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Fatores psicossociais no doente com lúpus eritematoso sistémico (LES)
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Nos últimos anos tem se dado mais importância ao estudo dos aspectos neuropsiquiátricos e psiquiátricos no LES, nomeadamente à depressão, descurando investigações sobre os fatores psicossociais nesta doença. A associação entre as variáveis clínicas e fatores psicossociais tem sido controversa; o presente trabalho estuda a influência dos fatores psicossociais nos doentes com LES, tentando colmatar algumas lacunas do conhecimento através de um modelo teórico-clínico. Como objetivos procurou-se caraterizar psicossocialmente estes doentes, avaliar os fatores psicossociais em diferentes fases da doença, bem como a sua estabilidade, e identificar os fatores psicossociais que estão associados às variáveis clínicas do LES. A amostra foi constituída por 100 doentes com LES, avaliada em dois momentos; 45 doentes não participaram no segundo momento. Os doentes foram observados em consultas especializadas para o LES no serviço público de saúde e comparados com um grupo de indivíduos saudáveis emparelhados, recolhidos na população portuguesa. Todos os doentes foram entrevistados para os acontecimentos de vida e dificuldades mantidas (LEDS), preenchendo de seguida os questionários autopreenchidos: TAS-20, EVA, HADS, NEO-FFI, ESSS, EPS, BSI, STAXI e SF-36. Os doentes eram avaliados pelos médicos que os acompanhavam, nessa semana, para a atividade da doença (SLEDAI), lesões irreversíveis (SLICC) e tempo de evolução. Observámos um impacto significativo do stress nestes doentes, seja pela elevada perceção de stress, seja pelos acontecimentos de vida e dificuldades mantidas. Relativamente aos outros fatores psicossociais, os doentes com LES exibiam: dificuldades relacionais marcadas, caracterizadas pela presença de níveis elevados de ansiedade na vinculação, características alexitímicas acentuadas em 49% dos doentes, bem como um nível elevado de neuroticismo e comprometimento a nível da qualidade de vida. Estes doentes também apresentavam níveis elevados de sintomatologia psicopatológica, nomeadamente sintomas depressivos, sintomas ansiosos e somatização. A prevalência de comprometimento dos fatores psicossociais e sintomas psicopatológicos mantinha-se estável nos dois momentos, não existindo diferenças estatisticamente significativas para os dois momentos nessas variáveis. Se, no primeiro momento, só se observou uma correlação significativa entre o índice de atividade da doença e os acontecimentos de vida, no segundo momento, observámos que, além dessa associação, a alexitimia, a perceção de stress, neuroticismo e sintomas psicopatológicos se correlacionavam com o índice de atividade da doença. O nosso estudo, que confirmou o modelo teórico-clínico proposto, realça a importância dos fatores psicossociais nos doentes com LES, a sua influência na doença, na sua evolução e tratamento, e identifica-os como aspetos constitucionais dos doentes. A importância de uma abordagem mais abrangente incluindo outros aspetos além da vivência física do doente (considerando fatores de personalidade, a forma como se relaciona com os outros, bem como a forma como regula as emoções e lida com o stress), é central e essencial na abordagem ao doente com LES. Este estudo chama a atenção para a relevância de uma vigilância atenta relativamente aos acontecimentos de vida, fatores de personalidade e aspetos relacionais na relação com o doente, com vista a uma mais eficaz intervenção junto dos doentes e profissionais de saúde.
Most recent studies on SLE focus on neuropsychiatric and psychiatric aspects, specifically on depression, but they neglect research on the relevant role of psychosocial factors. The association between clinical variables and psychosocial factors has been controversial; the present work studies the influence of psychosocial factors in patients with SLE, trying to fill some gaps in knowledge through a theoretical and clinical model. This study aimed at characterizing psychosocially these patients, assessing psychosocial factors at different stages of the disease, as well as its stability, and identifying psychosocial factors that are associated to clinical variables of SLE. The sample was constituted by 100 patients with SLE, evaluated at two moments, in which 45 patients did not participate in the second phase. Patients were observed in specialized consultations for LES in the public health system and compared with a matched group of healthy volunteer subjects collected in the Portuguese population. All patients were assessed by means of clinical interview, life events interview (LEDS) and by the following questionnaires: TAS-20, AAS –R, HADS, NEO-FFI, SPS, ESSS, STAXI, BSI and SF-36. SLE patient’s clinical and laboratorial evaluation was performed by computerized indicators of activity (SLEDAI), of accumulated damage (SLICC/ACR Damage Index), length of disease and therapy. We observed a significant impact of stress in these patients, caused by a high perception of stress, life events and maintained difficulties. Other psychosocial factors of patients with SLE include: marked relational difficulties, characterized by the presence of high anxiety levels in attachment, accentuated alexithymia featured in 49% of these patients, as well as a high level of neuroticism and impaired quality of life. These patients also exhibited high levels of psychopathological symptoms, including depressive symptoms, anxiety symptoms and somatization. The prevalence of impaired psychosocial factors and psychopathological symptoms remained stable in the two moments, with no statistically significant differences for the two moments in these variables. In the first moment, we only observed a significant correlation between the activity index of the disease and life events. In the second moment, we observed that, beside this association, we also reported a correlation between alexithymia, the perception of stress, neuroticism and psychopathological symptoms with the activity index of the disease. Our study confirmed the theoretical and clinical model proposed, emphasizing the importance of psychosocial factors in patients with SLE, the influence it has on their disease progression and treatment, but also as the patient´s constitutional aspects. The importance of a comprehensive approach including other aspects beyond the patient´s physical domain (considering personality factors, relational aspects and how one regulates emotions and deal with stress) is central and essential in dealing with SLE patients. This study highlights the importance of careful monitoring for life events, personality factors and relational aspects in the relationship with SLE patients, potentiating a more effective intervention with patients and health professionals.
Most recent studies on SLE focus on neuropsychiatric and psychiatric aspects, specifically on depression, but they neglect research on the relevant role of psychosocial factors. The association between clinical variables and psychosocial factors has been controversial; the present work studies the influence of psychosocial factors in patients with SLE, trying to fill some gaps in knowledge through a theoretical and clinical model. This study aimed at characterizing psychosocially these patients, assessing psychosocial factors at different stages of the disease, as well as its stability, and identifying psychosocial factors that are associated to clinical variables of SLE. The sample was constituted by 100 patients with SLE, evaluated at two moments, in which 45 patients did not participate in the second phase. Patients were observed in specialized consultations for LES in the public health system and compared with a matched group of healthy volunteer subjects collected in the Portuguese population. All patients were assessed by means of clinical interview, life events interview (LEDS) and by the following questionnaires: TAS-20, AAS –R, HADS, NEO-FFI, SPS, ESSS, STAXI, BSI and SF-36. SLE patient’s clinical and laboratorial evaluation was performed by computerized indicators of activity (SLEDAI), of accumulated damage (SLICC/ACR Damage Index), length of disease and therapy. We observed a significant impact of stress in these patients, caused by a high perception of stress, life events and maintained difficulties. Other psychosocial factors of patients with SLE include: marked relational difficulties, characterized by the presence of high anxiety levels in attachment, accentuated alexithymia featured in 49% of these patients, as well as a high level of neuroticism and impaired quality of life. These patients also exhibited high levels of psychopathological symptoms, including depressive symptoms, anxiety symptoms and somatization. The prevalence of impaired psychosocial factors and psychopathological symptoms remained stable in the two moments, with no statistically significant differences for the two moments in these variables. In the first moment, we only observed a significant correlation between the activity index of the disease and life events. In the second moment, we observed that, beside this association, we also reported a correlation between alexithymia, the perception of stress, neuroticism and psychopathological symptoms with the activity index of the disease. Our study confirmed the theoretical and clinical model proposed, emphasizing the importance of psychosocial factors in patients with SLE, the influence it has on their disease progression and treatment, but also as the patient´s constitutional aspects. The importance of a comprehensive approach including other aspects beyond the patient´s physical domain (considering personality factors, relational aspects and how one regulates emotions and deal with stress) is central and essential in dealing with SLE patients. This study highlights the importance of careful monitoring for life events, personality factors and relational aspects in the relationship with SLE patients, potentiating a more effective intervention with patients and health professionals.
Descrição
Tese de doutoramento, Ciências e Tecnologias da Saúde (Desenvolvimento Urbano e Social), Universidade de Lisboa, Faculdade de Medicina, 2016
Palavras-chave
Fatores psicossociais Lúpus Stress Acontecimentos de vida Alexitimia Atividade doença Teses de doutoramento - 2016