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

Abstract

BackgroundHealth 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.MethodsA 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.ResultsWe 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%.ConclusionsThe 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.Electronic supplementary materialThe online version of this article (10.1186/s12913-018-3634-4) contains supplementary material, which is available to authorized users.

The Use and Costs of Paid and Unpaid Care for People with Dementia: Longitudinal Findings from the IDEAL Cohort

“…Sheehan, et al [68] found that use of hospital admissions and emergency department visits reported by people with stroke or their caregivers were reliable against Medicare claims records; however reports by both respondent types were less accurate for more routine services (rehabilitation, home health). In a study of caregivers of stroke patients [69], proxy report agreement with medical claims records on outpatient and primary care visits was better than report on inpatient admissions and emergency department visits. Caregivers underreported outpatient and primary care visits, while overreporting hospital admissions.…”

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

“…Patients with stroke and their caregivers were recruited in the Singapore Stroke Study, a prospective cohort study with recruitment extending from December 2010 to September 2013 [18]. Recruitment was conducted in all five tertiary hospitals in Singapore during this period ensuring the representativeness of our sample.…”

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

“…The main difference between face-to-face and telephone surveys was capturing all three domains during face-to-face surveys, while only financial domain data was captured during telephone surveys. We extracted the dependent variables from the National Claims Database, which has been reported to be a more objective source of healthcare data [ 16 ]. The National Claims Database is a nation-wide database of healthcare utilization and associated expenditure maintained centrally by the Ministry of Health in Singapore.…”