Associations between quality of life and socioeconomic factors, functional impairments and dissatisfaction with received information and home-care services among survivors living at home two years after stroke onset.
ABSTRACT: Quality of life (QoL) assessment is important when monitoring over time the recovery of stroke-survivors living at home. This study explores the associations between QoL and socioeconomic factors, functional impairments and self-reported dissatisfaction with received information and home-care services among survivors two years after stroke onset. This problem remains partially addressed though optimal information and services may improve survivors' QoL.Stroke-survivors admitted to all hospitals in Luxembourg 18 months or more previously were identified using the only care-expenditure-reimbursement national system database. The clinical diagnosis was confirmed. Ninety four patients aged 65 years and living at home were interviewed to gather socioeconomic characteristics, functional impairments, dissatisfaction with information and home-care services, and QoL (using the Newcastle Stroke-Specific QoL, newsqol) assessing 11 domains. Data were analyzed using multiple linear regression models.About 50% of survivors had low education and lower income. Functional impairments were common: sensory (45%), motor (35%), memory (32%), language (31%), and vision (20%). Survivors with education (<12th grade) or lower income had low values for most newsqol domains (sex-age-adjusted regression coefficient saRC, i.e. mean difference, between -23 and -8). Patients who were working had better values for pain, mental feelings and sleep domains than did retired people (saRC between -3.9 and 4.2). Various functional impairments were associated with markedly low values of nearly all domains (saRC between -33.5 and -7.5) and motor, language, memory and sensory impairments had the highest impact. The survivors' perceived QoL was markedly low, especially for the domains of interpersonal relationship, sleep, cognition, mental feelings, and pain. Various QoL domains were strongly related to dissatisfaction with information about stroke and its consequences/changes over time, accuracy of information obtained, help received, coordination between services, and the possibility of receiving help when necessary (saRC reaching -30).Stroke-survivors had major alterations in QoL that reflected depressive symptoms, which should be appropriately treated. These findings may help with the development of public policies aiming at improving QoL among stroke survivors. The newsqol could be used routinely to measure the recovery of survivors over time and their needs in terms of information, help and care services.
Project description:BACKGROUND:Family caregivers of aged stroke survivors face challenging difficulties such as the lack of support and the knowledge and skills to practice home care. These aspects negatively influence the caregivers' burden and quality of life, the use of health services, and hospital readmissions of the stroke survivor. The aim of this research is to describe an educational intervention focused on family caregivers of stroke survivors for the development of home care in the south of Brazil. METHODS:A randomized clinical trial with 48 family caregivers of stroke survivors will be recruited and divided into two groups: 24 in the intervention group and 24 in the control group. The intervention will consist of the systematic follow-up by nurses who will perform three home visits over a period of 1 month. The control group will not receive the visits and will have the usual care guidelines of the health services. Primary outcomes: burden and quality of life of the caregiver. SECONDARY OUTCOMES:functional capacity and readmissions of the stroke survivors; the use of health services of the stroke survivors and their family caregivers. Outcomes will be measured 2 months after discharge. The project was approved in April 2016. DISCUSSION:This research offers information for conducting educational intervention with family caregivers of stroke survivors, presenting knowledge so that nurses can structure and plan the actions aimed at the education of the family caregiver. It is expected that the educational intervention will contribute to reducing caregiver burden and improving their quality of life, as well as avoiding readmissions and inadequate use of health services by stroke survivors. TRIAL REGISTRATION:ClinicalTrials.gov, ID: NCT02807012 . Registered on 3 June 2016. Name: Nursing Home Care Intervention Post Stroke (SHARE).
Project description:There is very little information about the quality of life (QOL) of stroke survivors in LMIC countries with underdeveloped non communicable health infrastructures, who bear two thirds of the global stroke burden.We used a sequential mix methods approach. First, a quantitative analytical cross-sectional study was conducted on 700 participants, who constituted 350 stroke survivor and their caregiver dyads. QOL of stroke survivor was assessed via Stroke Specific Quality of Life Scale (SSQOLS) whereas QOL of caregivers was assessed through RAND-36. In addition; we assessed complications, psychosocial and functional disability of stroke survivors. Following this quantitative survey, caregivers were qualitatively interviewed to uncover contextually relevant themes that would evade quantitative surveys. Multiple linear regression technique was applied to report adjusted ?-coefficients with 95% C.I.The QOL study was conducted from January 2014 till June 2014, in two large private and public centers. At each center, 175 dyads were interviewed to ensure representativeness. Median age of stroke survivors was 59(17) years, 68% were male, 60% reported depression and 70% suffered post-stroke complications. The mean SSQOLS score was 164.18?±?32.30. In the final model severe functional disability [adj? -33.77(-52.44, -15.22)], depression [adj?-23.74(-30.61,-16.82)], hospital admissions [adj?-5.51(-9.23,-1.92)] and severe neurologic pain [adj? -12.41(-20.10,-4.77)] negatively impacted QOL of stroke survivors (P?<?0.01). For caregivers, mean age was 39.18?±?13.44 years, 51% were female and 34% reported high stress levels. Complementary qualitative study revealed that primary caregivers were depressed, frustrated, isolated and also disappointed by health services.The QOL of Stroke survivors as reported by SSQOLS score was better than compared to those reported from other LMIC settings. However, Qualitative triangulation revealed that younger caregivers felt isolated, depressed, overwhelmed and were providing care at great personal cost. There is a need to develop cost effective holistic home support interventions to improve lives of the survivor dyad as a unit.NCT02351778 (Registered as Observational Study).
Project description:OBJECTIVES:To synthesise evidence on longer term unmet needs perceived by stroke survivors, and psychometric properties of the tools used to evaluate unmet care needs after stroke. DESIGN:Systematic review. SETTING:Community or patients' home. PARTICIPANTS:Stroke survivors. METHODS:We searched PubMed, PsycINFO, CINAHL, EMBASE from inception to 31 March 2018 to identify survey studies that evaluated unmet needs perceived by stroke survivors after hospital discharge. Reported unmet needs were categorised under three domains: body functioning, activity/participation and environmental factors. Ranges of prevalence rates of unmet needs reported in studies were presented. RESULTS:We included 19 eligible studies, with considerable heterogeneity in patients, survey methods and results. Psychometric properties of two stroke-specific tools were formally evaluated, indicating their moderate reliability and content/concurrent validity. The median number of reported unmet needs per stroke survivor was from two to five, and the proportion of stroke survivors with at least one unmet needs was on average 73.8% (range 19.8%- 91.7%). Unmet needs perceived by stroke survivors included 55 records of unmet body functioning needs, 47 records of unmet activities/participatory needs and 101 records of unmet environmental needs. Common unmet service needs were unmet information needs (3.1%- 65.0%), transport (5.4%-53.0%), home help/personal care (4.7%-39.3%) and therapy (2.0%-35.7%). CONCLUSIONS:The prevalence of unmet long-term needs is high among stroke survivors, and there is considerable heterogeneity in type and frequency of specific unmet needs. More research is required to link regular assessment of long-term unmet needs of stroke survivors with the provision of cost-effective patient-centred health and social care services.
Project description:Many stroke survivors require care from informal carers such as family members and friends who may experience adverse impacts. This study aimed to qualitatively explore the unmet needs of carers of stroke survivors, and their preferences for interventions and support services. We conducted 24 semi-structured, qualitative interviews with carers of stroke survivors from the Hunter region, Australia. Inductive thematic analysis was used in the context of a needs-led framework to identify key themes of their unmet needs. Key unmet needs identified by carers of stroke survivors in this study centred on four main themes: (1) social relationships and support; (2) adequacy of information; (3) taking care of oneself; and (4) accessing appropriate services. Carers of stroke survivors desired the development of services which provide connectivity to information, training, education and community support; and inclusion in a community with social relationships and other carers of stroke survivors. Ongoing unmet needs often result in adverse health and quality of life outcomes for carers of stroke survivors. Co-designed programs and resources for carers, particularly relating to unmet needs in social, information, self-care and service access domains are needed.
Project description:BACKGROUND: Life satisfaction (LS) of cerebrovascular disease survivors and their family caregivers may relate to socioeconomic factors, impaired functions, health-related quality of life (QoL), but their respective influences remain unclear. This study assessed, two years post-stroke onset, the effects of these factors on patients' LS and family caregivers' LS in Luxembourg. METHODS: All stroke patients admitted to all hospitals in Luxembourg were identified by the 'Inspection Général de la Sécurité Sociale' using the only national system database for care expenditure reimbursement. Their diagnosis was confirmed by medical investigator. The sample included ninety four patients living at home having given consent (mean age 65.5 years) and sixty two main caregivers (mean age 59.3 years). Questionnaires were completed during face-to-face interviews. LS was assessed via European single question (range 1-10), survivors' QoL via Newsqol (11 dimensions), and caregivers' QoL via Whoqol-bref (4 domains) (range 0-100). Data were analysed using multiple regression models. RESULTS: Two years after stroke onset, 44.7% of patients suffered from impaired sensory function, 35.1% from impaired motor function, and 31.9% from impaired memory function. Mean patient' LS was 7.1/10 (SD 1.9). It was higher in women (+12.4) and lower among unemployed socioeconomically active patients (-13.1, vs. retired people). Adjusted for sex, occupation, impaired motor and memory functions, LS positively correlated with scores of Newsqol feelings, sleep, emotion, cognition and pain dimensions (slopes 0.20 to 0.31), but did not correlate with those of caregivers' Whoqol-bref domains. Family caregiver' LS was 7.2 (SD 1.7). It was lower in those with patients suffering from impaired memory function (-12.8) as well as from feelings and emotion issues (slopes 0.22). It was associated with all caregivers' Whoqol-bref domains (physical health, psychological health, environment, and social relationships) (slopes 0.53 to 0.68). CONCLUSIONS: Two-year post-cerebrovascular disease patient' LS was associated with gender, occupation, and impaired memory function. It correlated with feelings, sleep, emotion, cognition, and pain issues. Family caregivers of patients with impaired memory function had lower LS. Family caregiver' LS correlated with dimensions of patients' feelings (less independent, yourself, life changed, depressed, useless, less control because of stroke) and emotion (get more emotional, fear of another stroke or to become dependent on others), and with their own QoL. LS, Newsqol, and Whoqol appeared to be appropriate tools. Our findings may be useful for policy makers in relation to family and medical-social issues of stroke home-based rehabilitation.
Project description:BACKGROUND:Pediatric critical care is often accompanied by a variety of functional impairments. Preliminary evidence suggests children's participation in home activities has a slow trajectory post-pediatric intensive care unit (PICU) discharge, however, additional and more granular knowledge on specific problematic activities is needed to inform patient-centric rehabilitative care. The objectives of this study are to identify common home activities in which caregivers' report dissatisfaction and to determine predictors of caregivers' dissatisfaction with their child's participation in home activities post-PICU discharge. METHODS:Secondary analyses of data from a prospective cohort study, the Wee-Cover study, using a subsample of caregivers (N?=?170) of children 1-17?years, admitted to a PICU ?48?h with data on our primary outcome measure from at least one time point. Data were gathered at enrollment and at 3 and 6?months post-PICU discharge. Caregivers reported on their dissatisfaction with their child's participation in home activities via the Participation and Environment Measure. Common activities were identified by plotting caregiver dissatisfaction for each activity pre-and post-PICU, reporting activities in which ?50% of caregivers reported dissatisfaction with post-PICU, and assessing for significantly different dissatisfaction levels between time-points for each activity. Predictors of caregiver dissatisfaction were assessed using Poisson generalized estimated equation models. RESULTS:There was variability in reported dissatisfaction across all activities; ?50% of caregivers reported dissatisfaction with five activities, including getting clean, personal care management, and mealtime for younger children and household chores and homework for school-aged children and youth. Four activities had significantly higher caregiver dissatisfaction post-PICU: sleep (children <?5?years), homework, indoor play and games, and computer/video games (children ?5?years). Home environmental support and the interaction of having participation-focused strategies with receiving PICU-based rehabilitation services were negatively associated with caregiver dissatisfaction. Increased caregiver stress and functional performance were associated with increased dissatisfaction. CONCLUSIONS:Individualized PICU-based rehabilitation services to determine family priorities and develop participation-focused strategies, specifically those increasing environmental supports within the home, may ease the family's transition home post-PICU. TRIAL REGISTRATION:ClinicalTrials.gov Identifier NCT02148081 05/28/2014.
Project description:BACKGROUND:Burden of stroke is rising due to the demographic and epidemiological transitions in Sri Lanka. Assessment of success of stroke-management requires tools to assess the quality of life (QOL) of stroke survivors. Most of currently used QOL tools are developed in high-income countries and may not reflect characteristics relevant to resource-constrained countries. The aim was to develop and validate a new QOL tool for stroke survivors in Sri Lanka. METHODS:The COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) checklist was referred. A conceptual framework was prepared. Item generation was done reviewing the existing QOL tools, inputs from experts and from stroke survivors. Non-statistical item reduction was done for the 36 generated items with modified-Delphi technique. Retained 21 items were included in the draft tool. A cross sectional study was done with 180 stroke survivors. Exploratory Factor Analysis was done and identified factors were subjected to varimax rotation. Further construct validity was tested with 6 a-priori hypothesis using already validated tools (SF-36, EQ-5D-3?L) and a formed construct. Internal consistency reliability was assessed with Cronbach alpha. RESULTS:Four factors identified with principal-component-analysis explained 72.02% of the total variance. All 21 items loaded with a level?>?0.4. The developed tool was named as the Post-stroke QOL Index (PQOLI). Four domains were named as "physical and social function", "environment", "financial-independence" and "pain and emotional-wellbeing". Four domain scores of PQOLI correlated as expected with the SF-36, EQ-5D Index and EQ-5D-VAS scores. Higher domain scores were obtained for ambulatory-group than the hospitalized-group. Higher scores for financial-independence domain were obtained for the group without financial-instability. Five a-priori hypothesis were completely proven to be true. Cronbach-alpha level ranged from 0.682 to 0.906 for the four domains. CONCLUSIONS:There is first evidence for sufficient construct validity of the PQOLI as a valid QOL tool for measuring the QOL of stroke survivors with satisfactory internal consistency reliability.
Project description:Mexican Americans (MAs) have an increased risk of stroke and experience worse poststroke disability than non-Hispanic whites, which may translate into worse poststroke quality of life (QOL). We assessed ethnic differences in poststroke QOL, as well as potential modification of associations by age, sex, and initial stroke severity.Ischemic stroke survivors were identified through the biethnic, population-based Brain Attack Surveillance in Corpus Christi (BASIC) Project. Data were collected from medical records, baseline interviews, and 90-day poststroke interviews. Poststroke QOL was measured at ?90 days by the validated short-form stroke-specific QOL in 3 domains: overall, physical, and psychosocial (range, 0-5; higher scores represent better QOL). Tobit regression was used to model associations between ethnicity and poststroke QOL scores, adjusted for demographics, clinical characteristics, and prestroke cognition and function.Among 290 eligible stroke survivors (66% MA, 34% non-Hispanic whites, median age=69 years), median scores for overall, physical, and psychosocial poststroke QOL were 3.3, 3.8, and 2.7, respectively. Poststroke QOL was lower for MAs than non-Hispanic whites both overall (mean difference, -0.30; 95% confidence interval, -0.59, -0.01) and in the physical domain (mean difference, -0.47; 95% confidence interval, -0.81, -0.14) after multivariable adjustment. No ethnic difference was found in the psychosocial domain. Age modified the associations between ethnicity and poststroke QOL such that differences were present in older but not in younger ages.Disparities exist in poststroke QOL for MAs and seem to be driven by differences in older stroke patients. Targeted interventions to improve outcomes among MA stroke survivors are urgently needed.
Project description:Psychometric evidence is necessary to establish scientific integrity and clinical usefulness of translations and cultural adaptations of the Stroke-Specific Quality of Life (SS-QoL) scale. However, the limited evidence on psychometrics of Yoruba version of SS-QoL 2.0 (SS-QoL(Y)) is a significant shortcoming. This study assessed the test-retest reliability, internal consistency, convergent, divergent, discriminant and known-group validity of the SS-QoL(Y).Yoruba version of the WHOQoL-BREF was used to test the convergent and divergent validity of the SS-QoL(Y) among 100 consenting stroke survivors. The WHOQoL-BREF and SS-QoL(Y) was administered randomly in order to eliminate bias. The test-retest reliability of the SS-QoL(Y) was carried out among 68 of the respondents within an interval of 7 days. All respondents were purposively recruited from selected secondary and tertiary health facilities in South-west Nigeria. Data were analysed using descriptive statistics of mean and standard deviation, and inferential statistics of Spearman correlation, Cronbach's alpha, Intra-class Correlation Coefficient (ICC), Independent t-test and One-way ANOVA. Alpha level was set at p < 0.05.The physical health, psychological health, social relationship and environment domains on WHOQoL-BREF with correlation coefficient that ranged from 0.214 to 0.360 showed significant correlation with similar domains on SS-QoL(Y). Dissimilar domains between the two scales had r values from 0.035 to 0.366. Discriminant validity of SS-QoL(Y) showed that items' r value ranged from 0.711 to 0.920 with their hypothesized domains. The scale demonstrated moderate to strong test-retest reliability with Intra-class correlation coefficient (ICC) for the domains and overall scores (r = 0.47 to 0.81) and moderate to high internal consistency (Cronbach's alpha =0.61 to 0.82) for domains scores. These correlations were also significant for the domains and overall scores (p < 0.05). There were no significant differences across different age groups or gender for the domains or overall scores of SS-QoL(Y).Discriminant and known-group validity, test-retest reliability and internal consistency of the Yoruba version of the Stroke Specific Quality of Life 2.0 are adequate while the convergent and divergent validity are low but acceptable. The SS-QoL(Y) is recommended for assessing health-related quality of life among Yoruba stroke survivors.
Project description:BACKGROUND: Stroke has a major impact on survivors. Our study was designed to describe the mental status and health-related quality of life (HRQoL) in long-term survivors of TIA or minor ischaemic stroke (MIS) and evaluate associations of mental and physical factors with HR-QoL. METHODS: A random sample of the 10-year survivors of the Dutch TIA Trial (DTT) and the dutch participants of the European Atrial Fibrillation Trial (EAFT) were interviewed by postal questionnaire (n = 468) and at home (n = 198). Demographic data, mental health status (depression (CES-D), cognition (CAMCOG)), and health perception (SF-36 and Euroqol) were measured. RESULTS: 198 long-term survivors were included; mean age was 72.5 (SD 8.7 years), 22% was depressed (CES-D > or = 16) and 15% had cognitive dysfunction (CAMCOG < 80). The overall HR-QoL did not differ much from the norm population. Physical disability, occurrence of a major stroke and comorbidity of locomotion or the heart were independently associated with a low health perception. CONCLUSIONS: Despite varying amounts of disability, the majority of long-term survivors of a TIA or MIS rated their quality of life as rather good. Physical factors, rather than mental status were independently related to a decrease in perceived health.