Disability after stroke: a systematic review

Incapacidade após acidente vascular cerebral: uma revisão sistemática

Julia Fabres do Carmo Renato Lirio Morelato Hudson Pereira Pinto Elizabete Regina Araujo de Oliveira About the authors

Abstracts

Introduction

Stroke is the most common cause of disability in Western countries, yet there is no consensus in the literature on how to measure and describe disability from stroke.

Objective

To conduct a systematic literature review on disability in stroke survivors.

Method

Observational studies published in the PubMed, LILACS and SciELO online databases were selected, to evaluate disability in adults and in the elderly after stroke in the period 2002–2012. The Downs and Black checklist for non-randomized studies was used to assess the quality of the articles.

Results

212 articles were found from which 16 were selected to compose the study. The mean age of participants was 67 years, and disability affected 24% to 49% of the population evaluated. With regard to measurement instruments, 31% of the studies analyzed presented results of disability by means of the modified Rankin Scale; 19% by means of the World Health Organization’s International Classification of Functioning, Disability and Health; 19% by means of Katz’ Index of Independence in Activities of Daily Living; 12.5% by means of the London Handicap Scale; 12.5 % by means of the Barthel Index; and 6.25% by means of the Functional Independence Measure.

Conclusion

Literature is not uniform as regards means of measuring disability after stroke, but considering the preference of articles in assessing physical performance in activities of daily living, it can be concluded that a quarter to half of the population that survives stroke has some degree of disability.

Stroke; Disabled persons; Disability evaluation


Introdução

O acidente vascular cerebral (AVC) é a causa mais comum de incapacidade nos países ocidentais, e ainda não existe na literatura um consenso na forma de mensurar e descrever tal incapacidade.

Objetivo

Realizar uma revisão sistemática da literatura sobre a incapacidade nos sobreviventes do AVC.

Métodos

Foram selecionados estudos observacionais que avaliaram incapacidade na população adulta e idosa após AVC publicados na base de dados LILACS e nas bibliotecas virtuais PubMed e SciELO no período de 2002 a 2012. Para avaliação da qualidade dos artigos foi utilizado o critério de Downs e Black.

Resultados

Foram encontrados 212 artigos e selecionados 16 para compor o banco de dados. A média de idade dos participantes foi de 67 anos e a incapacidade atingiu de 24% a 49% da população avaliada. Com relação aos instrumentos de mensuração, 31% dos estudos analisados apresentaram os resultados de incapacidade por meio do Modified Rankin Scale, 19% por meio da Classificação Internacional de Funcionalidade, 19% por meio do Katz, 12,5% por meio do London Handicap Scale, 12,5% por meio do Barthel e 6,25% por meio da Medida de Independência Funcional.

Conclusão

A literatura não é uniforme quanto à forma de mensurar a incapacidade após AVC, mas considerando a preferência dos artigos em avaliar o desempenho físico nas atividades de vida diária, pode-se concluir que de um quarto à metade da população que sobrevive ao AVC apresenta algum grau de incapacidade.

Acidente vascular cerebral; Pessoas com deficiência; Avaliação da deficiência


Introduction

Stroke is the term used for a group of diseases that have abrupt onset and cause neurological damage, and is the most common cause of disability in Western countries (11 Zivin JA. Abordagem das doenças cerebrovasculares. In: Goldman L, Ausiello D, editores. Cecil: tratado de medicina interna. 22. ed. Rio de Janeiro: Elsevier; 2005. p. 2667-70., 22 Roger VL, Go AS, Lloyd-Jones DM, Benjamin EJ, Berry JD, Borden WB, et al. Heart disease and stroke statistics — 2012 update: a report from the American Heart Association. Circulation. 2012;125(1):e2-e220., 33 Rosamond W, Flegal K, Furie K, Go A, Greenlund K, Haase N, et al. Heart disease and stroke statistics — 2008 update: a report from the American Heart Association Statistics Committee and Stroke Statistics Subcommittee. Circulation. 2008;117(4): e25-146.). It is estimated that 25% to 74% of the 50 million stroke survivors in the world have some physical, cognitive or emotional deficiency, and require partial or complete assistance to carry out activities of daily living (ADL) (44 Miller EL, Murray L, Richards L, Zorowitz RD, Bakas T, Clark P, et al. Comprehensive overview of nursing and interdisciplinary rehabilitation care of the stroke patient: a scientific statement from the American Heart Association. Stroke. 2010;41(10):2402-48.). In recent years, advances in treatment of stroke reduced mortality rates, which, added to the phenomenon of aging, resulted in growth of the population that survives stroke (44 Miller EL, Murray L, Richards L, Zorowitz RD, Bakas T, Clark P, et al. Comprehensive overview of nursing and interdisciplinary rehabilitation care of the stroke patient: a scientific statement from the American Heart Association. Stroke. 2010;41(10):2402-48.

5 Carod-Artal FJ, Trizotto DS, Coral LF, Moreira CM. Determinants of quality of life in Brazilian stroke survivors. J Neurol Sci. 2009;284(1-2):63-8.

6 Coss P, Bell RMR, Armenteros JP, Batista LER. Índice de independencia de paciente con Accidente Vascular Encefálico. Rev Cubana Enferm. 2010;26(4):206-21.
-77 Cerniauskaite M, Quintas R, Koutsogeorgou E, Meucci P, Sattin D, Leonardi M, et al. Quality-of-life and disability in patients with stroke. Am J Phys Med Rehabil. 2012;91(13 Suppl 1):39-47.).

Some theoretical models were created in order to explain and establish relationships between the concepts of deficiency, disability and need for assistance (88 Nagi SZ. An epidemiology of disability among adults in the United States. Milbank Mem Fund Q Health Soc. 1976;54(4):439-67., 99 Organização Mundial da Saúde. CIF: Classificação Internacional de Funcionalidade, Incapacidade e Saúde. São Paulo: EDUSP; 2003. p. 13-32., 1010 Alves LC, Leite IC, Machado CJ. Conceituando e mensurando a incapacidade funcional da população idosa: uma revisão de literatura. Ciênc Saúde Coletiva. 2008;13(4):1199-207.). In one study that reviewed some of these models, Alves et al. (1010 Alves LC, Leite IC, Machado CJ. Conceituando e mensurando a incapacidade funcional da população idosa: uma revisão de literatura. Ciênc Saúde Coletiva. 2008;13(4):1199-207.) defined disability as a dynamic process that encompasses physical, mental and emotional conditions. Functional disability is understood as one part of this process, and is considered an indicator of disability, assessed by means of physical performance in daily activities (1010 Alves LC, Leite IC, Machado CJ. Conceituando e mensurando a incapacidade funcional da população idosa: uma revisão de literatura. Ciênc Saúde Coletiva. 2008;13(4):1199-207., 1111 Baptista DBDA. Idosos no município de São Paulo: expectativa de vida ativa e perfis multidimensionais de incapacidade a partir da SABE [dissertação]. Belo Horizonte: Universidade Federal de Minas Gerais; 2003.). Alves also brings together a variety of measurement instruments, demonstrating that in the literature there is still no single standard defined to measure disability.

Previous systematic reviews sought to identify predictive variables of good functional performance along with measurement instruments used to assess participation in survivors of stroke; however, no study searched by functional disability, considered a good indicator of disability (1111 Baptista DBDA. Idosos no município de São Paulo: expectativa de vida ativa e perfis multidimensionais de incapacidade a partir da SABE [dissertação]. Belo Horizonte: Universidade Federal de Minas Gerais; 2003., 1212 Veerbeek JM, Kwakkel G, Van Wegen EE, Ket JC, Heymans MW. Early prediction of outcome of activities of daily living after stroke: a systematic review. Stroke. 2011;42(5):1482-8., 1313 Tse T, Douglas J, Lentin P, Carey L. Measuring participation after stroke: a review of frequently used tools. Arch Phys Med Rehabil. 2013;94(1):177-92.). The objective of this study was to systematically review the literature on disability after stroke, seeking to identify functional disability, variables associated with it, and disability measurement instruments used in this population.

Method

This was a systematic review of observational studies that adhered to the Cochrane Collaboration’s online course recommendation of a prior search for systematic reviews on the topic in order to evaluate the need for the study. The search for reviews was performed in the Cochrane library and online using MEDLINE, with the following keywords: “systematic review”, “stroke” and “disabled person” (1414 Castro AA, Saconato H, Guidugli F, Clarck OAC. Curso de revisão sistemática e metanálise [internet]. São Paulo: LED-DIS/UNIFESP; 2002 [cited 2015, Jun 2]. Available from: http://www.virtual.epm.br/cursos/metanalise
http://www.virtual.epm.br/cursos/metanal...
).

Search strategy

The search strategy for this review included research in three online databases: MEDLINE via PubMed (National Library of Medicine and National Institutes of Health); LILACS (Latin American and Caribbean Health Sciences Literature) and SciELO (Scientific Electronic Library Online). The key words used were matched in English and Portuguese, and registered in the National Library of Medicine’s controlled vocabulary thesaurus (MeSH) and the Health Sciences Descriptors (Decs) trilingual thesaurus: “stroke” and “disabled persons” in English, and “acidente vascular cerebral” and “pessoa com deficiência” in Portuguese. The terms “disability” and “functional disability” were not used as descriptors because they were not registered in the Decs. The search period was January 2002 through December 2012, with no restriction on language.

Selection of studies

Titles and abstracts were read for initial selection of the articles identified. The full articles were then read, and those that met the inclusion criteria were included in the data collection phase, performed by means of a standardized form (Annex 1). Identification and selection of the studies was performed by two researchers working independently.

Eligibility criteria

The articles selected were observational and cross-sectional or cohort, with the aim of evaluating the disability or level of assistance required in adults and elderly individuals after suffering stroke. Studies that evaluated other outcomes in addition to disability were included; however, those that associated stroke with other clinical situations, or that compared specific interventions and methods of rehabilitation, were excluded. Articles that were not published in English, Portuguese or Spanish, and those that were not found even after attempting to contact the author were also excluded.

Quality assessment

The studies included were initially divided according to study design, and the longitudinal studies were evaluated for quality by adapting the Downs and Black checklist for non-randomized studies, using only the 13 items relating to assessment of cohort studies. Adaptation of the Downs and Black instrument has already been used in other reviews in order to identify relevant methodological features of observational studies (1515 Downs SA, Black N .The feasibility of creating a checklist for the assessment of the methodological quality both of randomised and non-randomised studies of health care interventions. J Epidemiol Community Health. 1998;52(6):377-84., 1616 Silva MC, Fassa AG, Domingues MR, Kriebel D. Gonalgia entre trabalhadores e fatores ocupacionais associados: uma revisão sistemática. Cad Saúde Pública. 2007;23(8):1763-75., 1717 Martins T, Ribeiro JP, Garrett C. Disability and quality of life of stroke survivors: evaluation nine months after discharge. Rev Neurol. 2006;42(11):655-9.).

Results

The initial search yielded 212 documents; of these, 40 were selected. After reading each article in full, 24 were excluded for not meeting the eligibility criteria, leaving a total of 16 articles analyzed and submitted to the data collection phase of this review (Figure 1).

Figure 1
Flowchart of the article inclusion process in the systematic review

Among the studies analyzed, 56.25% were published since 2008. The articles were listed in descending order by year of publication in Table 1, in which general data such as author/year, objective, study design, sample, participant age, instruments and results were summarized. Eight studies were cross-sectional, two of which presented results from the same Italian population. Eight studies were prospective longitudinal, of which two presented the results from one Australian cohort five and ten years after stroke.

Table 1
Characteristics of studies selected

Sample sizes ranged from 13 to 1233 subjects, with the mean being 254 participants of both sexes. The studies included adult populations of various age groups, and the mean participant age was 67 years. The moment of evaluation ranged from three months to ten years after stroke. Diagnostic criteria for definition of cases had some differences between studies: 68.7% conducted clinical examination and the patients were classified according to the International Classification of Diseases (ICD), and 50% had the diagnosis reviewed by image examination. Three studies applied scales for disease classification: Lo et al. (1818 Lo RS, Cheng JO, Wong EM, Tang WK, Wong LK, Woo J, et al. Handicap and its determinants of change in stroke survivors: one-year follow-up study . Stroke. 2008;39(1):148-53.) used the National Institute of Health Stroke Scale (NIHSS); Carod-Artal et al. (55 Carod-Artal FJ, Trizotto DS, Coral LF, Moreira CM. Determinants of quality of life in Brazilian stroke survivors. J Neurol Sci. 2009;284(1-2):63-8.) used the Trial of Org 10172 in Acute Stroke Treatment (TOAST); and Patel et al. (1919 Patel MD, Tilling K, Lawrence E, Rudd AG, Wolfe CD, McKevitt C. Relationships between long-term stroke disability, handicap and health-related quality of life. Age Ageing. 2006;35(3):273-9.) applied the Oxfordshire Community Stroke Project (OCSP). Three studies did not mention diagnostic criteria used (66 Coss P, Bell RMR, Armenteros JP, Batista LER. Índice de independencia de paciente con Accidente Vascular Encefálico. Rev Cubana Enferm. 2010;26(4):206-21., 1717 Martins T, Ribeiro JP, Garrett C. Disability and quality of life of stroke survivors: evaluation nine months after discharge. Rev Neurol. 2006;42(11):655-9., 2020 Appelros P, Nydevik I, Terént A. Living setting and utilisation of ADL assistance one year after a stroke with special reference to gender differences. Disabil Rehabil. 2006;15;28(1):43-9.).

Four articles (25%) set out to evaluate quality of life (QOL) in addition to disability, and found strong positive association between the physical domain of QOL instruments and disability (55 Carod-Artal FJ, Trizotto DS, Coral LF, Moreira CM. Determinants of quality of life in Brazilian stroke survivors. J Neurol Sci. 2009;284(1-2):63-8., 77 Cerniauskaite M, Quintas R, Koutsogeorgou E, Meucci P, Sattin D, Leonardi M, et al. Quality-of-life and disability in patients with stroke. Am J Phys Med Rehabil. 2012;91(13 Suppl 1):39-47., 1717 Martins T, Ribeiro JP, Garrett C. Disability and quality of life of stroke survivors: evaluation nine months after discharge. Rev Neurol. 2006;42(11):655-9., 1919 Patel MD, Tilling K, Lawrence E, Rudd AG, Wolfe CD, McKevitt C. Relationships between long-term stroke disability, handicap and health-related quality of life. Age Ageing. 2006;35(3):273-9.). Of the studies analyzed, 31% (five articles) presented the result of disability by means of the modified Rankin Scale (mRS) (1717 Martins T, Ribeiro JP, Garrett C. Disability and quality of life of stroke survivors: evaluation nine months after discharge. Rev Neurol. 2006;42(11):655-9., 2020 Appelros P, Nydevik I, Terént A. Living setting and utilisation of ADL assistance one year after a stroke with special reference to gender differences. Disabil Rehabil. 2006;15;28(1):43-9., 2121 Hankey GJ, Jamrozik K, Broadhurst RJ, Forbes S, Anderson CS. Long-term disability after first-ever stroke and related prognostic factors in the Perth Community Stroke Study, 1989-1990. Stroke. 2002;33(4):1034-40., 2222 Hong KS, Saver JL, Kang DW, Bae HJ, Yu KH, Koo J, et al. Years of optimum health lost due to complications after acute ischemic stroke: disability-adjusted life-years analysis. Stroke. 2010;41(8):1758-65., 2323 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(3):731-5.); 19% (three articles) by means of the International Classification of Functioning, Disease and Health (ICF), one of which used the World Health Organization Disability Assessment Schedule (WHODAS 2.0) (77 Cerniauskaite M, Quintas R, Koutsogeorgou E, Meucci P, Sattin D, Leonardi M, et al. Quality-of-life and disability in patients with stroke. Am J Phys Med Rehabil. 2012;91(13 Suppl 1):39-47., 2424 Quintas R, Cerniauskaite M, Ajovalasit D, Sattin D, Boncoraglio G, Parati EA, et al. Describing functioning, disability, and health with the International Classification of Functioning, Disability, and Health Brief Core Set for Stroke. Am J Phys Med Rehabil. 2012;91(13 Suppl 1):14-2., 2525 Martins EF, Sousa PH, Barbosa PH, Menezes LT, Costa AS. A Brazilian experience to describe functioning and disability profiles provided by combined use of ICD and ICF in chronic stroke patients at home-care. Disabil Rehabil. 2011;33(21-22):2064-74.); 19% (three articles) by means of the Katz Index of Independence in Activities of Daily Living (66 Coss P, Bell RMR, Armenteros JP, Batista LER. Índice de independencia de paciente con Accidente Vascular Encefálico. Rev Cubana Enferm. 2010;26(4):206-21., 2626 Widar M, Ahlström G. Disability after a stroke and the influence of long-term pain on everyday life. Scand Journal Caring Sci. 2002;16(3):302-10., 2727 Petrea RE, Beiser AS, Seshadri S, Kelly-Hayes M, Kase CS, Wolf PA. Gender differences in stroke incidence and poststroke disability in the Framingham heart study. Stroke. 2009;40(4):1032-7.); 12.5% (two articles) by means of the London Handicap Scale (1818 Lo RS, Cheng JO, Wong EM, Tang WK, Wong LK, Woo J, et al. Handicap and its determinants of change in stroke survivors: one-year follow-up study . Stroke. 2008;39(1):148-53., 2828 Gall SL, Dewey HM, Sturm JW, Macdonell RA, Thrift AG. Handicap 5 years after stroke in the North East Melbourne Stroke Incidence Study. Cerebrovasc Dis. 2009;27(2):123-30.); 12.5% (two articles) by means of the Barthel Index (55 Carod-Artal FJ, Trizotto DS, Coral LF, Moreira CM. Determinants of quality of life in Brazilian stroke survivors. J Neurol Sci. 2009;284(1-2):63-8., 1919 Patel MD, Tilling K, Lawrence E, Rudd AG, Wolfe CD, McKevitt C. Relationships between long-term stroke disability, handicap and health-related quality of life. Age Ageing. 2006;35(3):273-9.); and 6.25% (one article) according to the Functional Independence Measure (FIM) (2929 Lin JH, Tsai AY, Lo SK, Chang JJ, Huang MH. Predicting the grade of disability 1 year after stroke following rehabilitation. Kaohsiung J Med Sci. 2005;21(5):212-9.).

Considering functional disability as an indicator of disability measured by means of instruments such as the Katz and Barthel scales and the mRS, the result of 12 of the 16 selected articles can be assembled as follows: in the first two years after stroke, disability affected 24% to 49% of the population evaluated; three to five years after stroke, that number was between 26% and 47%; and ten years after, 46% of the population had some level of disability.

The evaluation of quality applied to the cohort studies had a mean methodological score of 10.5, and the studies that obtained the highest score were Hardie et al. (2323 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(3):731-5.) and Lin et al. (2929 Lin JH, Tsai AY, Lo SK, Chang JJ, Huang MH. Predicting the grade of disability 1 year after stroke following rehabilitation. Kaohsiung J Med Sci. 2005;21(5):212-9.). The score of each study can be found in Table 1.

Discussion

Measurement instruments and results of disability

The studies applied various measurement instruments. Appelros et al. (2020 Appelros P, Nydevik I, Terént A. Living setting and utilisation of ADL assistance one year after a stroke with special reference to gender differences. Disabil Rehabil. 2006;15;28(1):43-9.) used the Barthel Index, but presented the result of the disability by means of the mRS, concluding that 37% of the cohort was disable (mRS 3-6). Martins et al. (1717 Martins T, Ribeiro JP, Garrett C. Disability and quality of life of stroke survivors: evaluation nine months after discharge. Rev Neurol. 2006;42(11):655-9.) used the same methodology, and concluded that 36% of the sample was independent in Basic Activities of Daily Living (BADL) through Barthel Index, but 47% had disability (mRS ≥ 3).

Hong et al. (2222 Hong KS, Saver JL, Kang DW, Bae HJ, Yu KH, Koo J, et al. Years of optimum health lost due to complications after acute ischemic stroke: disability-adjusted life-years analysis. Stroke. 2010;41(8):1758-65.) applied the disability-adjusted life year (DALY) measure to survivors of stroke, and used the results of the mRS for the calculation. As 35% of participants were disabled (mRS 3-6), the mean number of years of life lost due to disability was 3.82 (CI 95% 3.68 to 3.96). Hankey et al. (2121 Hankey GJ, Jamrozik K, Broadhurst RJ, Forbes S, Anderson CS. Long-term disability after first-ever stroke and related prognostic factors in the Perth Community Stroke Study, 1989-1990. Stroke. 2002;33(4):1034-40.) and Hardie et al. (2323 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(3):731-5.) also used the modified Rankin Scale (mRS) to present the results of disability.

Of the seven studies that applied the Barthel Index (BI), five used a modified version of the instrument with scoring from 0 to 20 (1717 Martins T, Ribeiro JP, Garrett C. Disability and quality of life of stroke survivors: evaluation nine months after discharge. Rev Neurol. 2006;42(11):655-9., 1818 Lo RS, Cheng JO, Wong EM, Tang WK, Wong LK, Woo J, et al. Handicap and its determinants of change in stroke survivors: one-year follow-up study . Stroke. 2008;39(1):148-53., 1919 Patel MD, Tilling K, Lawrence E, Rudd AG, Wolfe CD, McKevitt C. Relationships between long-term stroke disability, handicap and health-related quality of life. Age Ageing. 2006;35(3):273-9., 2121 Hankey GJ, Jamrozik K, Broadhurst RJ, Forbes S, Anderson CS. Long-term disability after first-ever stroke and related prognostic factors in the Perth Community Stroke Study, 1989-1990. Stroke. 2002;33(4):1034-40., 2828 Gall SL, Dewey HM, Sturm JW, Macdonell RA, Thrift AG. Handicap 5 years after stroke in the North East Melbourne Stroke Incidence Study. Cerebrovasc Dis. 2009;27(2):123-30.). Despite being the most applied instrument among the studies, only two presented the results of disability using the BI: the English cohort of Patel et al. (1919 Patel MD, Tilling K, Lawrence E, Rudd AG, Wolfe CD, McKevitt C. Relationships between long-term stroke disability, handicap and health-related quality of life. Age Ageing. 2006;35(3):273-9.) showed 12% with severe disability (BI < 9), 14% moderate (BI 1010 Alves LC, Leite IC, Machado CJ. Conceituando e mensurando a incapacidade funcional da população idosa: uma revisão de literatura. Ciênc Saúde Coletiva. 2008;13(4):1199-207.

11 Baptista DBDA. Idosos no município de São Paulo: expectativa de vida ativa e perfis multidimensionais de incapacidade a partir da SABE [dissertação]. Belo Horizonte: Universidade Federal de Minas Gerais; 2003.

12 Veerbeek JM, Kwakkel G, Van Wegen EE, Ket JC, Heymans MW. Early prediction of outcome of activities of daily living after stroke: a systematic review. Stroke. 2011;42(5):1482-8.

13 Tse T, Douglas J, Lentin P, Carey L. Measuring participation after stroke: a review of frequently used tools. Arch Phys Med Rehabil. 2013;94(1):177-92.
-1414 Castro AA, Saconato H, Guidugli F, Clarck OAC. Curso de revisão sistemática e metanálise [internet]. São Paulo: LED-DIS/UNIFESP; 2002 [cited 2015, Jun 2]. Available from: http://www.virtual.epm.br/cursos/metanalise
http://www.virtual.epm.br/cursos/metanal...
), 34% mild (1515 Downs SA, Black N .The feasibility of creating a checklist for the assessment of the methodological quality both of randomised and non-randomised studies of health care interventions. J Epidemiol Community Health. 1998;52(6):377-84.

16 Silva MC, Fassa AG, Domingues MR, Kriebel D. Gonalgia entre trabalhadores e fatores ocupacionais associados: uma revisão sistemática. Cad Saúde Pública. 2007;23(8):1763-75.

17 Martins T, Ribeiro JP, Garrett C. Disability and quality of life of stroke survivors: evaluation nine months after discharge. Rev Neurol. 2006;42(11):655-9.

18 Lo RS, Cheng JO, Wong EM, Tang WK, Wong LK, Woo J, et al. Handicap and its determinants of change in stroke survivors: one-year follow-up study . Stroke. 2008;39(1):148-53.
-1919 Patel MD, Tilling K, Lawrence E, Rudd AG, Wolfe CD, McKevitt C. Relationships between long-term stroke disability, handicap and health-related quality of life. Age Ageing. 2006;35(3):273-9.), whereas 39% were independent (BI = 20). The Brazilian study by Carod-Artal et al. (55 Carod-Artal FJ, Trizotto DS, Coral LF, Moreira CM. Determinants of quality of life in Brazilian stroke survivors. J Neurol Sci. 2009;284(1-2):63-8.) used the original scoring proposal from 0 to 100, and determined that 34% of the subjects were independent, 31% had severe disability (BI ≤ 60), and 35% moderate disability (BI = 65-90).

The other studies used the BI to classify level of dependence, including Lo et al. (1818 Lo RS, Cheng JO, Wong EM, Tang WK, Wong LK, Woo J, et al. Handicap and its determinants of change in stroke survivors: one-year follow-up study . Stroke. 2008;39(1):148-53.), who showed results of disability with the London Handicap Scale, but classified dependence in two levels: 24% had BI < 14, which is dependency in more than one BADL, and 30% were in the Barthel range 15-19.

The Australian studies by Gall et al. (2828 Gall SL, Dewey HM, Sturm JW, Macdonell RA, Thrift AG. Handicap 5 years after stroke in the North East Melbourne Stroke Incidence Study. Cerebrovasc Dis. 2009;27(2):123-30.) and Hankey et al. (2121 Hankey GJ, Jamrozik K, Broadhurst RJ, Forbes S, Anderson CS. Long-term disability after first-ever stroke and related prognostic factors in the Perth Community Stroke Study, 1989-1990. Stroke. 2002;33(4):1034-40.) evaluated people five years after the first stroke, and also used other instruments to present disability; however, they applied the BI and defined as dependent those subjects who had a score < 20, and found 36% and 47% of their subjects dependent in some BADL, respectively.

Petrea et al. (2727 Petrea RE, Beiser AS, Seshadri S, Kelly-Hayes M, Kase CS, Wolf PA. Gender differences in stroke incidence and poststroke disability in the Framingham heart study. Stroke. 2009;40(4):1032-7.), Coss et al. (66 Coss P, Bell RMR, Armenteros JP, Batista LER. Índice de independencia de paciente con Accidente Vascular Encefálico. Rev Cubana Enferm. 2010;26(4):206-21.) and Widar et al. (2626 Widar M, Ahlström G. Disability after a stroke and the influence of long-term pain on everyday life. Scand Journal Caring Sci. 2002;16(3):302-10.) used the Katz Index in their reviews, and respectively found that 45%, 41% and 46% of their samples was dependent on at least one of the six activities evaluated. Lin et al. (2929 Lin JH, Tsai AY, Lo SK, Chang JJ, Huang MH. Predicting the grade of disability 1 year after stroke following rehabilitation. Kaohsiung J Med Sci. 2005;21(5):212-9.) used the Functional Independence Measure (FIM), and classified 59% of the sample with severe and very severe disability (mean score of 65), and 41% with moderate and mild disability (mean score of 87). In addition to evaluating the need for assistance with BADL and mobility, the FIM also evaluates communication and cognition.

The International Classification of Functioning, Disability and Health (ICF) was used in three studies (77 Cerniauskaite M, Quintas R, Koutsogeorgou E, Meucci P, Sattin D, Leonardi M, et al. Quality-of-life and disability in patients with stroke. Am J Phys Med Rehabil. 2012;91(13 Suppl 1):39-47., 2424 Quintas R, Cerniauskaite M, Ajovalasit D, Sattin D, Boncoraglio G, Parati EA, et al. Describing functioning, disability, and health with the International Classification of Functioning, Disability, and Health Brief Core Set for Stroke. Am J Phys Med Rehabil. 2012;91(13 Suppl 1):14-2., 2525 Martins EF, Sousa PH, Barbosa PH, Menezes LT, Costa AS. A Brazilian experience to describe functioning and disability profiles provided by combined use of ICD and ICF in chronic stroke patients at home-care. Disabil Rehabil. 2011;33(21-22):2064-74.). Quintas et al. (2424 Quintas R, Cerniauskaite M, Ajovalasit D, Sattin D, Boncoraglio G, Parati EA, et al. Describing functioning, disability, and health with the International Classification of Functioning, Disability, and Health Brief Core Set for Stroke. Am J Phys Med Rehabil. 2012;91(13 Suppl 1):14-2.) showed that body function problems most frequently reported by subjects that suffer from stroke are: difficulties with memory (more than 50% of the sample), attention (approximately 50%) and muscle function strength (50% of the sample). Furthermore, 47% reported moderate to severe gait impairment. Martins et al. (2525 Martins EF, Sousa PH, Barbosa PH, Menezes LT, Costa AS. A Brazilian experience to describe functioning and disability profiles provided by combined use of ICD and ICF in chronic stroke patients at home-care. Disabil Rehabil. 2011;33(21-22):2064-74.) observed that 34% of subjects had difficulty in functions related to movement, and 52% had limitations in activities and participation, especially in domestic activities.

This result corroborates Alves (1010 Alves LC, Leite IC, Machado CJ. Conceituando e mensurando a incapacidade funcional da população idosa: uma revisão de literatura. Ciênc Saúde Coletiva. 2008;13(4):1199-207.), who also showed absence of a well-defined standard to measure disability. The terms “disability” and “level of dependency” were constantly taken alternatively in the articles, instruments such as Barthel and Katz, which were developed to assess level of dependence in ADL, were used to present the results of disability. Guccione (3030 Guccione AA. Fisioterapia geriátrica. Rio de Janeiro: Guanabara Koogan; 2002. p. 114-24.) and Alves (3131 Alves LC. Condições de saúde e a incapacidade funcional dos idosos no Brasil em 2003 [tese]. Rio de Janeiro: Fundação Oswaldo Cruz; 2008.) point out that these scales of difficulty and dependence are good instruments for measuring functional disability, which is an aspect of disability. This result shows that there is a preference in the literature for measuring disability according to physical performance in daily activities, a result already observed by Cerniauskaite et al. (77 Cerniauskaite M, Quintas R, Koutsogeorgou E, Meucci P, Sattin D, Leonardi M, et al. Quality-of-life and disability in patients with stroke. Am J Phys Med Rehabil. 2012;91(13 Suppl 1):39-47.). However, the approach of the ICF warns that disability cannot only be evaluated by dependence in ADL. The WHODAS 2.0, a disability assessment scale created by the WHO, evaluates the individual’s functioning in six areas of activity: understanding and communicating, physical mobility, self-care, living with people, life activities and participation in society. It seems to be an instrument capable of covering all domains of disability, but because of its recent publication, it had little reference in the studies (3232 Federici S, Meloni F, Mancini A, Lauriola M, Olivetti Belardinelli M. World Health Organization Disability Assessment Schedule II: Contribution to the Italian validation. Disabil Rehabil. 2009;31(7):553-64.).

Variables associated with disability and types of analysis

The results of four cohorts brought variables that were predictive or associated with disability. Gall et al. (2828 Gall SL, Dewey HM, Sturm JW, Macdonell RA, Thrift AG. Handicap 5 years after stroke in the North East Melbourne Stroke Incidence Study. Cerebrovasc Dis. 2009;27(2):123-30.), by means of multivariate regression analysis, found that five years after stroke, increasing age and the recurrence of stroke (P < 0.01) were associated with greater disability. The Perth cohort also identified advanced age (OR = 5.7 in the age range 75-84; CI 95% 1.7-18.9), stroke recurrence (OR = 14.4, CI 95% CI 3.3-63), and moderate hemiparesis (OR = 3.4; CI 95% 1.2-9.5) as prognostic factors of disability, using logistic regression analysis adjusting the sex (2323 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(3):731-5.).

Using the logistic regression model, Lin et al. (2929 Lin JH, Tsai AY, Lo SK, Chang JJ, Huang MH. Predicting the grade of disability 1 year after stroke following rehabilitation. Kaohsiung J Med Sci. 2005;21(5):212-9.) found that bilateral compromise (OR = 10.8, p < 0:02) and low FIM score (OR = 7.6, p < 0.008) are the main variables associated with disability. Lo et al. (1818 Lo RS, Cheng JO, Wong EM, Tang WK, Wong LK, Woo J, et al. Handicap and its determinants of change in stroke survivors: one-year follow-up study . Stroke. 2008;39(1):148-53.) used the multilevel analysis and concluded that depression, advancing age and level of dependence are strongly associated with disability and severity (p < 0.001).

Petrea et al. (2727 Petrea RE, Beiser AS, Seshadri S, Kelly-Hayes M, Kase CS, Wolf PA. Gender differences in stroke incidence and poststroke disability in the Framingham heart study. Stroke. 2009;40(4):1032-7.) explored gender difference in post-stroke disability in Framingham’s cohort, by means of bivariate analysis and logistic regression for variable adjustments considered risk factors for stroke according to Framingham. The authors found that women are four times more likely to be dependent prior to stroke than men (OR = 4.3, p < 0.01), and six months after stroke the chances of dependency remain higher in women (OR = 3.7, p < 0.01).

Five cohorts assessed the institutionalization rate of stroke survivors. Appelros et al. (2020 Appelros P, Nydevik I, Terént A. Living setting and utilisation of ADL assistance one year after a stroke with special reference to gender differences. Disabil Rehabil. 2006;15;28(1):43-9.) aimed to define changes in living scenario, and found that prior to stroke, 13% lived in special housing, and one year after stroke that number had risen to 20%. The Perth cohort showed that five years after stroke, 17.7% of its members were institutionalized, and ten years after, 15% of the surviving members were institutionalized (2121 Hankey GJ, Jamrozik K, Broadhurst RJ, Forbes S, Anderson CS. Long-term disability after first-ever stroke and related prognostic factors in the Perth Community Stroke Study, 1989-1990. Stroke. 2002;33(4):1034-40., 2323 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(3):731-5.). Lo et al. (1818 Lo RS, Cheng JO, Wong EM, Tang WK, Wong LK, Woo J, et al. Handicap and its determinants of change in stroke survivors: one-year follow-up study . Stroke. 2008;39(1):148-53.) found that 19% of its population was institutionalized three months after stroke. The study that explored gender differences in the Framingham cohort found that women are 3.5 times more likely (p < 0.01) to be institutionalized six months after stroke than men (rate of 35% for women and 10% for men) (2727 Petrea RE, Beiser AS, Seshadri S, Kelly-Hayes M, Kase CS, Wolf PA. Gender differences in stroke incidence and poststroke disability in the Framingham heart study. Stroke. 2009;40(4):1032-7.).

Disability in time

Functional capacity decreases with time, whereas the risk of developing a chronic condition increases (3333 Organização Mundial da Saúde. Envelhecimento ativo: uma política de saúde. Trad. Suzana Gontijo. Brasília: Organização Pan-Americana da Saúde; 2005.). The debilitating process proceeds through the evolution of the chronic condition associated with other factors such as lifestyle, behavior, and biological, social and demographic characteristics (3434 Brasil. Ministério da Saúde. Secretaria de Atenção à Saúde. Envelhecimento e saúde da pessoa idosa. Brasília: Ministério da Saúde; 2006.).

Four cohorts followed the patients during the first year after stroke. Petrea et al. (2727 Petrea RE, Beiser AS, Seshadri S, Kelly-Hayes M, Kase CS, Wolf PA. Gender differences in stroke incidence and poststroke disability in the Framingham heart study. Stroke. 2009;40(4):1032-7.) found that three months after the event, the level of incapacity was greater than when compared after six months. Lo et al. (1818 Lo RS, Cheng JO, Wong EM, Tang WK, Wong LK, Woo J, et al. Handicap and its determinants of change in stroke survivors: one-year follow-up study . Stroke. 2008;39(1):148-53.) had a similar result, and concluded that its participants were less disabled after one year than in the third month, suggesting that functionality can improve between the third and twelfth month after stroke. This finding is consistent with previous articles that report a recovery between the third and sixth month after stroke (3535 Jorgensen HS, Nakayama H, Raaschou HO, et al. Outcome and time course of recovery in stroke. Part 1: Outcome. The Copenhagen Stroke Study. Arch Phys Rehabil. 1995;76(5):399-405., 3636 Wade DT, Hewer RL. Functional abilities after stroke: measurement, natural history and prognosis. J Neurol Neurosurg Psychiatry. 1987;50(2):177-82.).

Most of the cross-sectional studies did not define the exact moment after stroke, and assessed subjects at various times (55 Carod-Artal FJ, Trizotto DS, Coral LF, Moreira CM. Determinants of quality of life in Brazilian stroke survivors. J Neurol Sci. 2009;284(1-2):63-8., 66 Coss P, Bell RMR, Armenteros JP, Batista LER. Índice de independencia de paciente con Accidente Vascular Encefálico. Rev Cubana Enferm. 2010;26(4):206-21., 77 Cerniauskaite M, Quintas R, Koutsogeorgou E, Meucci P, Sattin D, Leonardi M, et al. Quality-of-life and disability in patients with stroke. Am J Phys Med Rehabil. 2012;91(13 Suppl 1):39-47., 2424 Quintas R, Cerniauskaite M, Ajovalasit D, Sattin D, Boncoraglio G, Parati EA, et al. Describing functioning, disability, and health with the International Classification of Functioning, Disability, and Health Brief Core Set for Stroke. Am J Phys Med Rehabil. 2012;91(13 Suppl 1):14-2.), while 19%, four cohorts, investigated long-term disability. Hankey et al. (2121 Hankey GJ, Jamrozik K, Broadhurst RJ, Forbes S, Anderson CS. Long-term disability after first-ever stroke and related prognostic factors in the Perth Community Stroke Study, 1989-1990. Stroke. 2002;33(4):1034-40.) stated that disability and institutionalization are the most common long-term results, affecting one-third and one-seventh of the survivors respectively. These authors also consider that the most important modifiable prognostic factors for these results are the low levels of physical activity and recurrence of stroke. Patel et al. (1919 Patel MD, Tilling K, Lawrence E, Rudd AG, Wolfe CD, McKevitt C. Relationships between long-term stroke disability, handicap and health-related quality of life. Age Ageing. 2006;35(3):273-9.) found that five years after stroke, 36% of the survivors of their cohort were dependent in some way. Gall et al. (2828 Gall SL, Dewey HM, Sturm JW, Macdonell RA, Thrift AG. Handicap 5 years after stroke in the North East Melbourne Stroke Incidence Study. Cerebrovasc Dis. 2009;27(2):123-30.) found a similar result, where 47% of the survivors were dependent for some ADL after five years.

Evaluation of methodological quality and limitations of the study

The methodological variation between the studies, such as period evaluated, measurement instruments used and the form of data presentation made it difficult to gather the results of the 16 articles. Although the eight longitudinal studies evaluated had good methodological quality within the criteria of Downs and Black, the studies with cross-sectional design were not evaluated due to lack of scale or criterion for this purpose, which can be considered a limitation of this study. In addition, four articles were excluded from the study, two because they were not found, and two due to language.

Conclusion

This systematic review revealed heterogeneity in the literature when the subject is disability among stroke survivors. Most studies evaluated aspects of disability, failing to include all domains involved in this phenomenon. Furthermore, there is still no consensus as to the instrument to be used.

Wagering on functional disability as a reliable indicator of disability, it is possible to conclude that 24% to 49% of the population that survives stroke has some level of disability, which can vary according to age, stroke recurrence, time of evaluation and instrument applied. Most of the studies present disability by means of instruments that measure physical performance in activities of daily living, affirming functional disability as the most used indicator to define disability in people after suffering stroke. The Barthel Index was the instrument most used in the articles; however, the modified Rankin Scale was preferred to present results of disability.

Annex 1

Data collection form

Information of studies included

Title:

Publication date:

References:

Methods

Research Question:

Objective:

Study type:

Instrument used to determine outcomes:

Study location:

Sample representation:

Calculation of statistical power:

Participants

Age:

Sex:

Inclusion criteria:

Exclusion criteria:

Diagnostic criteria:

Number of participants:

Outcomes

Results

References

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    Patel MD, Tilling K, Lawrence E, Rudd AG, Wolfe CD, McKevitt C. Relationships between long-term stroke disability, handicap and health-related quality of life. Age Ageing. 2006;35(3):273-9.
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    Appelros P, Nydevik I, Terént A. Living setting and utilisation of ADL assistance one year after a stroke with special reference to gender differences. Disabil Rehabil. 2006;15;28(1):43-9.
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    Martins EF, Sousa PH, Barbosa PH, Menezes LT, Costa AS. A Brazilian experience to describe functioning and disability profiles provided by combined use of ICD and ICF in chronic stroke patients at home-care. Disabil Rehabil. 2011;33(21-22):2064-74.
  • 26
    Widar M, Ahlström G. Disability after a stroke and the influence of long-term pain on everyday life. Scand Journal Caring Sci. 2002;16(3):302-10.
  • 27
    Petrea RE, Beiser AS, Seshadri S, Kelly-Hayes M, Kase CS, Wolf PA. Gender differences in stroke incidence and poststroke disability in the Framingham heart study. Stroke. 2009;40(4):1032-7.
  • 28
    Gall SL, Dewey HM, Sturm JW, Macdonell RA, Thrift AG. Handicap 5 years after stroke in the North East Melbourne Stroke Incidence Study. Cerebrovasc Dis. 2009;27(2):123-30.
  • 29
    Lin JH, Tsai AY, Lo SK, Chang JJ, Huang MH. Predicting the grade of disability 1 year after stroke following rehabilitation. Kaohsiung J Med Sci. 2005;21(5):212-9.
  • 30
    Guccione AA. Fisioterapia geriátrica. Rio de Janeiro: Guanabara Koogan; 2002. p. 114-24.
  • 31
    Alves LC. Condições de saúde e a incapacidade funcional dos idosos no Brasil em 2003 [tese]. Rio de Janeiro: Fundação Oswaldo Cruz; 2008.
  • 32
    Federici S, Meloni F, Mancini A, Lauriola M, Olivetti Belardinelli M. World Health Organization Disability Assessment Schedule II: Contribution to the Italian validation. Disabil Rehabil. 2009;31(7):553-64.
  • 33
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Publication Dates

  • Publication in this collection
    Apr-Jun 2015

History

  • Received
    29 May 2014
  • Accepted
    03 Mar 2015
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