality Of Life ◽  
Independent Living ◽  
Stroke Rehabilitation ◽  
Sickness Behavior ◽  
The United States ◽  
Stroke Survivors ◽  
Post Stroke ◽  
Efficient Management ◽  
Inflammatory Processes

Background: In the United States, stroke continues to be the cause for long-term disability. Of the patients with a first stroke, up to 75% will experience post-stroke fatigue (PSF) in the first year following stroke. PSF is one of the most disabling symptoms in stroke survivors; it decreases quality of life, increases mortality, and is a barrier to stroke rehabilitation. Given the incidence of stroke and the prevalence and detrimental impact of PSF on quality of life, independent living, and overall survival, efficient management of PSF must be a priority in stroke rehabilitation. The cause of PSF remains unknown. The burden of fatigue in stroke survivors is influenced by other stroke-related symptoms, most notably post-stroke depression (PSD). It is well known that stroke induces a systemic inflammatory response that is the trigger for sickness behavior, of which fatigue and depression are predominant symptoms. Summary: To date, only a handful of studies have sought to explore the relationship between stroke-induced inflammation and PSF and PSD. In this review, we describe this evidence, highlight the strengths and weaknesses of these existing studies, and suggest further experiments that may further support the association between stroke-related inflammatory processes and stroke-related symptoms. Key Messages: The current concept and further research are important for a more specific therapeutic intervention for PSF and PSD.

scholarly journals LONG TERM PSYCHOLOGICAL CONSEQUENCES OF STROKE (OX-CHRONIC): A LONGITUDINAL STUDY OF COGNITION IN RELATION TO MOOD AND FATIGUE AFTER STROKE: PROTOCOL

2021 ◽  
Author(s):  
Nele Demeyere ◽  
Owen A Williams ◽  
Elise Milosevich ◽  
Evangeline Grace Chiu ◽  
Bogna Drazdowska ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Future Research ◽  
Stroke Survivors ◽  
Cognitive Profiles ◽  
Psychological Consequences ◽  
Cognitive Screening ◽  
Post Stroke ◽  
Domain Specific

Background: The long-term psychological consequences of stroke and how cognitive problems change over time after the first-year following stroke remain unclear. Particularly, trajectories of domain-specific and domain-general cognitive functions and how cognition interacts with mood, fatigue, and quality of life are not well described. Aims: To determine the prevalence, trajectories and wider impact of domain specific cognitive impairment in long term stroke survivors, in relation to mood, fatigue, and quality of life. Methods: Participants who previously took part in the Oxford Cognitive Screening study, completed the 6 month follow up with cognitive, mood, fatigue, and quality of life assessments and agreed to be contacted for future research will be recruited into OX-CHRONIC. The eligible cohort is between 2- and 9-years post stroke. Cognition will be assessed with a detailed neuropsychological battery, alongside questionnaire measures of mood, fatigue, activities of daily life and quality of life measures at two timepoints, one year apart. Additionally, medical records will be accessed to extract further clinical information about the stroke and patients may opt-in to wear an activity monitor for one week to provide fine-grained measures of sleep and activity. The study protocol and study materials were approved by the national ethics committee (REC Ref:19/SC/0520). Planned outputs: OX-CHRONIC will provide detailed data on the evolving cognitive profiles of stroke survivors over several years post-stroke. Estimates of long-term prevalence as well as the effect of changes in cognitive profiles on mood, fatigue and quality of life will be examined. This Study is funded by a Priority Programme Grant from the Stroke Association (SA PPA 18/100032).

scholarly journals Assessment and management of disease burden and quality of life in patients with hereditary angioedema: a consensus report

2021 ◽  
Vol 17 (1) ◽  
Author(s):  
Konrad Bork ◽  
John T. Anderson ◽  
Teresa Caballero ◽  
Timothy Craig ◽  
Douglas T. Johnston ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Hereditary Angioedema ◽  
Clinical Management ◽  
Disease Burden ◽  
The United States ◽  
Consensus Meeting ◽  
Consensus Statements ◽  
Consensus Report

Abstract Background Hereditary angioedema (HAE) is a rare disease characterized by unpredictable, potentially life-threatening attacks, resulting in significant physical and emotional burdens for patients and families. To optimize care for patients with HAE, an individualized management plan should be considered in partnership with the physician, requiring comprehensive assessment of the patient’s frequency and severity of attacks, disease burden, and therapeutic control. Although several guidelines and consensus papers have been published concerning the diagnosis and treatment of HAE, there has been limited specific clinical guidance on the assessment of disease burden and quality of life (QoL) in this patient population. Practical guidance is critical in supporting effective long-term clinical management of HAE and improving patient outcomes. The objective of this review is to provide evidence-based guidelines for an individualized assessment of disease burden and QoL in patients with HAE. Methods A consensus meeting was held on February 29, 2020, consisting of 9 HAE experts from the United States and Europe with extensive clinical experience in the treatment of HAE. Consensus statements were developed based on a preliminary literature review and discussions from the consensus meeting. Results Final statements reflect the consensus of the expert panel and include the assessment of attack severity, evaluation of disease burden, and long-term clinical management of HAE caused by C1-esterase inhibitor deficiency. Patient-reported outcome measures for assessing HAE attack severity and frequency are available and valuable tools; however, attack frequency and severity are insufficient markers of disease severity unless they are evaluated in the broader context of the effect on an individual patient’s QoL. QoL assessments should be individualized for each patient and minimally, they should address the interference of HAE with work, school, social, family, and physical activity, along with access to and burden of HAE treatment. Advances in HAE therapies offer the opportunity for comprehensive, individualized treatment plans, allowing patients to achieve minimal attack burden with reduced disease and treatment burden. Conclusion This consensus report builds on existing guidelines by expanding the assessment of disease burden and QoL measures for patients with HAE.

scholarly journals Patient Suffering in Chronic Digestive Diseases: Will Primary Care-Specialist Collaboration With Effective Interactive Communication and Integrative Medicine in the Plan of Care Improve Quality of Life?

2020 ◽  
Vol 7 (6) ◽  
pp. 989-993
Author(s):  
Andrew Thomas ◽  
Annie Thomas
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Health Care ◽  
Health Care Providers ◽  
The United States ◽  
Care Providers ◽  
Physician Visits ◽  
Digestive Diseases ◽  
Care Specialist

Acute and chronic digestive diseases are causing increased burden to patients and are increasing the United States health care spending. The purpose of this case report was to present how nonconfirmatory and conflicting diagnoses led to increased burden and suffering for a patient thus affecting quality of life. There were many physician visits and multiple tests performed on the patient. However, the primary care physician and specialists could not reach a confirmatory diagnosis. The treatment plans did not offer relief of symptoms, and the patient continues to experience digestive symptoms, enduring this burden for over 2 years. The central theme of this paper is to inform health care providers the importance of utilizing evidence-based primary care specialist collaboration models for better digestive disease outcomes. Consistent with patient’s experience, the authors propose to pilot/adopt the integrative health care approaches that are proven effective for treating digestive diseases.

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.

Short- and Long-term Cardiovascular Complications of Cancer Treatment: Overview for the Practicing Oncologist

2012 ◽  
pp. 553-554
Author(s):  
Chetan Shenoy ◽  
Gretchen Kimmick
Keyword(s):  
Quality Of Life ◽  
Cancer Treatment ◽  
The United States ◽  
Cardiovascular Complications ◽  
Complex Interaction ◽  
Comorbid Illness ◽  
Increase Risk ◽  
Short And Long Term

Overview: As new therapies improve survival from cancer, attention to comorbid illness and complications of therapy—both short- and long-term—become much more important to improving not only quality of life but also overall survival. Recognized for its importance as the leading cause of death in the United States, heart disease often coexists with cancer, and cancer treatment may increase risk and/or severity. In addition, there are well-recognized cardiovascular toxicities of cancer treatment, including not only cardiomyopathy, but also hypertension, hypercholesterolemia, and others. Oncologists and cardiologists are working closely to learn more about the complex interaction and to improve management and outcome for patients.

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