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The association of stroke severity with health-related quality of life in survivors of acute cerebrovascular disease and their informal caregivers during the first year post stroke: a survey study.

ABSTRACT: PURPOSE:To describe the health-related quality of life (HRQoL) of caregivers and survivors of transient ischaemic attack (TIA) and stroke during one year post discharge in comparison to age- and sex-matched population norms; and to analyse the association of initial stroke severity, measured by a routinely used stroke-specific scale, on subsequent HRQoL of caregivers and survivors. METHODS:Cohort of hospitalized patients with TIA and stroke discharged alive from a large university hospital in Norway, and their informal caregivers. Questionnaires at 3 and 12 months post discharge were filled out by caregivers (n = 320 and n = 326, respectively) and survivors (n = 368 and n = 383, respectively). Multivariable linear regression analyses tested associations between initial stroke severity (National Institutes of Health Stroke Scale, NIHSS) and HRQoL (EQ-5D-3L) in caregivers and survivors. RESULTS:Caregivers of survivors with TIA or stroke did not report lower HRQoL than matched norms. There was some evidence of an association of the NIHSS with caregiver HRQoL at 3 months only (age-sex-adjusted coefficient - 0.01, p = 0.008), however, this was attenuated after additional adjustments. Survivors with stroke, but not TIA, reported lower HRQoL than population norms at both time points. There was a negative association between higher NIHSS scores and survivors' HRQoL; fully adjusted coefficient - 0.01 at both time points (p = 0.001). CONCLUSION:The informal caregivers and survivors with TIA did not report lower than expected HRQoL. Increasing stroke severity was associated with decreasing HRQoL among survivors, but had limited predictive value among caregivers. Other factors may therefore be better indicators of 'at risk' caregivers.

SUBMITTER: Labberton AS

PROVIDER: S-EPMC7561590 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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The association of stroke severity with health-related quality of life in survivors of acute cerebrovascular disease and their informal caregivers during the first year post stroke: a survey study.

Labberton Angela S AS Augestad Liv Ariane LA Thommessen Bente B Barra Mathias M

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation 20200509 10

<h4>Purpose</h4>To describe the health-related quality of life (HRQoL) of caregivers and survivors of transient ischaemic attack (TIA) and stroke during one year post discharge in comparison to age- and sex-matched population norms; and to analyse the association of initial stroke severity, measured by a routinely used stroke-specific scale, on subsequent HRQoL of caregivers and survivors.<h4>Methods</h4>Cohort of hospitalized patients with TIA and stroke discharged alive from a large university ...[more]

PMID: 32388786

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Project description:BackgroundWeb-based interventions have shown promise for chronic disease management but have not been widely applied to populations with stroke. Existing barriers may inhibit the adoption of web-based interventions among stroke survivors and necessitate the involvement of informal caregivers. However, limited information is available on internet accessibility and usability among stroke survivors and their caregivers.ObjectiveThis study aims to investigate internet access and usage in a cohort of stroke survivors and their caregivers.MethodsA cross-sectional survey was conducted with 375 participants (248 stroke survivors and 127 caregivers). Descriptive statistics were generated using cross-tabulation. Comparisons with categorical data were conducted using the chi-square test, whereas the Mann-Whitney U test was used for comparisons involving ordinal variables.ResultsOverall, 86.1% (323/375) of the participants reported having internet access. Caregivers were more likely than stroke survivors to access the internet (N=375, χ21=18.5, P<.001) and used text messaging (n=321, χ21=14.7, P<.001). Stroke survivors and caregivers with internet access were younger than stroke survivors and caregivers without internet access. The highest number of participants who reported internet access were non-Hispanic White. Smartphones were the most common devices used to access the internet. Email was the most common type of internet usage reported. Patients who survived for >12 months after a stroke reported higher internet access than those who survived <3 months (P<.001). The number of hours per week spent using the internet was higher for caregivers than for stroke survivors (P<.001).ConclusionsFuture feasibility and acceptability studies should consider the role of the informal caregiver, participant age, race and ethnicity, the use of smartphone apps, email and text correspondence, and the amount of time elapsed since the stroke event in the design and implementation of web-based interventions for populations with stroke.

Project description:BackgroundDepressive symptoms are a significant psychological complication of stroke, impacting both survivors and informal caregivers of survivors. Randomized controlled trials are needed to determine optimal non-pharmacological strategies to prevent or ameliorate depressive symptoms in stroke survivors and their informal caregivers.MethodsA prospective, randomized, parallel-group, single-center, feasibility study. Participants were assigned to a 4-week meditation intervention or expressive writing control group. The intervention comprised four facilitator-led group meditation sessions, one session per week and building upon prior session(s). Descriptive statistics were used to examine the proportion of eligible individuals who enrolled, retention and adherence rates, and the proportion of questionnaires completed. Data were collected at baseline, immediately after the 4-week intervention period, and 4 and 8 weeks after the intervention period. Secondary analysis tested for changes in symptoms of depression (Center for Epidemiologic Studies-Depression [CES-D]), anxiety [State-Trait Anxiety Inventory for Adults (STAI)], and pain (Brief Pain Inventory-Short Form) in the intervention group via paired t tests. Linear mixed models were used to compare longitudinal changes in the measures between the groups. Intervention and trial design acceptability were preliminary explored.ResultsSeventy-one (77%) individuals enrolled and 26 (37%) completed the study (baseline and 8-week post-intervention visits completed). Forty-two (66%) participants completed baseline and immediate post-intervention visits. Mean questionnaire completion rate was 95%. The median meditation group session attendance rate for the intervention group was 75.0%, and the mean attendance rate was 55%. Non-significant reductions in CES-D scores were found. Paired t tests for stroke survivors indicated a significant reduction from baseline through week 8 in BPI-sf severity scores (p = 0.0270). Repeated measures analysis with linear mixed models for informal caregivers indicated a significant reduction in in STAI-Trait scores (F [3,16.2] = 3.28, p = 0.0479) and paired t test showed a significant reduction from baseline to week 4 in STAI-Trait scores (mean = - 9.1250, 95% CI [- 16.8060 to 1.4440], p = 0.0262). No between-group differences were found.ConclusionsFuture trials will require strategies to optimize retention and adherence before definitive efficacy testing of the meditation intervention.Trial registrationClinicalTrials.gov Identifier: NCT03239132. Registration date: 03/08/2017.

Project description:PurposeWe aimed to describe the intensity of care and its consequences on informal caregivers of stroke survivors according to the degree of care receivers' functional dependence for activities of daily living; and to identify the factors associated with caregivers' care-related quality of life.MethodsCross-sectional analysis of prospective data collected in a cost-utility study alongside the RACECAT trial in Catalonia (Spain). One-hundred and thirty-two care receiver-caregiver pairs were interviewed six months after stroke. Functional dependence for activities of daily living was measured with the Barthel index. We assessed caregivers care-related quality of life with the CarerQoL, which measures seven dimensions of subjective burden (CarerQoL-7D) and a happiness score (CarerQoL-VAS). We evaluated the association between characteristics of informal caregivers, characteristics of care receivers, and intensity of care, and the caregiver's care-related quality of life (subjective burden and happiness) in a hypothesized model using a structural equation model.ResultsOf the 132 caregivers, 74,2% were women with an average age of 59.4 ± 12.5 years. The 56.8% of them were spouses. The care intensity ranged from a mean of 24h/week for mild to 40h/week for severe dependence. Most caregivers (76.3%) were satisfied with their task, regardless of dependence, but showed increasing problems in caring for severely dependent persons. Being a woman (coeff. -0.23; 95%CI: -0.40, -0.07), spending more time in care tasks (coeff -0.37; -0.53, -0.21) and care receiver need of constant supervision (coeff 0.31; -0.47, -0.14) were associated with higher burden of care, irrespective of the degree of dependence. Caregiver burden (coeff 0.46; 0.30-0.61) and care receiver anxiety or depression (coeff -0.19; -0.34, -0.03) were associated with lower caregiver happiness.ConclusionsThe findings suggest the importance of developing mainly two types of support interventions for caregivers: respite and psychosocial support. Especially for women with high caring burden and/or caring for persons with high levels of anxiety or depression.

Project description:BackgroundCritical illness and the problems faced after ICU discharge do not only affect the patient, it also negatively impacts patients' informal caregivers. There is no review which summarizes all types of burden reported in informal caregivers of ICU survivors. It is important that the burdens these informal caregivers suffer are systematically assessed so the caregivers can receive the professional care they need. We aimed to provide a complete overview of the types of burdens reported in informal caregivers of adult ICU survivors, to make recommendations on which burdens should be assessed in this population, and which tools should be used to assess them.MethodWe performed a systematic search in PubMed and CINAHL from database inception until June 2014. All articles reporting on burdens in informal caregivers of adult ICU survivors were included. Two independent reviewers used a standardized form to extract characteristics of informal caregivers, types of burdens and instruments used to assess these burdens. The quality of the included studies was assessed using the Newcastle-Ottawa and the PEDro scales.ResultsThe search yielded 2704 articles, of which we included 28 in our review. The most commonly reported outcomes were psychosocial burden. Six months after ICU discharge, the prevalence of anxiety was between 15% and 24%, depression between 4.7% and 36.4% and post-traumatic stress disorder (PTSD) between 35% and 57.1%. Loss of employment, financial burden, lifestyle interference and low health-related quality of life (HRQoL) were also frequently reported. The most commonly used tools were the Hospital Anxiety and Depression Scale (HADS), Centre for Epidemiological Studies-Depression questionnaire, and Impact of Event Scale (IES). The quality of observational studies was low and of randomized studies moderate to fair.ConclusionsInformal caregivers of ICU survivors suffer a substantial variety of burdens. Although the quality of the included studies was poor, there is evidence that burden in the psychosocial field is most prevalent. We suggest screening informal caregivers of ICU survivors for anxiety, depression, PTSD, and HRQoL using respectively the HADS, IES and Short Form 36 and recommend a follow-up period of at least 6 months.

Project description:ObjectivesThe needs and rights awareness of stroke survivors have not been reported in China. This study investigated the needs and rights awareness of stroke survivors and caregivers in Tianjin, China.SettingA survey launched by the World Stroke Organization was conducted in Tianjin, China. The questionnaire included demands for psychological support, treatment and care, social support and information. Stroke survivors and their caregivers were interviewed face to face for the questionnaire. Between June 2014 and February 2015, stroke survivors were invited to participate if they were more than 18 years old and had experienced a stroke. Exclusion criteria were patients who had disorders of consciousness, significant cognitive impairment, aphasia, communication difficulties or psychiatric disorders. Only caregivers who were family members of the patients were chosen. Paid caregivers were excluded.ParticipantsTwo hundred and forty-eight stroke survivors and 212 caregivers were enrolled.Primary outcome measuresThe correlations between levels of needs and potential effect factors were analysed. Levels of different needs were compared by age, gender and time since stroke.ResultsAmong the cohort, 95.6% stroke survivors and 92.5% caregivers agreed to each question in the questionnaire. The participants prioritised the needs for psychological support (99.4%), treatment and care (98.6%), social support (98%) and information (96.2%). The total score was negatively correlated with age (r=-0.255, p<0.01). Patients below 65 years old had higher scores than those 65 years or older (p<0.01), while male patients had higher scores than female patients (p<0.01).ConclusionsThe needs for psychological and emotional support, individual treatment, social support and information about stroke were eagerly reported by most survivors. The Bill of Rights must be recognised by the Chinese society, providing appropriate stroke care to every patient to optimise stroke outcomes.

Dataset Information

The association of stroke severity with health-related quality of life in survivors of acute cerebrovascular disease and their informal caregivers during the first year post stroke: a survey study.

Publications

The association of stroke severity with health-related quality of life in survivors of acute cerebrovascular disease and their informal caregivers during the first year post stroke: a survey study.

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