A stroke is one of the main causes of disability and the fourth leading cause of death in industrialized countries.1 Similarly to European countries,2 in the United States, stroke prevalence varies between 1.9% and 4.3% among adults older than 20 years.3 The incidence of a stroke increases rapidly with age, doubling every decade after 55 years old.4 After a stroke, survivors may experience several issues (ie, rehabilitation) that increase their direct costs.5
According to the conceptual framework developed by Eisenberg6 (1989), there are 4 categories of costs: (1) direct medical costs (ie, hospitalization, drugs, rehabilitation, medical equipment, care), (2) direct nonmedical costs (ie, food, transportation, home aides, clothing), (3) indirect costs (ie, morbidity and mortality costs), and (4) intangible costs (nonfinancial indirect costs such as the cost of pain). Stroke survivors and their families may face considerable “out-of-pocket” stroke-related direct medical and nonmedical costs, ascribed to formal (eg, specialist visits) and informal (eg, home care workers) care,7 equipment or materials needed for care (eg, wheelchairs or walkers), changing the home environment, and transportation needs.8 Some studies9,10 have shown that stroke-related direct costs are very burdensome for survivors and their families, especially during the first poststroke year.9 Indeed, direct costs for strokes were estimated to be 23.6 billion dollars in the United States3 and 16 billion euros in Europe,11 including hospital outpatient or office-based provider visits, prescribed drugs, and home healthcare.3 However, as described in a recent study,12 stroke-related direct costs are projected to increase from 31 billion dollars in 2015 to 66 billion dollars in 2035.
Direct costs for survivors are difficult to estimate, and the studies are inconsistent,9,10,13 although these inconsistencies might be due to the fact that studies on stroke-related direct costs come from different countries with different healthcare systems. For example, whereas Joo et al10 estimated costs between $4356 and $8211 per year per patient, other authors observed higher direct costs during the first postdischarge year.9,13 In the study by Lopez-Bastida et al,9 direct costs for stroke-related care, including acute hospitalization, rehabilitation, and drugs, were estimated to be approximately $17 618 per year per patient. A similar amount ($15 624 dollars) was observed in another study,13 in which stroke survivors were independent in activities of daily living.
In addition to the direct costs for formal and informal care, stroke survivors and their families face costs related to the equipment or materials needed for care,14 such as medical equipment, wheelchairs or walkers, modifications to home architecture, and transportation.8 It was estimated that these costs, especially during the first 3 months after the stroke, range from $53.50 to $4591, with average spending of $547 dollars per patient.8
The stroke survivors' predictors associated with stroke-related direct costs are still unknown. Indeed, although previous study authors have analyzed the predictors of the acute hospital cost,15,16 national health system cost,17,18 and social healthcare costs,19 to our knowledge, only 1 study14 has identified the predictors of individual stroke survivor direct costs. In this study,14 it has been found that direct costs were associated with motor and cognitive impairments, the need for services, and the level of disability at 0 to 6 months, with a trend for stronger associations at 7 to 12 months, and negatively at 7 months after discharge from the rehabilitation hospital. As described by the authors,14 these findings suggest a tendency for formal services to be targeted toward younger people with disabilities.
Although several studies7,20,21 have been conducted on stroke survivors during the postrehabilitation period, few of these13,22 have used a longitudinal study to analyze the direct costs (ie, direct medical and nonmedical costs) that stroke survivors face during their first poststroke year. After a stroke, survivors may not be completely independent; they may require further care,7 including assistive devices or changes to their environment. There is limited research examining the care needs and associated costs of this care to survivors beyond the rehabilitation period. Several study authors have analyzed the direct costs of national health systems23,24; however, only one14 has analyzed the direct costs provided “out of pocket” by stroke survivors. This represents a limitation in the literature because it is important to have an overview of the direct costs of the stroke population so that national health systems can better implement economic programs for stroke survivors who have been discharged from rehabilitation hospitals. Considering that stroke survivors may face high stroke-related direct costs during their first year after discharge, a longitudinal study is crucial for understanding these issues. Analyzing the changes and additions to the direct costs of stroke survivors is fundamental to quantify and understand which direct costs are incurred by stroke survivors during the first postdischarge year. In addition to this, no study authors have analyzed the perceived direct costs, understood as the perception that patients have in relation to the direct costs incurred, and their predictors. Knowing the perception that stroke survivors have about the incurred direct costs could give us more information on how burdensome the first-year poststroke is, even in subjective (from the patient's point of view) and not only objective (through research tools) terms. Therefore, the identification of specific predictors would be helpful for developing more socially and economically tailored interventions for stroke survivors during their first year after a stroke. For these reasons, the aims of this study were
- to describe the additional direct costs (ie, medical and nonmedical costs) incurred by stroke survivors during their first poststroke year;
- to identify the baseline predictors of stroke-related direct costs and their perceived cost.
In this study, we used data of a longitudinal study, described in Savini et al's25 protocol, aimed at evaluating the quality of life in stroke survivor–caregiver dyads and analyzing the interdependence between both members of the dyads. A longitudinal study was adopted, with data collection at baseline (T0) and at 3 (T1), 6 (T2), 9 (T3), and 12 (T4) months after the stroke survivor's discharge from the rehabilitation hospital.
Stroke survivors (N = 415) were enrolled in this study after being discharged from several rehabilitation hospitals located in 10 Italian provinces in the center and south of Italy. In this study, we included stroke survivors with the following characteristics: (1) a stroke diagnosed by computerized axial tomography or a magnetic resonance imaging scan, (2) willingness to give informed consent, (3) and discharged from a rehabilitation hospital. Stroke survivors who had (a) preexisting physical or psychiatric disabilities (eg, dementia, multiple sclerosis, Parkinson's disease), (b) a previous stroke, or (c) aphasia and a reduced level of consciousness were excluded from the study.
This study was approved by the institutional review board of each rehabilitation hospital where the stroke survivors were recruited. Stroke survivors were fully informed about the study, and data collection began only after the informed consent form had been signed.
Stroke survivors were enrolled while being discharged from a rehabilitation hospital. In Italy, where the study was conducted, each patient was admitted to a rehabilitation hospital after the acute phase. Generally, after 45 to 60 days of rehabilitation, stroke survivors are discharged home, and during this time, stroke survivors were enrolled for the study. Research assistants and all nurses trained in the research protocol identified any potential participants to be included in the study according to the inclusion and exclusion criteria. After explaining to the potential participants the aims of the study, participants were invited to sign the informed consent form. Then, the research assistants proceeded to collect baseline data (T0). During the first interview, the research assistants scheduled subsequent meetings with participants for data collection at 3, 6, 9, and 12 months after discharge (T1, T2, T3, and T4, respectively). Data collection was carried out by the research assistants at the stroke survivor's or caregiver's home after making an appointment by telephone.
To collect data on the participants' direct costs and perception of their costs in follow-up interviews, a specific questionnaire was developed by the research team. Specifically, the questionnaire was structured in 3 sections. In the first section, we asked stroke survivors through dichotomous questions (yes/no) to describe what types of direct costs they had incurred during the previous 3 months (eg, for drugs, physiotherapy, wheelchairs, transportation, nursing care). Specifically, the data were collected by direct (medical and nonmedical) costs, such as formal care (4 items: eg, “Did you incur any expenses for nurse assistance/physiotherapy/speech therapist or occupational therapy?”), informal care (1 item: eg, “Did you incur any expenses for paid informal caregiver?”), equipment, transportation, and home modification (6 items: eg, “Did you incur any expenses for drugs/wheelchairs/transportation/changes in home environment/housekeeping/prescribed special foods?”). In the second section, we asked the participants to describe the overall average amount spent in euros over the previous 3 months. The perceived direct overall average cost in euros that stroke survivors incurred was “out-of-pocket expenses” that were not covered by the national healthcare system. Finally, in the last section, we asked participants to judge their overall cost perception of their stroke-related direct costs with the response options of “low,” “medium,” or “high.”
Sociodemographic characteristics, such as gender, age, marital status, education level, work situation, and living situation, were collected with a different questionnaire developed by the research team that had been used in previous studies.26–29 Moreover, clinical data, such as the stroke type and site, were extracted from the participants' clinical records. To evaluate the participants' autonomy in everyday life activities and their comorbidities, we administered the Barthel Index (BI),30 a well-validated 10-item instrument that provides a score between 0 and 100 with higher scores corresponding to better autonomy, and the Modified Charlson Comorbidity Index,31 which evaluates the presence of 16 comorbidities and provides a possible score from 0 to 31 where higher scores represent a greater comorbidity.
Descriptive statistics, including means, standard deviation (SD), and frequency, were used to summarize the stroke survivors' sociodemographic and clinical characteristics. The trend/evolution of the stroke-related direct costs during the follow-up (from T1 to T4) was evaluated using a linear quantile mixed-effects model with a random intercept and random slope by treating time as a continuous variable. The 95% confidence interval (CI) of the predicted quantile, that is, the median, was computed using a nonparametric bootstrap technique. Furthermore, the stroke survivors' direct cost type and the perceived cost (classified as medium/high vs low) during the first 12 months after discharge were evaluated using generalized linear mixed-effects models with binomial distributions. To identify the baseline predictors of a participant's stroke-related direct costs and his or her perceptions of these costs (high vs medium/low), a mixed-effects model was fitted for each response in consideration of the following predictors: follow-up time and the stroke survivor's sociodemographic (age, gender, job, education, and living situation) and baseline clinical (BI and Modified Charlson Comorbidity Index scores) characteristics. Results are reported in US dollars; data collected in euros were converted to US dollars using the average exchange rate for the period of the study (1 euro = 1.12 dollars).
Sociodemographic Characteristics of Stroke Survivors
We enrolled a sample of 415 stroke survivors, but only 239 of them completed the study until T4 (Figure). As described in Table 1, at baseline, the survivors were 70.6 (SD, 12.2) years old, and 52.7% were male. Among the survivors, 57% had a partner, and 66.5% had a low–middle education level. In addition, most stroke survivors did not work (68.4%). Stroke survivors had an ischemic stroke (80.5%) with a slight prevalence to the right hemisphere (Table 2). Stroke survivors also experienced other comorbidities, as shown in Table 2; the most common were hypertension (70.3%), hypercholesterolemia (35.2%), and diabetes (31.4%). Table 2 also indicated an average BI of 58.4 (SD, 30.6) at baseline, with a lower score on Barthel bathing (mean [SD], 2.0 [2.4]), Barthel grooming (mean [SD], 2.8 [2.4]), and Barthel stairs (mean [SD], 4.4 [4.0]) dimensions.
Among the 415 stroke survivors, 335 were interviewed at T1 as 23 had died, 13 were reinstitutionalized, 24 were no longer interested in participating, and 20 were not traceable. At the second, third, and fourth visits (T2, T3, and T4, respectively), 280, 266, and 239 patients were followed, respectively. The reasons for dropout after the first visit were as follows: death (n = 19), reinstitutionalization (n = 12), lack of interest in the study (n = 40), and loss at follow-up (n = 25). However, the 239 patients with a complete follow-up were not different from the whole cohort in terms of the demographic and clinical factors; for example, their average age was 69.9 years, and the male prevalence was 51%.
Stroke-related Direct Costs of the Stroke Survivors
The stroke-related direct costs incurred by the participants are described in Table 3. Furthermore, the Figure shows the changes in the median estimate of direct costs together with the 95% CI and sample size at any given time. During the first year after discharge, stroke survivors spent approximately a total of $3701 on stroke-related direct costs (Table 3). Although there had not been a significant change over time (P = .161), the highest direct costs occurred during the first 6 months (T1 and T2), when in each 3-month period, the participants spent an average of approximately $1000.
Table 3 reports the percentage of survivors who incurred direct (ie, medical and nonmedical) costs for different categories. Most of the survivors reported incurring direct costs related to formal and informal care, such as physiotherapy (50%) and speech therapy (18%). Thirteen percent of the survivors incurred expenses for nursing care (eg, bladder management or dressing for wounds); and only 8%, for occupational therapy. In addition, expenses for the informally paid caregiver were needed (28%). Direct medical costs for formal and informal care remained stable over time, except for physiotherapy, which decreased significantly for 12 months post discharge.
Regarding equipment, materials, home modification, and transportation, most stroke survivors incurred costs for drugs (69%); buying wheelchairs, adult diapers, and catheters (47%); and paying for transportation (33%) in the first 3 months. In addition, approximately 26% of stroke survivors reported direct costs due to changes in the home environment. The proportion of patients spending on drugs, aids, and changes in the home environment decreased significantly from T1 to T4. As expected, regarding the perceived cost, 45% (95% CI, 40–50) of the survivors declared having incurred a high level of living costs during the first 3 months after discharge. This percentage reduced to 40% (95% CI, 35–45) by the end of the follow-up (P = .079) period.
Predictors of Stroke-related Direct Costs and Their Perceived Cost
Table 4 presents the baseline predictors of the participants' stroke-related direct costs and their perceptions about direct costs as identified with mixed-effects models. Interestingly, taking into account the baseline predictors, the decreasing trend in the time of these direct costs and their perceptions becomes significant. As the baseline predictors of higher stroke-related direct costs, we found higher levels of education and lower BI scores (poorer physical functioning), whereas only the BI score was confirmed as a predictor for higher perceived cost.
To the best of our knowledge, this study is one of the first studies to use a 12-month longitudinal design to analyze additional direct costs incurred by stroke survivors during their first poststroke year after rehabilitation hospital discharge. Through this study, it has been possible to observe the direct costs that stroke survivors incur after discharge from rehabilitation hospitals (baseline) and at 3, 6, 9, and 12 months post discharge. On the basis of our findings, we report that (1) the direct costs remained stable during the first year of poststroke discharge; (2) higher incurred direct costs were predicted by the linear effect of time, higher educational level, and lower BI score; and (3) a higher perception of direct cost was predicted by the linear effect of time and the lower BI score.
A stroke has a great impact not only on survivors' physical,32 psychological,33 and social34 lives but also on their financial lives9 including costs associated with formal (ie, physiotherapy, speech therapy, nursing care, and occupational therapy) and paid informal care. According to the literature,8,10,19 the incurred direct costs are burdensome mainly during the first poststroke year. In our study, stroke survivors incurred an average annual expenditure of approximately $3700. The median average expense was approximately $925, with a range from $112 to $7840 dollars per person. As suggested by the literature,35 the first 6 months after a stroke are the most difficult for stroke survivors. After a stroke, some survivors experience aphasia,36 dysphagia,37 hemiplegia,38 and poor social interaction,5 which could require specialized treatments that lead to greater expenses for stroke survivors and their families. Although the greatest degree of recovery during treatment occurs rapidly in the first 4 weeks after the stroke,35 previous study authors39,40 have reported recovery periods between 3 and 6 months after the stroke. Stroke survivors are not fully rehabilitated when they are discharged from a rehabilitation hospital,7 and for this reason, they usually require further care and medication and face greater direct costs during the initial postdischarge period. As suggested by Akhavan Hejazi et al,8 stroke survivors spend approximately 40% of their annual income on rehabilitation care during their first 3 months after discharge.
The stroke-related direct costs incurred by survivors involve not only those for services provided by professionals, such as nurses, physiotherapists, or speech therapists, but also those for equipment, materials, home modification, and transportation. Because of physical functioning or the need to use wheelchairs and walkers at home,41 stroke survivors may also need to have their homes changed structurally.42,43 During the first-time postdischarge, equipment and house environmental changes are needed after a stroke.44 Indeed, as described in the literature,44,45 stroke survivors usually encounter several environmental barriers in their home, especially when they use assistive devices, such as wheelchairs and walker aids. In addition, the localization of rooms (ie, toilet and bedrooms) was reported to be a barrier when environmental demands and individual capacities do not match.44 For this reason, especially during the first month post discharge, stroke survivors need to make environmental changes in their home to break down these barriers. In addition, some stroke survivors may experience dysphagia.37 For these stroke survivors, special foods are needed that are significantly expensive.41 In accordance with the literature,8 we observed that most of the participants incurred direct costs for drugs (69%), aids (ie, wheelchairs, adult diapers; 47%), and changes in their home environment (26%) at baseline (after discharge). Stroke survivors continue to incur significant direct costs associated with a stroke for the first year after discharge from a rehabilitation hospital.13
Regarding the predictors of a survivor's stroke-related direct costs and his or her perception about direct costs, higher direct costs were predicted by a linear time effect, a high level of education (high/low), and a lower BI score. As described in this study, stroke survivors with a higher education level and a lower BI were more likely to have higher direct costs than those with a higher BI and a lower education level. Stroke survivors with a higher education level are likely those who have a better job and a higher income, and this may explain the reason why a higher educational level was a predictor of higher stroke survivor direct costs. On the basis of the literature, it is not a new finding that patients with higher education levels are healthier than those with lower education levels.46,47 At the same time, we observed that lower physical functioning was associated with higher living costs. These findings are not surprising as lower physical functioning requires more care, aid, and medication.48 Stroke survivors with lower physical functioning require aid such as wheelchairs or specific changes in their home environment,44 both of which incur higher direct costs. In addition, stroke survivors who have lower physical functioning often need higher-paid informal and formal care because they are not completely independent.49 Further care7 and specific aids to improve stroke survivors' physical functioning44 can significantly increase their stroke-related direct costs. However, although it is not surprising that stroke survivors with lower physical functioning incurred higher costs for stroke-related activities or aids, it is interesting to note that stroke survivors who needed support from the health system the most were those who actually had had to incur higher “out-of-pocket” direct costs. These findings highlight the importance of health systems to review how resources are allocated, giving greater support, especially economic, to those with more disabilities, because they are usually the ones who, without the health system's financial support, could have higher expenses in the first year post discharge from the rehabilitation hospital.
In addition, stroke survivors' perception of their direct costs as higher was predicted by lower physical functioning. Certainly, stroke survivors who have a lower capacity for physical functioning,7 as described previously, incur higher direct costs because of their disabilities. Accordingly, this can impact their perception of the cost. The physical abilities of stroke survivors improve over time along with their abilities for BI, most likely because of further informal and formal care,25 and this may reduce their direct costs.
This study has several strengths and practical implications. When observing the direct costs of stroke survivors after being discharged, it is essential to understand that a stroke is a disease that impacts on the survivors' and their family's lives and requires a long rehabilitation process. We found that, during the first poststroke year, stroke survivors required medications, special foods, or further paid informal and formal care, and these represent the increased direct costs for survivors and their families. When analyzing the changes in the direct costs of stroke survivors and their predictors, it is fundamental to quantify and understand which costs are incurred during their first year after discharge. From a clinical point of view, knowing which types of direct costs are most commonly incurred by stroke survivors is important because services can be provided by national health systems during this first year period that can meet their needs. Therefore, the identification of specific direct cost predictors would be helpful for developing more socially and economically tailored interventions for stroke survivors in their first year after the stroke. We found that the survivors with a lower education spent less money in the poststroke period. These survivors are probably those in worse economic conditions, and so they need more help from the national health systems.
Despite the aforementioned strengths, this study also has several limitations. First, our stroke survivors were enrolled if they had low–medium disabilities and were free of cognitive disorders or serious organ pathologies. Increasing the severity of the conditions of the participants would likely cause us to observe greater direct costs for care. Another limitation is that this study was conducted in only 1 European country, so we suggest further studies be conducted in other European countries so that the results can be generalized; however, this should be conducted with caution given the differences between healthcare systems among countries. Another limitation is that we did not consider the financial contributions of caregivers, and it would be appropriate for further studies to consider these contributions in terms of the economic support that they provide to the stroke survivors. In addition, we did not analyze depressive symptoms as predictors. Depressive symptoms are common after a stroke and probably are associated with higher expenses, including multiple medications and outpatient clinic visits, so these results should be used with caution. At last, in our inclusion criteria, we did not consider stroke survivors with a reduced level of consciousness, dementia, and aphasia because we used several paper-and-pencil instruments that could not be completed by these people. Cognitive impairment and aphasia are common complications after a major stroke, and excluding these conditions may exclude a large part of the population; thus, the generalization of this study's results would be very limited.
A stroke has a great impact on a survivor's life. Stroke survivors may incur several direct costs for formal or specialist care and for drugs, special foods, and home environment changes, during the first year after being discharged from a rehabilitation hospital. After discharge, stroke survivors are not completely independent7; this can lead to several direct costs for stroke survivors. The rehabilitation process is long and does not end when a stroke survivor is discharged from the rehabilitation hospital.25 Stroke survivors and their families are often left alone after discharge because not all countries can guarantee a community program that can provide care to stroke survivors.
Relevance to Clinical Practice
Through this longitudinal study, we have provided a picture of a stroke survivor's situation during the first year after discharge in terms of the direct costs, perception about direct costs, and their predictors. With data collection performed every 3 months, we observed the trajectories of a stroke survivor's direct costs during 1 year. The trajectories of the previously mentioned variables may be useful for clinicians and administrators when implementing specific interventions that take into consideration the economic burden of the stroke.
What is Already Known About the Topic
- Stroke-related direct costs are very burdensome for survivors and their families, especially during the first poststroke year.
- Total direct costs can be ascribed to formal (eg, specialist visits) and informal (eg, homecare workers) care, equipment or materials needed for care (eg, wheelchairs or walkers), changing the home environment, and transportation.
What’s New and Important
- The largest direct costs occurred during the first months post stroke.
- Higher stroke-related direct costs were predicted by higher levels of education and lower physical functioning, whereas higher perceived cost was predicted by lower physical functioning.
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