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Stroke patients and their caregivers: an interdependent relationship crucial for stroke care

Pacientes com acidente vascular cerebral e seus cuidadores: uma relação de interdependência para o atendimento pós-hospitalar

Neurological disorders have a considerable influence on a significant portion of the global population, with ~43% being affected.11 GBD 2021 Nervous System Disorders Collaborators. Global, regional, and national burden of disorders affecting the nervous system, 1990-2021: a systematic analysis for the Global Burden of Disease Study 2021. Lancet Neurol 2024;23(04):344–381. Doi: 10.1016/S1474-4422(24)00038-3
https://doi.org/10.1016/S1474-4422(24)00...
This burden is particularly pronounced in low- and middle-income countries (LMICs). Among the top ten conditions that resulted in the greatest nervous system disability-adjusted life years in 2021, stroke was the primary contributor in most regions across the world.11 GBD 2021 Nervous System Disorders Collaborators. Global, regional, and national burden of disorders affecting the nervous system, 1990-2021: a systematic analysis for the Global Burden of Disease Study 2021. Lancet Neurol 2024;23(04):344–381. Doi: 10.1016/S1474-4422(24)00038-3
https://doi.org/10.1016/S1474-4422(24)00...
Moreover, it is crucial to acknowledge that the coronavirus disease 2019 (COVID-19) pandemic has brought to light an increase in the worldwide prevalence of risk factors for cardiovascular disease, which has hindered the progress made in reducing the burden of stroke and cardiovascular diseases.22 GBD 2021 Diseases and Injury Collaborators. Global incidence, prevalence, years lived with disability (YLDs), disability-adjusted life-years (DALYs), and healthy life expectancy (HALE) for 371 diseases and injuries in 204 countries and territories and 811 subnational locations, 1990–2021: a systematic analysis for the Global Burden of Disease Study 2021. Lancet 2024

Brazil, as one of the largest LMICs, has seen an epidemiological shift toward a higher prevalence of noncommunicable diseases among its aging population. Recent observations reveal substantial improvements in the management of acute stroke patients in the country.33 Martins SCO, Pontes-Neto OM, Pille A, et al. Reperfusion therapy for acute ischemic stroke: where are we in 2023? Arq Neuropsiquiatr 2023;81(12):1030–1039. Doi: 10.1055/s-0043-1777721
https://doi.org/10.1055/s-0043-1777721...
Despite these achievements, there are still socioeconomic disparities that hinder the ongoing support for stroke patients in their communities, particularly in post-hospital care and rehabilitation.44 Feigin VL, Owolabi MOWorld Stroke Organization–Lancet Neurology Commission Stroke Collaboration Group. Pragmatic solutions to reduce the global burden of stroke: a World Stroke Organization-Lancet Neurology Commission. Lancet Neurol 2023;22(12):1160–1206. Doi: 10.1016/S1474-4422(23)00277-6
https://doi.org/10.1016/S1474-4422(23)00...
,55 Silva TRD, Luvizutto GJ, Martins LG, et al. Barriers to patient recruitment in a poststroke neurorehabilitation multicenter trial in Brazil. Braz J Med Biol Res 2023;56:e12326. Doi: 10.1590/1414-431X2023e12326
https://doi.org/10.1590/1414-431X2023e12...

To maintain the advantages gained in stroke care during the acute phase of stroke and reduce the stress experienced by stroke patients in their everyday lives, it is important to consider the preferences of both patients and healthcare providers by providing equal access to well-staffed, high-quality facilities that offer clear communication and appropriate information after hospitalization. Therefore, it is important to understand the severity of the disability faced by stroke survivors.

The occurrence of disability five years after a stroke depends on the severity of the stroke. Approximately 25% of individuals with minor strokes will have disabilities. Conversely, ~50% of those who have had moderate strokes will have a disability. Furthermore, for those who have experienced a severe stroke, ~80% will have a disability. Additionally, it is estimated that around half of the survivors will be disabled ~10 years after the stroke.66 Luengo-Fernandez R, Paul NL, Gray AM, et al;Oxford Vascular Study. Population-based study of disability and institutionalization after transient ischemic attack and stroke: 10-year results of the Oxford Vascular Study. Stroke 2013;44(10):2854–2861. Doi: 10.1161/STROKEAHA.113.001584
https://doi.org/10.1161/STROKEAHA.113.00...
,77 Hardie K, Hankey GJ, Jamrozik K, Broadhurst RJ, Anderson C. Ten-year risk of first recurrent stroke and disability after first-ever stroke in the Perth Community Stroke Study. Stroke 2004;35(03): 731–735. Doi: 10.1161/01.STR.0000116183.50167.D9
https://doi.org/10.1161/01.STR.000011618...

These statistics highlight the need for a healthcare system that offers equivalent levels of care for stroke patients with the aim of providing the highest possible quality of care to enable stroke survivors to resume their daily activities. This issue is further compounded in LMICs, where socioeconomic factors can impact the healthcare support that patients receive.88 Zhang DT, Onyebeke C, Nahid M, et al. Social Determinants of Health and Cardiologist Involvement in the Care of Adults Hospitalized for Heart Failure. JAMA Netw Open 2023;6(11):e2344070. Doi: 10.1001/jamanetworkopen.2023.44070
https://doi.org/10.1001/jamanetworkopen....

Caregivers play a critical role in connecting healthcare professionals with stroke patients after they are released from hospitals, particularly in countries with significant socioeconomic differences and restricted access to healthcare. As a result, caregivers often assume primary responsibility for managing the patient's condition once they have been discharged from hospitals in countries with limited resources for providing post-acute stroke care. This is particularly true for patients who require similar rehabilitation care after discharge from the hospital.

Caregivers frequently encounter various barriers and obligations when attempting to offer post-discharge care to stroke survivors, which often leads to high levels of stress and risk of burnout. The psychological aspects experienced by caregivers ultimately affect their ability to provide care. Studies have shown that elevated levels of caregiver stress can have a detrimental effect on the recovery and successful rehabilitation of stroke patients.99 Glass TA, Matchar DB, Belyea M, Feussner JR. Impact of social support on outcome in first stroke. Stroke 1993;24(01):64–70. Doi: 10.1161/01.str.24.1.64
https://doi.org/10.1161/01.str.24.1.64...
Additionally, the reduced functional capacity of stroke patients can serve as an indicator for caregivers who are at risk of bearing high levels of burden.1010 Rigby H, Gubitz G, Eskes G, et al. Caring for stroke survivors: baseline and 1-year determinants of caregiver burden. Int J Stroke 2009;4(03):152–158. Doi: 10.1111/j.1747-4949.2009.00287.x
https://doi.org/10.1111/j.1747-4949.2009...
Therefore, it is essential to support caregivers to improve their well-being, which will ultimately benefit stroke survivors' health and quality of life.

Caregivers for stroke patients are primarily family members, with spouses and women being the most frequent.1111 Carod-Artal FJ, Ferreira Coral L, Trizotto DS, Menezes Moreira C. Burden and perceived health status among caregivers of stroke patients. Cerebrovasc Dis 2009;28(05):472–480. Doi: 10.1159/000236525
https://doi.org/10.1159/000236525...
These individuals are at a higher risk of experiencing burnout and tend to have a greater chance of developing cardiovascular diseases.1212 van den Heuvel ET, de Witte LP, Schure LM, Sanderman R, Meyboom-de Jong B. Risk factors for burn-out in caregivers of stroke patients, and possibilities for intervention. Clin Rehabil 2001;15(06):669–677. Doi: 10.1191/0269215501cr446oa
https://doi.org/10.1191/0269215501cr446o...
Female caregivers, in particular, may be at an increased risk due to the substantial caregiving burden they face with their sick spouses.1313 Lee S, Colditz GA, Berkman LF, Kawachi I. Caregiving and risk of coronary heart disease in U.S. women: a prospective study. Am J Prev Med 2003;24(02):113–119. Doi: 10.1016/s0749-3797(02)00582-2
https://doi.org/10.1016/s0749-3797(02)00...
Studies have shown that female caregivers have a higher prevalence of unknown or uncontrolled vascular risk factors compared with stroke patients.1414 Ifejika NL, Bhadane M, Cai C, Noser EA, Savitz SI. Cluster Enrollment: A Screening Tool for Stroke Risk Factors in Minority Women Caregivers. J Natl Med Assoc 2019;111(03):281–284. Doi: 10.1016%2Fj.jnma.2018.10.013

The majority of caregivers are family members, who may have a genetic predisposition to develop primary conditions such as hypertension, diabetes, and obesity, putting them at risk of stroke.1515 Nozoe KT, Kim LJ, Moreira GA, et al. Are caregivers the next to suffer stroke? Int J Stroke 2014;9(03):E11. Doi: 10.1111/ijs.12250
https://doi.org/10.1111/ijs.12250...
Research by Marques-Romero and colleagues found a higher prevalence of traditional stroke-risk factors in a sample of caregivers of stroke patients. Furthermore, the increased risk in caregivers appears to be unrelated to the level of familial relationship with the patient under their care.1616 Marquez-Romero JM, Romo-Martínez J, Hernández-Curiel B, Ruiz-Franco A, Krishnamurthi R, Feigin V. Assessing the individual risk of stroke in caregivers of patients with stroke. Arq Neuropsiquiatr 2024;82(03):1–5. Doi: 10.1055/s-0044-1779691
https://doi.org/10.1055/s-0044-1779691...

Further research is required to gain a deeper understanding of stroke risk and its impact on both stroke survivors and their caregivers. It is crucial to assess the significance of stress and depressive symptoms as risk factors1717 Salaycik KJ, Kelly-Hayes M, Beiser A, et al. Depressive symptoms and risk of stroke: the Framingham Study. Stroke 2007;38(01): 16–21. Doi: 10.1161/01.STR.0000251695.39877.ca
https://doi.org/10.1161/01.STR.000025169...
because not only caregivers for stroke survivors are at a higher risk for cardiovascular disease, but also caregivers who provide support for individuals with other neurological conditions, such as dementia.1818 Hong I, Han A, Reistetter TA, Simpson AN. The risk of stroke in spouses of people living with dementia in Korea. Int J Stroke 2017; 12(08):851–857. Doi: 10.1177/1747493016677987
https://doi.org/10.1177/1747493016677987...

LMICs are often characterized by additional confounding factors regarding stroke care, such as ethnic and socioeconomic disparities, limited access to education, and healthcare systems. These complexities may have had an impact on the findings of Marques-Romero and colleagues' research.1616 Marquez-Romero JM, Romo-Martínez J, Hernández-Curiel B, Ruiz-Franco A, Krishnamurthi R, Feigin V. Assessing the individual risk of stroke in caregivers of patients with stroke. Arq Neuropsiquiatr 2024;82(03):1–5. Doi: 10.1055/s-0044-1779691
https://doi.org/10.1055/s-0044-1779691...
,1919 Haley WE, Roth DL, Howard G, Safford MM. Caregiving strain and estimated risk for stroke and coronary heart disease among spouse caregivers: differential effects by race and sex. Stroke 2010;41(02):331–336. Doi: 10.1161/STROKEAHA.109.568279
https://doi.org/10.1161/STROKEAHA.109.56...

The potential usefulness of the stroke riskometer application in helping caregivers and stroke patients make lifestyle modifications should be considered in the future to improve stroke-risk awareness among caregivers, ultimately benefiting stroke survivors.2020 Hussin R, Aziz AFA, Ali MF, et al; FRCPE. Stroke Riskometer Application (SRA™)influence on lifestyle changes of home bound familial Malaysian stroke caregivers: a randomised controlled trial in a primary care based longer term stroke care facility. BMC Prim Care 2023;24(01):181. Doi: 10.1186/s12875-023-02138-x
https://doi.org/10.1186/s12875-023-02138...

References

  • 1
    GBD 2021 Nervous System Disorders Collaborators. Global, regional, and national burden of disorders affecting the nervous system, 1990-2021: a systematic analysis for the Global Burden of Disease Study 2021. Lancet Neurol 2024;23(04):344–381. Doi: 10.1016/S1474-4422(24)00038-3
    » https://doi.org/10.1016/S1474-4422(24)00038-3
  • 2
    GBD 2021 Diseases and Injury Collaborators. Global incidence, prevalence, years lived with disability (YLDs), disability-adjusted life-years (DALYs), and healthy life expectancy (HALE) for 371 diseases and injuries in 204 countries and territories and 811 subnational locations, 1990–2021: a systematic analysis for the Global Burden of Disease Study 2021. Lancet 2024
  • 3
    Martins SCO, Pontes-Neto OM, Pille A, et al. Reperfusion therapy for acute ischemic stroke: where are we in 2023? Arq Neuropsiquiatr 2023;81(12):1030–1039. Doi: 10.1055/s-0043-1777721
    » https://doi.org/10.1055/s-0043-1777721
  • 4
    Feigin VL, Owolabi MOWorld Stroke Organization–Lancet Neurology Commission Stroke Collaboration Group. Pragmatic solutions to reduce the global burden of stroke: a World Stroke Organization-Lancet Neurology Commission. Lancet Neurol 2023;22(12):1160–1206. Doi: 10.1016/S1474-4422(23)00277-6
    » https://doi.org/10.1016/S1474-4422(23)00277-6
  • 5
    Silva TRD, Luvizutto GJ, Martins LG, et al. Barriers to patient recruitment in a poststroke neurorehabilitation multicenter trial in Brazil. Braz J Med Biol Res 2023;56:e12326. Doi: 10.1590/1414-431X2023e12326
    » https://doi.org/10.1590/1414-431X2023e12326
  • 6
    Luengo-Fernandez R, Paul NL, Gray AM, et al;Oxford Vascular Study. Population-based study of disability and institutionalization after transient ischemic attack and stroke: 10-year results of the Oxford Vascular Study. Stroke 2013;44(10):2854–2861. Doi: 10.1161/STROKEAHA.113.001584
    » https://doi.org/10.1161/STROKEAHA.113.001584
  • 7
    Hardie K, Hankey GJ, Jamrozik K, Broadhurst RJ, Anderson C. Ten-year risk of first recurrent stroke and disability after first-ever stroke in the Perth Community Stroke Study. Stroke 2004;35(03): 731–735. Doi: 10.1161/01.STR.0000116183.50167.D9
    » https://doi.org/10.1161/01.STR.0000116183.50167.D9
  • 8
    Zhang DT, Onyebeke C, Nahid M, et al. Social Determinants of Health and Cardiologist Involvement in the Care of Adults Hospitalized for Heart Failure. JAMA Netw Open 2023;6(11):e2344070. Doi: 10.1001/jamanetworkopen.2023.44070
    » https://doi.org/10.1001/jamanetworkopen.2023.44070
  • 9
    Glass TA, Matchar DB, Belyea M, Feussner JR. Impact of social support on outcome in first stroke. Stroke 1993;24(01):64–70. Doi: 10.1161/01.str.24.1.64
    » https://doi.org/10.1161/01.str.24.1.64
  • 10
    Rigby H, Gubitz G, Eskes G, et al. Caring for stroke survivors: baseline and 1-year determinants of caregiver burden. Int J Stroke 2009;4(03):152–158. Doi: 10.1111/j.1747-4949.2009.00287.x
    » https://doi.org/10.1111/j.1747-4949.2009.00287.x
  • 11
    Carod-Artal FJ, Ferreira Coral L, Trizotto DS, Menezes Moreira C. Burden and perceived health status among caregivers of stroke patients. Cerebrovasc Dis 2009;28(05):472–480. Doi: 10.1159/000236525
    » https://doi.org/10.1159/000236525
  • 12
    van den Heuvel ET, de Witte LP, Schure LM, Sanderman R, Meyboom-de Jong B. Risk factors for burn-out in caregivers of stroke patients, and possibilities for intervention. Clin Rehabil 2001;15(06):669–677. Doi: 10.1191/0269215501cr446oa
    » https://doi.org/10.1191/0269215501cr446oa
  • 13
    Lee S, Colditz GA, Berkman LF, Kawachi I. Caregiving and risk of coronary heart disease in U.S. women: a prospective study. Am J Prev Med 2003;24(02):113–119. Doi: 10.1016/s0749-3797(02)00582-2
    » https://doi.org/10.1016/s0749-3797(02)00582-2
  • 14
    Ifejika NL, Bhadane M, Cai C, Noser EA, Savitz SI. Cluster Enrollment: A Screening Tool for Stroke Risk Factors in Minority Women Caregivers. J Natl Med Assoc 2019;111(03):281–284. Doi: 10.1016%2Fj.jnma.2018.10.013
  • 15
    Nozoe KT, Kim LJ, Moreira GA, et al. Are caregivers the next to suffer stroke? Int J Stroke 2014;9(03):E11. Doi: 10.1111/ijs.12250
    » https://doi.org/10.1111/ijs.12250
  • 16
    Marquez-Romero JM, Romo-Martínez J, Hernández-Curiel B, Ruiz-Franco A, Krishnamurthi R, Feigin V. Assessing the individual risk of stroke in caregivers of patients with stroke. Arq Neuropsiquiatr 2024;82(03):1–5. Doi: 10.1055/s-0044-1779691
    » https://doi.org/10.1055/s-0044-1779691
  • 17
    Salaycik KJ, Kelly-Hayes M, Beiser A, et al. Depressive symptoms and risk of stroke: the Framingham Study. Stroke 2007;38(01): 16–21. Doi: 10.1161/01.STR.0000251695.39877.ca
    » https://doi.org/10.1161/01.STR.0000251695.39877.ca
  • 18
    Hong I, Han A, Reistetter TA, Simpson AN. The risk of stroke in spouses of people living with dementia in Korea. Int J Stroke 2017; 12(08):851–857. Doi: 10.1177/1747493016677987
    » https://doi.org/10.1177/1747493016677987
  • 19
    Haley WE, Roth DL, Howard G, Safford MM. Caregiving strain and estimated risk for stroke and coronary heart disease among spouse caregivers: differential effects by race and sex. Stroke 2010;41(02):331–336. Doi: 10.1161/STROKEAHA.109.568279
    » https://doi.org/10.1161/STROKEAHA.109.568279
  • 20
    Hussin R, Aziz AFA, Ali MF, et al; FRCPE. Stroke Riskometer Application (SRA™)influence on lifestyle changes of home bound familial Malaysian stroke caregivers: a randomised controlled trial in a primary care based longer term stroke care facility. BMC Prim Care 2023;24(01):181. Doi: 10.1186/s12875-023-02138-x
    » https://doi.org/10.1186/s12875-023-02138-x

Publication Dates

  • Publication in this collection
    08 July 2024
  • Date of issue
    2024

History

  • Received
    28 Apr 2024
  • Accepted
    29 Apr 2024
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