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Authors
Advisor(s)
Abstract(s)
Introdução: A Espondilite Anquilosante (EA), é uma doença inflamatória osteoarticular
crónica e sistémica de etiologia desconhecida, que, clinicamente se carateriza por um
acometimento progressivo das articulações sacroilíacas e esqueleto axial, resultando em
imobilidade e rigidez articular. A perda progressiva da Capacidade Funcional aleada á
marcada sintomatologia, levam a que o portador desta patologia, vá diminuindo a sua
atividade física, se sinta mais fatigado, diminuindo consequentemente a sua qualidade de
vida.
Objectivo: Estabelecer quais os determinantes sociodemográficos/clínicos mais
significativos da Capacidade Funcional dos utentes com Espondilite Anquilosante, numa
lógica de produção de conhecimentos que facilite o desenho de programas de intervenção
formativos e informativos que visem a promoção da qualidade de vida. Simultaneamente
contribuir para a adaptação e validação cultural do Índice Funcional de Dougados.
Método: Num estudo transversal, de natureza quantitativa, inquirimos uma amostra de
128 indivíduos com EA, residentes no território nacional, dos quais 72 indivíduos eram do
sexo masculino e 56 indivíduos do sexo feminino, pertencentes às Associações Nacionais de
Espondilite Anquilosante (ANEA) de Viseu, Ovar, Pombal e Lisboa, e também aos serviços
de reumatologia e medicina física de reabilitação, dos Hospitais de Viseu, Braga e Aveiro. A
informação foi obtida através de um instrumento de colheita de dados de auto preenchimento,
o qual incorpora medidas de avaliação aferidas e validadas para a população portuguesa.
Resultados: Constatou-se que o perfil sociodemográfico e profissional dos utentes com
EA, revela ser, maioritariamente, do género masculino (56,2%), com cerca de 50 anos de
idade, casado ou em união de facto (82,8%), a residir em meio urbano (57,0%), com o
1ºCiclo do ensino básico (28.1%) e com atividade profissional (61.7%), não tendo faltado ao
trabalho no último ano (68,8%). Relativamente ao perfil clínico constatou-se que, quanto ao
tempo de diagnóstico da EA, a média é de aproximadamente 15,40 anos e ao tempo de início
dos sintomas de EA, o tempo médio aumenta para aproximadamente 20 anos. A maioria é
seguida pelo Reumatologista (75,8%), para aliviar a sintomatologia, mais de metade da
amostra recorre a anti-inflamatórios, (65,6%) e apenas cerca de cerca de 17.2% faz
medicação biológica, cerca de 72,7% está inserido na Associação Nacional de Espondilite
Anquilosante (ANEA) e mais de metade não tem familiares com EA (67,2%).
Conclusões: Destacamos particularmente a importância da realização de campanhas de
prevenção e sensibilização das pessoas sobre esta patologia, onde se responsabilize o
portador de EA pela sua doença, de modo a evitar a sua evolução para maiores incapacidades
funcionais. Com este estudo, propusemo-nos também dar um contributo para a adaptacão e
validação cultural de um instrumento de medida, que avalia a Capacidade Funcional em
doentes com EA, considerando os valores apresentados é possível disponibilizar um
instrumento de medida da capacidade funcional em doentes com EA, com um contributo de
adaptação á realidade portuguesa.
Palavras-Chave: Espondilite Anquilosante; Capacidade Funcional; Índice Funcional de
Dougados.
ABSTRACT Background: Ankylosing spondylitis (AS) is a chronic musculoskeletal and systemic inflammatory disease of unknown etiology that is clinically characterized by a progressive involvement of the sacroiliac joints and axial skeleton, resulting in immobility and joint stiffness. The progressive loss of functional capacity associated with marked symptoms will lead to the patient of this condition, feel more fatigued in physical activity, and thereby decreasing their quality of life. Objective: To determine which sociodemographic determinants/most significant clinical functional capacity of patients with Ankylosing Spondylitis, a logic of knowledge production that facilitates the design of training and information of intervention programs that aim to promote quality of life programs, while contributing to the cultural adaptation and validation of the Dougados Functional Index. Method: In a cross-sectional study of a quantitative nature, inquire a sample of 128 individuals with AS, resident in the national territory, of which 72 individuals were males and 56 females, belonging to National Associations of Ankylosing Spondylitis (ANEA) of Viseu, Ovar, Pombal and Lisbon, and also the services of rheumatology and physical medicine rehabilitation, Hospitals of Viseu, Braga and Aveiro. The information was obtained through a data collection instrument for self fulfillment, which incorporates assessment measures assessed and validated for the Portuguese population Results: It was found that the socio-demographic and professional profile of patients with EA reveals being mostly male (56,2%), with about 50 years of age, married or in consensual union (82,8%), residing in urban areas (57,0%), with the 1st cycle of basic education (28,1%) and occupation (61,7%), having not missed work in the last year (68,8%) . Regarding the clinical profile was found that, for the time of diagnosis of EA, the average is approximately 15,40 years and the time of onset of AE , the average time increases to approximately 20 years, the majority is followed by rheumatologist (75,8%), to relieve symptoms , more than half of the sample uses anti - inflammatory drugs (65,6 % ) and only about about 17,2% is organic medication, about 72,7% is included in the National Association of Ankylosing Spondylitis (ANEA ) and more than half are not familiar with EA (67,2%). Conclusions : We emphasize, particularly, the importance of conducting prevention and educating people about this disease, and each bearer of EA must take his resonsibility for their illness campaigns in order to prevent its progression to greater functional disability. With this study, we proposed to contribute to the cultural adaptation and validation of a measuring instrument, which assesses the functional capacity in patients with AS, whereas the figures presented, it is possible to provide an instrument for measuring functional capacity in patients with EA, with a contribution of adaptation to the Portuguese reality. Keywords : Ankylosing Spondylitis ; Functional Capacity; Dougados Functional Index.
ABSTRACT Background: Ankylosing spondylitis (AS) is a chronic musculoskeletal and systemic inflammatory disease of unknown etiology that is clinically characterized by a progressive involvement of the sacroiliac joints and axial skeleton, resulting in immobility and joint stiffness. The progressive loss of functional capacity associated with marked symptoms will lead to the patient of this condition, feel more fatigued in physical activity, and thereby decreasing their quality of life. Objective: To determine which sociodemographic determinants/most significant clinical functional capacity of patients with Ankylosing Spondylitis, a logic of knowledge production that facilitates the design of training and information of intervention programs that aim to promote quality of life programs, while contributing to the cultural adaptation and validation of the Dougados Functional Index. Method: In a cross-sectional study of a quantitative nature, inquire a sample of 128 individuals with AS, resident in the national territory, of which 72 individuals were males and 56 females, belonging to National Associations of Ankylosing Spondylitis (ANEA) of Viseu, Ovar, Pombal and Lisbon, and also the services of rheumatology and physical medicine rehabilitation, Hospitals of Viseu, Braga and Aveiro. The information was obtained through a data collection instrument for self fulfillment, which incorporates assessment measures assessed and validated for the Portuguese population Results: It was found that the socio-demographic and professional profile of patients with EA reveals being mostly male (56,2%), with about 50 years of age, married or in consensual union (82,8%), residing in urban areas (57,0%), with the 1st cycle of basic education (28,1%) and occupation (61,7%), having not missed work in the last year (68,8%) . Regarding the clinical profile was found that, for the time of diagnosis of EA, the average is approximately 15,40 years and the time of onset of AE , the average time increases to approximately 20 years, the majority is followed by rheumatologist (75,8%), to relieve symptoms , more than half of the sample uses anti - inflammatory drugs (65,6 % ) and only about about 17,2% is organic medication, about 72,7% is included in the National Association of Ankylosing Spondylitis (ANEA ) and more than half are not familiar with EA (67,2%). Conclusions : We emphasize, particularly, the importance of conducting prevention and educating people about this disease, and each bearer of EA must take his resonsibility for their illness campaigns in order to prevent its progression to greater functional disability. With this study, we proposed to contribute to the cultural adaptation and validation of a measuring instrument, which assesses the functional capacity in patients with AS, whereas the figures presented, it is possible to provide an instrument for measuring functional capacity in patients with EA, with a contribution of adaptation to the Portuguese reality. Keywords : Ankylosing Spondylitis ; Functional Capacity; Dougados Functional Index.
Description
Keywords
Avaliação da deficiência Espondilite anquilosante Índice de gravidade de doença Promoção da saúde Psicometria Disability evaluation Health promotion Psychometrics Severity of illness index Spondylitis, ankylosing