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

Stroke presents a major public health challenge accounting annually for 16 million cases and 5.7 million deaths globally [1].Stroke is the third largest contributor of DALYs [2], the tenth most common cause of hospitalization [3] and one of the top five causes of death in Singapore [4]. Treatment of stroke comprises of an acute and sub-acute or early chronic phase. While the acute phase includes emergency care in a tertiary inpatient setting, the sub-acute or early chronic phase comprises rehabilitation and outpatient medical follow-up to ensure continuity of care and implement secondary prevention practices. The outpatient medical follow-up usually occurs in a primary care (PC) setting involving a family physician. Researchers in a study reported family physicians (93.2%) to be the most frequently visited healthcare professional post-stroke, followed by other medical specialists (54%) [5].

Being voluntary and non-urgent, outpatient medical follow-up in PC or specialist outpatient care (SOC) setting is potentially determined by both healthcare needs and overall socio-demographic context of caregivers and stroke survivors. Moreover, stroke survivors often have residual impairments of varying magnitude, which make it challenging to attend outpatient medical visits independently. Often a family member engaged in caregiving responsibilities assists with such healthcare tasks [6] highlighting the relevance of including caregivers in studies on outpatient medical follow-up post-stroke. Evidence suggests that caregivers’ involvement in care plans of their care recipients and providing adequate education to the caregivers can decrease costs and increase patient satisfaction [7].

A systematic review involving 168 stroke survivors and 328 informal caregivers synthesized findings from 51 qualitative studies exploring primary care and community services experiences. They reported stroke survivor-caregiver dyads feeling marginalized by inadequate information provision, limited continuity of care and access to services post-stroke. None of the studies were from an Asian setting and the scope of the review excluded quantitative studies, which may provide more generalizable findings [8]. A cross-sectional study in Canada comparing healthcare visits of patients with and without stroke reported patients with stroke were twice more likely to visit a medical specialist and 1.5 times more likely to visit a family physician as compared to patients without stroke. Although researchers explored the association of outpatient medical healthcare visits with stroke survivors’ demographics, mobility, comorbid cardiometabolic conditions, and mood/anxiety disorders, they did not examine the association with any caregiver factor in their study [5]. Roth and colleagues used Medicare claims data to study health service utilization over six months after index stroke hospitalization in 279 stroke survivors from the REGARDS (REasons for Geographic And Racial Differences in Stroke) study in the US. They reported that co-residing with a caregiver was associated with reduced health service utilization, including shorter hospital lengths of stay, fewer emergency department visits, and fewer primary care visits [9]. Another study in the US exploring the contribution of caregiver factors in healthcare service utilization by stroke survivors reported caregiver’s health beliefs being associated with stroke survivors attending scheduled medical and therapy appointments post-discharge from inpatient rehabilitation facilities [10]. Among these existing studies exploring the role of caregivers in outpatient medical follow-up, most of the studies are either qualitative [8] or conducted in Western settings [5, 9, 10] and had limited [9, 10] or no inclusion of caregiver factors [5]. Addressing the existing gaps, we aimed to examine the association of caregiver factors (along with patient factors) with outpatient medical follow-up of stroke survivors over 1-year post-stroke. The outpatient medical follow-up comprised of PC and SOC visits. PC visits consisted of stroke survivor’s visits to any public PC clinics in Singapore during the yearlong follow-up. Also known as “one stop primary care clinics,” public PC clinics are government run, providing subsidized care to Singaporeans and permanent residents. They are multi-doctor led clinics, which provide a comprehensive range of services [11]. While the Singapore healthcare system consists of a mixed public–private primary care, almost half (45%) of patients with chronic diseases are managed in public PC clinics [12]. SOC visits included attendance to any of the specialist run outpatient clinics in the tertiary hospital premises.

We conducted a yearlong, prospective, observational study involving stroke survivors and their caregivers recruited from all five tertiary hospitals in Singapore during the recruitment period, from December 2010 to September 2013. The eligibility criteria for stroke survivors included the following: (a) Singaporean or permanent resident, more than 40 years old and residing in Singapore for the next one year, (b) stroke must be a recent diagnosis (i.e., stroke symptoms occurring within four weeks before admission) with the diagnosis made by a clinician and/or supported by brain imaging (CT or MRI) and (c) not globally aphasic. The eligibility criteria for the caregivers included the following: (a) an immediate or extended family member or friend, (b) more than 21 years of age (the legal definition of adult in Singapore), (c) providing care or assistance of any kind and taking responsibility for the patient (as recognized by the patient) and (d) not fully paid for caregiving. We did not impose any language related exclusions, enabling us to recruit a multi-ethnic study cohort. The study procedures are reported in detail separately [13, 14]. This study was approved by the National University of Singapore Institutional Review Board, SingHealth Centralized Institutional Review Board, and the National Health Group Domain Specific Review Board. Written informed consent was obtained from both the patients and the caregivers in their preferred language by trained researchers. All methods were performed in accordance with the guidance provided in the Declaration of Helsinki.

Two hundred and fifty-six stroke survivor and caregiver dyads were available for the current analysis. (please refer to Fig. 1). The average (standard deviation or SD) number of PC visits for stroke survivors over 0–3 months and 4–12 months post-stroke were 0.867 (1.197) and 2.305 (2.242), respectively. The average (SD) number of SOC visits for stroke survivors over 0–3 months and 4–12 months post-stroke were 1.836 (1.823) and 4.605 (5.616), respectively. The average age of caregivers was 50 years, with 76% female, 57% Chinese and 79% married. With the mean age of 61.8 years, the majority of the stroke survivors were male (64%), Chinese (58%) and married (80%). Eighty-nine percent of the stroke survivors had an ischemic stroke, with 25% discharged to a step-down facility from an acute hospital setting (please refer to Table 1).

We are among the first to describe the role of caregivers in outpatient medical follow-up post-stroke. Adding new knowledge to existing literature, we demonstrated that the association of caregiver factors with outpatient medical visits varied by the type of service consumed (i.e., PC versus SOC) and temporally across the early and late post-stroke period within each service. We found that caregiver factors were significantly associated with PC visits in the early post-stroke period only, with patient factors being significantly associated with early and late post-stroke periods. A possible explanation could be related to the caregivers stepping into the new caregiving role during the early period, which is often reported as a challenging and overwhelming experience [15, 26, 27]. Once caregivers transition into a stable phase with role familiarity, it may be possible that clinical factors solely determined the frequency of PC visits.

We reported a higher mean number of SOC visits than PC visits for both 0–3 months and 4–12 months post-stroke. Contrary to our finding, previous studies have reported stroke survivors to have higher primary care visits as compared to specialist visits over 1 month [28], 3 months [29] and 12 months [5] post-stroke. It may be possible that stroke survivors in our setting continued being treated in SOC clinics without timely transfer to PC clinics. It is well-established that specialist settings encounter high patient load within Singapore, which may be transferred to primary care setting, ensuring the right care in the right setting. This preposition of treating patients in the most appropriate setting at the lowest possible cost and achieving favourable patient outcomes is known as “right-siting” of healthcare services. This term has been commonly used in Singapore since 2004 to describe the principle of transferring patients with stable chronic conditions from SOC clinics to PC clinics [30]. While such “right-siting” programs have been established for patients with chronic kidney disease [31], asthma [32] and diabetes [30] there has been no such program for stroke survivors. Another possibility explaining the difference in our finding with existing literature could be related to differences in patient profiles; specifically, stroke survivors in our study may require specialist care for post-stroke needs. Further exploration of the transition between SOC and PC settings post-stroke is beyond the scope of the current study, which aimed to study the caregiver and patient factors associated with the use of PC and SOC services. However, acknowledging the importance of treating patients in the most appropriate care setting, future research should examine transitions across different outpatient medical care settings to optimize the use of such outpatient services.

While there is unequivocal evidence in both non-stroke [33, 34] and stroke populations [13, 35] of caregiver burden being associated with the increased use of inpatient services, the role of caregiver burden in the use of outpatient clinical services is unexplored and unestablished. Within the stroke population, caregiver burden is reported to be associated with increased hospitalization [13] and increased institutionalization of stroke survivors [35]. Contrary to the established association of caregiver burden with the increased use of inpatient services, we found that caregiver burden was associated with reduced PC visits post-stroke. Our finding is concordant with previous literature on the utilization of non-urgent services being associated with caregiver burden [36]. Considering the role of caregiver burden in post-stroke inpatient and PC services utilization, it may be possible that burdened caregivers do not engage in outpatient medical follow-up in the early period, which may result in subsequent greater hospitalizations, further highlighting the importance of early outpatient medical follow-up.

We found caregiver-reported memory type of behavioral problems were associated with decreased PC visits. One possible explanation could be caregivers perceiving stroke survivors’ memory problems as part of normal ageing and not cues to seek medical care for post-stroke sequelae [37‐39]. Alternatively, handling memory-related behavioral issues may additionally strain the caregivers and they may not have the bandwidth or time to seek PC services. A study comparing healthcare utilization in stroke and non-stroke populations in the Canadian setting reported stroke survivors to have significantly more visits to most healthcare professionals than those without stroke. Further, researchers reported that stroke survivors with mood or anxiety disorders were 1.4 times more likely to visit a family physician than those without these disorders [5]. Differences in findings across both studies could be related to the different types of behavioral issues captured in the analyses (i.e., memory vs mood disorders), differences in data collection methods (i.e., objective source of PC visits from claims records in our study versus self-reported PC visits in the comparison study) or differences in the perception of behavioral problems.

Our findings related to patient determinants of PC visits were in concordance with previous literature, specifically patients with multiple chronic conditions being high utilizers of healthcare services post-stroke compared to those without such chronic conditions [10, 31]. In agreement with our results were the results reported by Roth and colleagues [9], with a higher Charlson comorbidity score being associated with higher consumption of health services. Specifically, stroke survivors with higher scores had longer hospitalization stay, more primary care outpatient visits and increased odds of receiving rehabilitation services.

For SOC visits, we found having a co-residing caregiver associated with increased SOC visits in the late post-stroke period, which is in agreement with the findings from a non-stroke population [40]. While there is consistent evidence supporting the presence of a co-residing caregiver being associated with reduced use of inpatient services [9, 41, 42], such evidence is limited for outpatient medical services. A US-based study on community-dwelling, Medicare enrolled, hospitalized patients explored the association of living alone (without a potential caregiver) with readmission within 2 months post-discharge. They reported the odds of early readmission being 1.5 times in those living alone versus those living with someone [41]. Skinner and colleagues reported the co-residing status of adult–child caregivers being associated with reduced hospital length of stay as compared to those with adult–child caregivers living more than 15 min away from the elderly [42]. Within the stroke population, having a co-residing caregiver was reported to be associated with reduced length of hospitalization and fewer ED visits [9]. It is possible that having a co-residing caregiver ensures availability of support or assistance in the community post-stroke, which may aid in a smooth transition to home, prevent unnecessary use of acute healthcare services and facilitate adherence and attendance to scheduled specialist appointments.

Caregivers’ negative care management strategies were associated with increased SOC visits in the late post-stroke period. This could be explained by the caregivers’ perception of SOC settings and specialists. Past studies have reported a differential preference for specialists over regular doctors for specific conditions [43]. Additionally, caregivers may feel more comfortable sharing their problems during a SOC visit as compared to PC visit since the latter tend to be shorter, with about 89% of PC consults for chronic ailments in Singapore lasting between 6 to 10 min [44]. A third possibility could be that stroke survivors using SOC services may have higher care needs, making caregiving challenging, resulting in caregivers adopting more negative care management strategies. Qualitatively exploring the caregiving challenges in caregivers of stroke survivors visiting SOC and PC clinics may help gain a deeper understanding of this reported association. Similar to our findings, other researchers have reported stroke survivors’ functional status playing a significant role in stroke-related costs [45, 46], and healthcare utilization [45, 47].

After establishing the role of caregivers in outpatient medical follow-up post-stroke, we recommend family physicians view caregivers not only as facilitators of care in the community but also as active members of the care team responsible for patient care and as potential clients requiring care and regular assessments. Viewing caregivers as clients during consults includes physicians assessing caregiver needs [48], coordinating required services and ensuring their well-being as part of the routine post-stroke follow-up. This will result in the stroke survivor-caregiver dyadic well-being and potentially ensure the sustainability of caregiving arrangement and continuity of outpatient medical follow-up. Having a caregiver as an active member of the care team can be operationalized by practicing the concept of “inclusive care” which establishes the caregiver role as “extending the healthcare team in the home environment and representing their care recipients in the clinic environment” [49].

In conclusion, we reported caregiver factors significantly associated with both PC and SOC visits, establishing caregivers’ role in outpatient medical follow-up post-stroke. While caregiver-reported memory related behavioral problems of a stroke survivor and caregiver burden were significant associated with lower early post-stroke PC visits, co-residing caregiver and negative care management strategies were significantly associated with higher late post-stroke SOC visits. Our results support family-centered care provision by family physicians, viewing the 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. Caregivers should be integrated into the care teams by practicing inclusive care, which also ensures the extension of the healthcare team in the home environment.