Burden of informal care in stroke survivors and its determinants: a prospective observational study in an Asian setting.

BACKGROUND: Informal caregiving is an integral part of post-stroke recovery with strenuous caregiving demands often resulting in caregiving burden, threatening sustainability of caregiving and potentially impacting stroke survivor's outcomes. Our study aimed to examine and quantify objective and subjective informal care burden after stroke; and to explore the factors associated with informal care burden in Singapore. METHODS: Stroke patients and their informal caregivers were recruited from all five tertiary hospitals in Singapore from December 2010 to September 2013. Informal care comprised of assistance provided by informal caregivers with any of the activities of daily living. Informal care burden was measured by patients' likelihood of requiring informal care, hours of informal care required, and informal caregivers' Zarit's Burden Score. We examined informal care burden at 3-months and 12-months post-stroke. Generalized linear regressions were applied with control variables including patients' and informal caregivers' demographic characteristics, arrangement of informal care, and patients' health status including stroke severity (measured using National Institute of Health Stroke Scale), functional status (measured using Modified Rankin Scale), self-reported depression, and common comorbidities. RESULTS: Three hundred and five patients and 263 patients were examined at 3-months and 12-months. Around 35% were female and 60% were Chinese. Sixty three percent and 49% of the patients required informal care at 3-months and 12-months point, respectively. Among those who required informal care, average hours required per week were 64.3 h at 3-months and 76.6 h at 12-months point. Patients with higher functional dependency were more likely to require informal care at both time points, and required more hours of informal care at 3-months point. Female informal caregivers and those caring for patients with higher functional dependency reported higher Zarit's Burden. While informal caregivers who worked full-time reported higher burden, those caring for married stroke patients reported lower burden at 3-months point. Informal caregivers who co-cared with foreign domestic workers, i.e.: stay-in migrant female waged domestic workers, reported lower burden. CONCLUSIONS: Informal care burden remains high up to 12-months post-stroke. Factors such as functional dependency, stroke severity, informal caregiver gender and co-caring with foreign domestic workers were associated with informal care burden.

Role of caregiver factors in outpatient medical follow-up post-stroke: observational study in Singapore.

BACKGROUND: Outpatient medical follow-up post-stroke is not only crucial for secondary prevention but is also associated with a reduced risk of rehospitalization. However, being voluntary and non-urgent, it is potentially determined by both healthcare needs and the socio-demographic context of stroke survivor-caregiver dyads. Therefore, we aimed to examine the role of caregiver factors in outpatient medical follow-up (primary care (PC) and specialist outpatient care (SOC)) post-stroke. METHOD: Stroke survivors and caregivers from the Singapore Stroke Study, a prospective, yearlong, observational study, contributed to the study sample. Participants were interviewed 3-monthly for data collection. Counts of PC and SOC visits were extracted from the National Claims Database. Poisson modelling was used to explore the association of caregiver (and patient) factors with PC/SOC visits over 0-3 months (early) and 4-12 months (late) post-stroke. RESULTS: For the current analysis, 256 stroke survivors and caregivers were included. While caregiver-reported memory problems of a stroke survivor (IRR: 0.954; 95% CI: 0.919, 0.990) and caregiver burden (IRR: 0.976; 95% CI: 0.959, 0.993) were significantly associated with lower early post-stroke PC visits, co-residing caregiver (IRR: 1.576; 95% CI: 1.040, 2.389) and negative care management strategies (IRR: 1.033; 95% CI: 1.005, 1.061) were significantly associated with higher late post-stroke SOC visits. CONCLUSION: We demonstrated that the association of caregiver factors with outpatient medical follow-up varied by the type of service (i.e., PC versus SOC) and temporally. Our results support family-centred care provision by family physicians viewing caregivers not only as facilitators of care in the community but also as active members of the care team and as clients requiring care and regular assessments.

Dyadic approach to post-stroke hospitalizations: role of caregiver and patient characteristics.

AIM: To study the association of caregiver factors and stroke patient factors with rehospitalizations over the first 3 months and subsequent 3-12 months post-stroke in Singapore. METHODS: Patients with stroke and their caregivers were recruited in the Singapore Stroke Study, a prospective yearlong cohort. While caregiver and patient variables were taken from this study, hospitalization data were extracted from the national claims database. We used Poisson modelling to perform bivariate and multivariable analysis with counts of hospitalization as the outcome. RESULTS: Two hundred and fifty-six patient with stroke and caregiver dyads (N = 512) were analysed, with patients having spouse (60%), child (29%), sibling (4%) and other (7%) as their caregivers. Among all participants, 89% of index strokes were ischemic, 57% were mild in severity and more than half (59%) of the patients had moderate or severe disability post-stroke as measured on the Modified Rankin Scale. Having social support in the form of a foreign domestic worker for general help of caregiver reduced the hospitalization rate over 3 months post-stroke by 66% (IRR: 0.342; 95% CI: 0.180, 0.651). Compared to having a spousal caregiver, those with a child caregiver had an almost three times greater rate of hospitalizations over 3-12 months post-stroke (IRR: 2.896; 95% CI: 1.399, 5.992). Higher reported caregiving burden at the 3-month point was associated with the higher subsequent rate of hospitalization. CONCLUSION: Recommendations include the adoption of a dyadic or holistic approach to post-stroke care provision by healthcare practitioners, giving due importance to both patients with stroke and their caregivers, integrating caregivers in the healthcare system to extend the care continuum to include informal care in the community and provision of timely support for caregivers.

Can acute clinical outcomes predict health-related quality of life after stroke: a one-year prospective study of stroke survivors.

BACKGROUND: Health-related quality of life (HRQoL) is a key metric to understand the impact of stroke from patients' perspective. Yet HRQoL is not readily measured in clinical practice. This study aims to investigate the extent to which clinical outcomes during admission predict HRQoL at 3 months and 1 year post-stroke. METHODS: Stroke patients admitted to five tertiary hospitals in Singapore were assessed with Shah-modified Barthel Index (Shah-mBI), National Institute of Health Stroke Scale (NIHSS), Modified Rankin Scale (mRS), Mini-Mental State Examination (MMSE), and Frontal Assessment Battery (FAB) before discharge, and the EQ-5D questionnaire at 3 months and 12 months post-stroke. Association of clinical measures with the EQ index at both time points was examined using multiple linear regression models. Forward stepwise selection was applied and consistently significant clinical measures were analyzed for their association with individual dimensions of EQ-5D in multiple logistic regressions. RESULTS: All five clinical measures at baseline were significant predictors of the EQ index at 3 months and 12 months, except that MMSE was not significantly associated with the EQ index at 12 months. NIHSS (3-month standardized ß = - 0.111; 12-month standardized ß = - 0.109) and mRS (3-month standardized ß = - 0.122; 12-month standardized ß = - 0.080) were shown to have a larger effect size than other measures. The contribution of NIHSS and mRS as significant predictors of HRQoL was mostly explained by their association with the mobility, self-care, and usual activities dimensions of EQ-5D. CONCLUSIONS: HRQoL at 3 months and 12 months post-stroke can be predicted by clinical outcomes in the acute phase. NIHSS and mRS are better predictors than BI, MMSE, and FAB.

Healthcare utilization and cost trajectories post-stroke: role of caregiver and stroke factors.

BACKGROUND: It is essential to study post-stroke healthcare utilization trajectories from a stroke patient caregiver dyadic perspective to improve healthcare delivery, practices and eventually improve long-term outcomes for stroke patients. However, literature addressing this area is currently limited. Addressing this gap, our study described the trajectory of healthcare service utilization by stroke patients and associated costs over 1-year post-stroke and examined the association with caregiver identity and clinical stroke factors. METHODS: Patient and caregiver variables were obtained from a prospective cohort, while healthcare data was obtained from the national claims database. Generalized estimating equation approach was used to get the population average estimates of healthcare utilization and cost trend across 4 quarters post-stroke. RESULTS: Five hundred ninety-two stroke patient and caregiver dyads were available for current analysis. The highest utilization occurred in the first quarter post-stroke across all service types and decreased with time. The incidence rate ratio (IRR) of hospitalization decreased by 51, 40, 11 and 1% for patients having spouse, sibling, child and others as caregivers respectively when compared with not having a caregiver (p = 0.017). Disability level modified the specialist outpatient clinic usage trajectory with increasing difference between mildly and severely disabled sub-groups across quarters. Stroke type and severity modified the primary care cost trajectory with expected cost estimates differing across second to fourth quarters for moderately-severe ischemic (IRR: 1.67, 1.74, 1.64; p = 0.003), moderately-severe non-ischemic (IRR: 1.61, 3.15, 2.44; p = 0.001) and severe non-ischemic (IRR: 2.18, 4.92, 4.77; p = 0.032) subgroups respectively, compared to first quarter. CONCLUSION: Highlighting the quarterly variations, we reported distinct utilization trajectories across subgroups based on clinical characteristics. Caregiver availability reducing hospitalization supports revisiting caregiver's role as potential hidden workforce, incentivizing their efforts by designing socially inclusive bundled payment models for post-acute stroke care and adopting family-centered clinical care practices.

Can caregivers report their care recipients' post-stroke hospitalizations and outpatient visits accurately? Findings of an Asian prospective stroke cohort.

BACKGROUND: Health services research aimed at understanding service use and improving resource allocation often relies on collecting subjectively reported or proxy-reported healthcare service utilization (HSU) data. It is important to know the discrepancies in such self or proxy reports, as they have significant financial and policy implications. In high-dependency populations, such as stroke survivors, with varying levels of cognitive impairment and dysphasia, caregivers are often potential sources of stroke survivors' HSU information. Most of the work conducted on agreement analysis to date has focused on validating different sources of self-reported data, with few studies exploring the validity of caregiver-reported data. Addressing this gap, our study aimed to quantify the agreement across the caregiver-reported and national claims-based HSU of stroke patients. METHODS: A prospective study comprising multi-ethnic stroke patient and caregiver dyads (N = 485) in Singapore was the basis of the current analysis, which used linked national claims records. Caregiver-reported health services data were collected via face-to-face and telephone interviews, and similar health services data were extracted from the national claims records. The main outcome variable was the modified intraclass correlation coefficient (ICC), which provided the level of agreement across both data sources. We further identified the amount of over- or under-reporting by caregivers across different service types. RESULTS: We observed variations in agreement for different health services, with agreement across caregiver reports and national claims records being the highest for outpatient visits (specialist and primary care), followed by hospitalizations and emergency department visits. Interestingly, caregivers over-reported hospitalizations by approximately 49% and under-reported specialist and primary care visits by approximately 20 to 30%. CONCLUSIONS: The accuracy of the caregiver-reported HSU of stroke patients varies across different service types. Relatively more objective data sources, such as national claims records, should be considered as a first choice for quantifying health care usage before considering caregiver-reported usage. Caregiver-reported outpatient service use was relatively more accurate than inpatient service use over shorter recall periods. Therefore, in situations where objective data sources are limited, caregiver-reported outpatient information can be considered for low volumes of healthcare consumption, using an appropriate correction to account for potential under-reporting.

Understanding the characteristics of high users of hospital services in Singapore and their associations with healthcare utilisation and mortality: A cluster analysis.

INTRODUCTION: High users of hospital services require targeted healthcare services planning for effective resource allocation due to their high costs. This study aims to segmentize the population in the "Ageing In Place-Community Care Team" (AIP-CCT), a programme for complex patients with high inpatient service use, and examine the association of segment membership and healthcare utilisation and mortality. METHODS: We analysed 1,012 patients enrolled between June 2016 and February 2017. To identify patient segments, a cluster analysis was performed based on medical complexity and psychosocial needs. Next, multivariable negative binomial regression was performed using patient segments as the predictor, with healthcare and programme utilisation over the 180-day follow-up as outcomes. Multivariate cox proportional hazard regression was applied to assess the time to first hospital admission and mortality between segments within the 180-day follow-up. All models were adjusted for age, gender, ethnicity, ward class, and baseline healthcare utilisation. RESULTS: Three distinct segments were identified (Segment 1 (n = 236), Segment 2 (n = 331), and Segment 3 (n = 445)). Medical, functional, and psychosocial needs of individuals were significantly different between segments (p-value<0.001). The rates of hospitalisation in Segments 1 (IRR = 1.63, 95%CI:1.3-2.1) and 2 (IRR = 2.11, 95%CI:1.7-2.6) were significantly higher than in Segment 3 on follow-up. Similarly, both Segments 1 (IRR = 1.76, 95%CI:1.6-2.0) and 2 (IRR = 1.25, 95%CI:1.1-1.4) had higher rates of programme utilisation compared to Segment 3. Patients in Segments 1 (HR = 2.48, 95%CI:1.5-4.1) and 2 (HR = 2.25, 95%CI:1.3-3.6) also had higher mortality on follow-up. CONCLUSIONS: This study provided a data-based approach to understanding healthcare needs among complex patients with high inpatient services utilisation. Resources and interventions can be tailored according to the differences in needs among segments, to facilitate better allocation.

Stroke Rehabilitation Use and Caregiver Psychosocial Health Profiles in Singapore: A Latent Profile Transition Analysis.

OBJECTIVES: To identify and describe caregiver profiles based on their psychosocial health characteristics over a 12-month period and transitions among these profiles, to determine if stroke rehabilitation use at 12 months post-stroke differed by caregiver profile transition patterns, and to investigate if caregiver profiles at 3 months post-stroke moderate the association of stroke rehabilitation use at 3 months and 12 months post-stroke after accounting for covariates. DESIGN: Latent profile transition analysis of caregiver psychosocial health with stroke rehabilitation use at 12 month post-stroke as outcome. SETTING AND PARTICIPANTS: A total of 149 stroke patient-caregiver dyads from the Singapore Stroke Study. METHODS: Cross-sectional latent profile analyses were conducted on caregiver psychosocial health indicators of burden, depression, health status, quality of relationship with patient, and social support. Changes in latent profile classification over 3 time points (baseline, 3 months, and 12 months post-stroke) were analyzed using latent transition analysis. A transition model with stroke rehabilitation use at 12 months post-stroke as the outcome was tested after accounting for covariates. RESULTS: Two distinct caregiver psychosocial health latent profiles were found across time: nondistressed and distressed. Most caregivers were classified as nondistressed and remained nondistressed over time. Distressed caregivers at baseline were 76% likely to become nondistressed at 12 month post-stroke. Regardless of profile transition patterns, nondistressed caregivers at 12 months post-stroke tended to have cared for stroke rehabilitation nonusers at 12 months post-stroke. Patient depression explained profile classification at 3 months and 12 months post-stroke. After accounting for covariates, rehabilitation users at 3 months post-stroke tended to continue using rehabilitation at 12 months post-stroke only when they had nondistressed caregivers at 3 months post-stroke. CONCLUSIONS AND IMPLICATIONS: Whether caregiver adaptation explains the associations between the latent profile transition patterns and rehabilitation use at 12 months post-stroke should be examined. Early psychosocial health assessment and sustained support should be made available to stroke caregivers to enhance their well-being and subsequent patient rehabilitation participation.

Dyadic approach to supervised community rehabilitation participation in an Asian setting post-stroke: exploring the role of caregiver and patient characteristics in a prospective cohort study.

OBJECTIVE: To study the association of caregiver factors and stroke survivor factors with supervised community rehabilitation (SCR) participation over the first 3 months and subsequent 3 to 12 months post-stroke in an Asian setting. DESIGN: Prospective cohort study. SETTING: Community setting. PARTICIPANTS: We recruited stroke survivors and their caregivers into our yearlong cohort. Caregiver and stroke survivor variables were collected over 3-monthly intervals. We performed logistic regression with the outcome variable being SCR participation post-stroke. OUTCOME MEASURES: SCR participation over the first 3 months and subsequent 3 to 12 months post-stroke RESULTS: 251 stroke survivor-caregiver dyads were available for the current analysis. The mean age of caregivers was 50.1 years, with the majority being female, married and co-residing with the stroke survivor. There were 61%, 28%, 4% and 7% of spousal, adult-child, sibling and other caregivers. The odds of SCR participation decreased by about 15% for every unit increase in caregiver-reported stroke survivor's disruptive behaviour score (OR: 0.845; 95% CI: 0.769 to 0.929). For every 1-unit increase in the caregiver's positive management strategy score, the odds of using SCR service increased by about 4% (OR: 1.039; 95% CI: 1.011 to 1.068). CONCLUSION: We established that SCR participation is jointly determined by both caregiver and stroke survivor factors, with factors varying over the early and late post-stroke period. Our results support the adoption of a dyadic or more inclusive approach for studying the utilisation of community rehabilitation services, giving due consideration to both the stroke survivors and their caregivers. Adopting a stroke survivor-caregiver dyadic approach in practice settings should include promotion of positive care management strategies, comprehensive caregiving training including both physical and behavioural dimensions, active engagement of caregivers in rehabilitation journey and conducting regular caregiver needs assessments in the community.

Health-related quality of life loss associated with first-time stroke.

OBJECTIVES: This study aimed to quantify health-related quality of life (HRQoL) loss associated with first episode of stroke by comparing patient-reported HRQoL before and after stroke onset. The impact of stroke in local population was also evaluated by comparing the pre- and post-stroke HRQoL with that of the general population. METHODS: The HRQoL of stroke survivors was assessed with the EQ-5D-3L index score at recruitment, for recalled pre-stroke HRQoL, and at 3 and 12 month post-stroke. Change in HRQoL from pre-stroke to 3 and 12 month was self-reported by 285 and 238 patients, respectively. Mean EQ index score at each time point (baseline: 464 patients; 3 month post-stroke: 306 patients; 12 month post-stroke: 258 patients) was compared with published population norms for EQ-5D-3L. RESULTS: There was a significant decrease in HRQoL at 3 (0.25) and 12 month (0.09) post-stroke when compared to the retrospectively recalled patients' mean pre-stroke HRQoL level (0.87). The reduction at 3 month was associated with the reduction in all EQ-5D-3L health dimensions; reductions remaining at 12 month were limited to dimensions of mobility, self-care, usual activities, and anxiety/depression. Stroke patients had a lower mean EQ index than the general population by 0.07 points pre-stroke (0.87 vs. 0.94), 0.33 points at 3 month (0.61 vs. 0.94) and 0.18 points at 12 month (0.76 vs. 0.94) post-stroke. CONCLUSIONS: Stroke has a substantial impact on HRQoL in Singapore, especially in the first three months post-stroke. Compared to the general population, stroke survivors have lower HRQoL even before stroke onset. This pre-stroke deficit in HRQoL should be taken into account when quantifying health burden of stroke or setting goals for stroke rehabilitation.

Bridging the gap between primary and specialist care--an integrative model for stroke.

Stroke is a major cause of death and disability in Singapore and many parts of the world. Chronic disease management programmes allow seamless care provision across a spectrum of healthcare facilities and allow appropriate services to be brought to the stroke patient and the family. Randomised controlled trials have provided evidence for efficacious interventions. After the management of acute stroke in a stroke unit, most stable stroke patients can be sent to their family physician for continued treatment and rehabilitation supervision. Disabled stroke survivors may need added home-based services. Suitable community resources will need to be harnessed. Clinic-based stroke nurses may enhance service provision and coordination. Close collaboration between the specialist and family physician would be needed to right-site patients and also allow referrals in either direction where necessary. Barriers to integration can be surmounted by trust and improved communication. Audits would allow monitoring of care provision and quality care enhancement. The Wagner model of chronic care delivery involves self-management support, shared clinical information systems, delivery system redesign, decision support, healthcare organisation and community resources. The key and critical feature is the need for an informed, activated (or motivated) patient, working in collaboration with the specialist and family physician, and a team of nursing and allied healthcare professionals across the continuum of care. The 3-year Integrating Services and Interventions for Stroke (ISIS) project funded by the Ministry of Health will test such an integrative system.

Countrywide stroke incidence, subtypes, management and outcome in a multiethnic Asian population: the Singapore Stroke Registry--methodology.

RATIONALE: Because of its rapidly-growing and aging populations, the global burden of stroke will be felt most strongly in Asia. Data from Asia are scarce. Even rarer are data from multiethnic populations. AIM: The Singapore Stroke Registry is a countrywide registry of risk factors, stroke subtypes, management and outcome of incident and recurrent stroke in multiethnic Singapore. METHODS AND DESIGN: Using a cold-pursuit design, potential subjects are identified from medical claims, hospital discharge summaries and death certificates. Standardized methods are used for case ascertainment and data recording by trained staff into standardized case report forms. All ages and both genders are included. STUDY OUTCOME: Stroke incidence, subtypes and mortality will be calculated. Trend data will be obtained. Inter-ethnic differences will be explored. DISCUSSION: The Registry has many features of an 'ideal' incidence study. Previously unavailable countrywide data on an Asian population will be acquired. The unique data on inter-ethnic differences will help fill knowledge gaps in stroke epidemiology.

Immunoglobulin-associated creatine kinase masquerading as macro-creatine kinase type 2 in a statin user.

Macro-creatine kinase (CK) is a cause of falsely elevated CK. Macro-CK type 1 is immunoglobulin-associated CK; type 2 is polymeric mitochondrial-CK. An elderly asymptomatic lady had an elevated CK level after receiving statin therapy. Her CK gel electrophoresis analysis demonstrated coexisting macro-CK type 1 and type 2 patterns. Further analysis by immunofixation and mixing this patient's serum with CK control material revealed an IgG-associated macro-CK that mimicked the electrophoretic pattern of macro-CK type 2. This highly unusual discovery suggests the possibility of the misinterpretation of macro-CK type 1 as macro-CK type 2. Falsely elevated CK is still common despite modern laboratory instrumentation and should be investigated.

Factors affecting unplanned readmissions from community hospitals to acute hospitals: a prospective observational study.

INTRODUCTION: While the readmission rate from community hospitals is known, the factors affecting it are not. Our aim was to determine the factors predicting unplanned readmissions from community hospitals (CHs) to acute hospitals (AHs). MATERIALS AND METHODS: This was an observational prospective cohort study, involving 842 patients requiring post-acute rehabilitation in 2 CHs admitted from 3 AHs in Singapore. We studied the role of the Cumulative Illness Rating Scale (CIRS) organ impairment scores, the Mini-mental State Examination (MMSE) score, the Shah modified Barthel Index (BI) score, and the triceps skin fold thickness (TSFT) in predicting the rate of unplanned readmissions (UR), early unplanned readmissions (EUPR) and late unplanned readmissions (LUPR). We developed a clinical prediction rule to determine the risk of UR and EUPR. RESULTS: The rates of EUPR and LUPR were 7.6% and 10.3% respectively. The factors that predicted UR were the CIRS-heart score, the CIRS-haemopoietic score, the CIRS-endocrine / metabolic score and the BI on admission. The MMSE was predictive of EUPR. The TSFT and CIRS-liver score were predictive of LUPR. Upon receiver operator characteristics analysis, the clinical prediction rules for the prediction of EUPR and UR had areas under the curve of 0.745 and 0.733 respectively. The likelihood ratios of the clinical prediction rules for EUPR and UR ranged from 0.42 to 5.69 and 0.34 to 3.16 respectively. CONCLUSIONS: Patients who have UR can be identified by the admission BI, the MMSE, the TSFT and CIRS scores in the cardiac, haemopoietic, liver and endocrine/metabolic systems.