Impacto das medidas de restrição social da pandemia da COVID-19 na participação social de pessoas com HTLV-1: estudo transversal / Impact of pandemic social restriction measures of COVID-19 on the social participation of people with HTLV-1: a transversal study

| INTRODUÇÃO: O vírus linfotrópico de células T humana tipo 1 (HTLV-1) é classificado como retrovírus e pode estar diretamente associado às doenças neurológicas. Por ser uma doença negligenciada pelas autoridades sanitárias e governamentais num panorama mundial, ainda existe uma carência de evidências científicas que investigam o impacto do HTLV-1 no âmbito da participação social dessa população. OBJETIVO: Analisar o impacto da pandemia da COVID-19 na participação social de indivíduos com HTLV-1. MATERIAL E MÉTODOS: Trata-se de um estudo observacional do tipo transversal realizado com indivíduos com HTLV-1 vinculados à Associação HTLVida. A coleta de dados foi realizada através de entrevistas via videoconferência; a primeira entrevista teve como objetivo explorar as características clínicas e sociodemográficas dos participantes, já a segunda investigou a participação social dos indivíduos comparando dois períodos (antes e durante a pandemia de COVID-19), através da aplicação do Questionário de Integração na Comunidade (QIC). RESULTADOS: Foram entrevistados 11 indivíduos, com predominância do sexo feminino (72,7%), com mediana de idade de 57 (52- 66) anos. No que tange os resultados referentes à participação social avaliada pelo QIC, observou-se a manutenção do escore do domínio de integração no ambiente doméstico, uma diferença de 3.00 pontos no domínio de integração no ambiente social, uma diferença de 2.00 pontos no domínio de integração no ambiente do trabalho e escola, além de uma diferença de 6.00 pontos no escore total do QIC. CONCLUSÃO: Identificou-se uma diminuição da participação social de indivíduos com HTLV-1 durante a pandemia da COVID-19, quando comparado ao período prévio de início da pandemia.

INTRODUCTION: Human T-cell Lymphotropic Virus type 1 (HTLV-1) is classified as a retrovirus and may be directly associated with neurological diseases. As it is a disease neglected by health and governmental authorities in a world panorama, there is still a lack of scientific evidence that investigates the impact of HTLV-1 in the scope of the social participation of this population. OBJECTIVE: To analyze the impact of the COVID-19 pandemic on the social participation of individuals with HTLV-1. MATERIAL AND METHODS: This is a transversal observational study carried out with individuals with HTLV-1, linked to the HTLVida Association. The data collection was carried out through interviews in a videoconference. The first interview aimed to explore the clinical and sociodemographic characteristics of the participants. In contrast, the second one investigated the social participation of individuals comparing two periods (before and during the COVID-19 pandemic) through the application of the Community Integration Questionnaire (CIQ). RESULTS: Eleven individuals were interviewed, predominantly female (72.7%), with a median age of 57 (52-66). About the results regarding social participation evaluated by the CIQ, was observed maintenance of the score in the domain of Integration in the home environment, a difference of 3.00 points in the domain of Integration in the social environment, a difference of 2.00 points in the domain of Integration in the work and school environment, and a difference of 6.00 points in the total CIQ score. CONCLUSION: A decrease in the social participation of individuals with HTLV-1 during the COVID-19 pandemic was compared to the period before the start of the pandemic.

Prevalence of bowel symptoms in patients infected with human T-lymphotropic type 1 virus

Abstract INTRODUCTION: Bowel dysfunction is frequent in patients with spinal cord diseases, but little is known about the prevalence of bowel symptoms in human T-lymphotropic virus-(HTLV-1) infected individuals. The purpose of this study is to determine the frequency of bowel symptoms in HTLV-1 infected individuals and their correlation with the degree of neurologic disease. METHODS: This is a cross-sectional study comparing the frequency of bowel symptoms in HTLV-1-infected individuals* and seronegative donors (controls). Patients answered a questionnaire, the Rome III Criteria was applied, and stool consistency was evaluated by the Bristol Stool Form Scale. The individuals were classified as HTLV-1 carriers, probable HTLV-1 myelopathy and definitive HTLV-1 associated myelopathy or tropical spastic paraparesis (definitive HAM / TSP)**. RESULTS: We studied 72 HTLV-1 infected individuals and 72 controls with equal age and gender distribution. Constipation was the most frequent complaint, occurring in 38 % of HTLV-1 individuals and in 15 % of the controls. In comparison to the seronegative controls, the probability of constipation occurrence was approximately 18 times higher in definitive HAM / TSP patients. Straining, lumpy or hard stools, sensation of anorectal obstruction/blockage, fewer than 3 defecations per week, flatulence, soiling, evacuation pain, and bleeding were also more frequent in the HTLV-1 patients than in the controls. Moreover, bowel symptoms were more frequent in patients with definitive or probable HAM / TSP than in carriers. CONCLUSIONS: Bowel symptoms were more frequent in HTLV-1-infected patients than in seronegative controls and the frequency of bowel symptoms correlated with the severity of neurologic disease.

Association between urinary symptoms and quality of life in HTLV-1 infected subjects without myelopathy

Objective To investigate the relationship between urinary symptoms and quality of life of patients infected with HTLV-1. Materials and Methods This is a cross-sectional study that enrolled individuals with HTLV-1 positive serology from February 2010 to March 2011. Participants were HTLV-1 infected subjects followed in the HTLV-1 clinic of the University Hospital in Salvador, Bahia, Brazil. Patients with HTLV-1 associated myelopathy / tropical spastic paraparesis (HAM/TSP), who had evidence of other neurological diseases, diabetes mellitus or were pregnant were excluded from the study. The questionnaire SF-36 was used to evaluate quality of life and the questionnaire OAB-V8 was used to evaluate urinary symptoms. Results From the 118 individuals evaluated, 50 (42.4%) complained of urinary symptoms and 68 (57.6%) did not. Most participants were females. There was no difference between the groups regarding demographic variables. The group with symptoms showed significantly lower scores in all domains of the SF-36 questionnaire. The domains with greatest differences were vitality and general health state. Conclusions Urinary symptoms negatively influence the quality of life of individuals infected with HTLV-1. .

Difficulties in HAM/TSP diagnosis / Dificuldades no diagnóstico da HAM/TSP

The World Health Organization recommends the use of Osame's criterion (1990) for the diagnosis of HTLV-I-associated myelopathy (HAM/TSP). In 2006, a group of neurologists developed a Brazilian criterion that can diagnose HAM/TSP from its onset. OBJECTIVE: It was to test the agreement between both criteria. METHODS: The study included evaluation of clinical and laboratory findings of 35 patients. The ELISA, Western blot and/or polymerase chain reaction was used to search for anti-HTLV-I antibodies. The analysis of agreement was based on the calculation of Kappa. RESULTS: Concordance of 100% (Kappa=1) occurred in cases of "defined" HAM/TSP, but not in patients with "probable" diagnosis. CONCLUSION: The Brazilian criteria was as effective as Osame's criteria for the diagnosis of "defined" HAM/TSP. However, both require more specific biological markers in cerebrospinal fluid for the laboratory diagnosis of probable cases.

A Organização Mundial da Saúde recomenda o uso do critério de Osame (1990) para o diagnóstico da mielopatia associada ao vírus HTLV-I (HAM/TSP). Em 2006, um grupo de neurologistas elaborou um critério brasileiro capaz de diagnosticar HAM/TSP desde suas manifestações iniciais. OBJETIVO: Foi testar a concordância entre ambos os critérios. MÉTODOS: O estudo incluiu a avaliação dos achados clínicos e laboratoriais de 35 pacientes. Os métodos de ELISA, Western blot e/ou reação em cadeia da polimerase foram utilizados para pesquisa de anticorpos anti-HTLV-I. A análise da concordância baseou-se no cálculo do índice Kappa. RESULTADOS: Concordância de 100% (índice Kappa=1) ocorreu nos casos de HAM/TSP "definida", mas não nos pacientes com o diagnóstico "provável". CONCLUSÃO: O critério brasileiro foi tão eficaz quanto o critério de Osame para o diagnóstico de HAM/TSP "definido". No entanto, ambos necessitam de marcadores biológicos mais específicos no líquido cefalorraquidiano para o diagnóstico laboratorial dos casos prováveis.

Prevalence of anxiety, depression and quality of life in HTLV-1 infected patients

The HAM/TSP caused by HTLV-1 infection usually affects patients to disabling states, and sometimes can lead them to paraplegia presenting symptoms of depression and anxiety, impacting on quality of life. Objective: The purpose of this study was to evaluate the frequency of depression and anxiety and its impact on quality of life in HTLV-1-infected TSP/HAM patients. Material and Methods: This was a cross-sectional study including 67 asymptomatic (control group) and 63 with TSP/HAM subjects. The instruments used were a demographic questionnaire, scales for anxiety and depression diagnosis (BDI and BAI), questionnaire for the assessment of Quality of Life of the World Health Organization (WHOQOL-Brief) and neurological scale to measure the disability level (Osame's Disability Status Scale). All patients had HTLV-I diagnosis by serological and molecular approaches, monitored at Instituto de Infectologia Emílio Ribas from May 2008 to July 2009. Data were analyzed statistically by frequencies, the Mann-Whitney test and the Spearman correlation test. Data among groups were analyzed and correlated with functional and severity aspects. Results: The results showed that patients with HAM/TSP compared to asymptomatic carriers had higher rates of depression (p < 0.001) and anxiety (p < 0.001), and impairment on quality of life in the areas of: dissatisfaction with health (p < 0.001), physical (p < 0.001) and the environment (p = 0.003). The main factors that correlated with levels of depression and anxiety and the domains of the WHOQOL-brief were: education, family income and social class. Conclusion: A well conducted evaluation and counseling may help in treatment, for a better quality of life of these patients.

Impacto da mielopatia associada ao HTLV/paraparesia espástica tropical (TSP/HAM) nas atividades de vida diária (AVD) em pacientes infectados pelo HTLV-1 / Impact of HTLV-associated myelopathy/T tropical spastic paraparesis (HAM/TSP) on activities of daily living (ADL) in HTLV-1 infected patients

Objetivo: Descrever o desempenho nas atividades de vida diária (AVD) em pacientes infectados pelo HTLV-1 com TSP/HAM e medir o impacto da doença sobre a qualidade de vida dos pacientes. Método: Trata-se de um estudo descritivo, de corte transversal. Um total de setenta e três pacientes com TSP/HAM acompanhados no Centro de HTLV da Escola Baiana de Medicina e Saúde Pública, Salvador, Bahia, Brasil foram selecionados. O índice de independência funcional foi calculada usando o Health Assessment Questionnaire (HAQ). A qualidade de vida foi avaliada incluindo a capacidade funcional, dor e aspecto físico, utilizando do Short-Form Health Survey (SF-36). Resultados: Um total de setenta e três pacientes com TSP/HAM foram avaliados: a idade média foi de 48,9 ± 11,4 anos, e 57 (78,1%) eram mulheres. A duração da doença TSP/HAM foi de 10 a 37 anos em50,7% dos pacientes. Trinta e seis pacientes (49,3%) necessitavam de ajuda de suportes para andar. As pontuações mais baixas no desempenho das AVD foram observadas entre as mulheres e se referiam à locomoção e à mobilidade / (98,2%), ao vestuário (73,7%) e ao auto cuidado (57,9%). O escore de qualidade de vida para o aspecto físico foi 24,2 e o da capacidade funcional foi 27,1. A média de dor foi 41,7. Conclusão: A TSP/HAM afeta negativamente a qualidade de vida e o desempenho nas AVD dos pacientes. Dispositivos de tecnologia assistiva devem ser usados para melhorar a capacidade funcional e a qualidade de vida desses pacientes.

Aim: To describe the performance of activities of daily living (ADL) ofHTLV-1 infected patients with HAM/TSP and to measure the impact of the disease on the patients' quality of life. Methods: This study is a descriptive,cross-sectional study. A total of seventy-three HAM/TSP patients were enrolled at the HTLV Center of the Bahia School of Medicine and Public Health, Salvador, Bahia, Brazil. The index of functional independence was calculated using the Health Assessment Questionnaire HAQ. The quality of life, including functional capacity, pain, and physical appearance was assessed using the Short-Form Health Survey (SF-36). Results: A total of seventy-three HAM/TSP patients were enrolled with a mean age of 48.9 ± 11.4 years, 57 of whom were (78.1%) women. The duration of HAM/TSP disease was 10 to 37 years (in 50.7% of the patients). Thirty-six patients (49.3%) had a need for walking supports. The lowest ADL performance scores were observed among women and referred to mobility/locomotion (98.2%), dressing (73.7%), and self-care (57.9%) aspects. The quality of life score for the physical aspect was 24.2, and the functional capacity was 27.1. The average for pain was 41.7. Conclusion: HAM/TSP has a negative impact the on the ADL performance of the patients and their quality of life. Assistive technology devices should be used to improve functional capacity and quality of life for these patients.

Piomiosite tropical em paciente com lúpus eritematoso sistêmico e infecção por HTLV 1/2 / Tropical pyomyositis in a patient with systemic lupus erythematosus and HTLV 1/2 infection

A piomiosite tropical (PT) é uma doença infecciosa da musculatura esquelética, de etiologia bacteriana, incomum, e muitas vezes associada a situações de imunodeficiência. O envolvimento de musculatura pélvica profunda, como o músculo ilíaco, é uma condição ainda mais incomum. A associação de lúpus eritematoso sistêmico (LES) e PT é pouco relatada na literatura. Como o LES é uma situação de imunodepressão tanto pela doença em si como pelas medicações utilizadas no seu tratamento, esses pacientes tornam-se grupo de risco para o desenvolvimento de infecções, como PT. A infecção pelo HTLV está cada vez sendo mais identificada e associada a patologias nas quais autoimunidade está implicada, como é o caso do LES. Os autores descrevem um caso de PT de localização no músculo ilíaco em paciente portadora de LES, insuficiência renal crônica, em hemodiálise, além de portadora do vírus HTLV 1/2, internada no Hospital Heliópolis, em São Paulo, Brasil.

Tropical pyomyositis (TP) is an unusual infectious disease of skeletal muscles, caused by bacteria, and often associated with immunodeficiency conditions. The involvement of deep pelvic muscles, such as the iliac muscle, is even rarer. The association of systemic lupus erythematosus (SLE) and PT is seldom reported in the literature. Because SLE involves a state of immunosuppression resulting from both the disease itself and its medicamentous treatment, SLE patients are at higher risk for developing infections, such as PT. Infection by HTLV 1/2 is increasingly identified and associated with autoimmune diseases, such as SLE. This is a case report of PT in the pelvic muscles of a female patient with SLE, chronic kidney failure, on hemodialysis, and HTLV1/2 infection, admitted to the Hospital Heliópolis, in the city of São Paulo, Brazil.

Geographic distribution of human T-lymphotropic virus types 1 and 2 among mothers of newborns tested during neonatal screening, Minas Gerais, Brazil / Distribución geográfica del virus linfotrópico de células T humanas tipos 1 y 2 en madres de recién nacidos estudiados en el tamizaje neonatal en Minas Gerais, Brasil

OBJECTIVE: To evaluate the geographic distribution of human T-lymphotropic virus types 1 and 2 (HTLV-1/2) in the State of Minas Gerais, Brazil, in puerperal women whose newborns were tested for HTLV-1/2 during neonatal screening, and to overlap seropositivity with social and economic status determinants. METHODS: During September-November 2007, the dry-blood samples taken from newborns on filter paper for routine screening were also tested for maternal IgG anti-HTLV-1/2 antibodies. For reactive samples, the mothers of the newborns had blood drawn to test for these viruses. RESULTS: The study analyzed 55 293 specimens taken from newborns. Of these, 52 (9.4 per 10 000) were reactive and 42 mothers (7.6 per 10 000) were confirmed with HTLV-1/2 infection. HTLV-1/2 geographic distribution was heterogeneous, with a tendency to be higher in the North and North-East parts of Minas Gerais. The highest rates of seropositivity were observed in Vale do Mucuri (55.9 per 10 000) and in Jequitinhonha (16.0 per 10 000), overlapping with the State's worst social and economic indicators. CONCLUSIONS: To our knowledge this was the first time that neonatal screening for HTLV-1/2 was performed in Brazil. This model could be used in other areas with high HTLV-1/2 prevalence rates. The detection of carrier mothers can enable intervention measures, such as providing infant formula to newborns, to be implemented expeditiously to reduce vertical transmission.

OBJETIVOS: Evaluar la distribución geográfica del virus linfotrópico de células T humanas tipos 1 y 2 (HTLV-1/2) en el estado de Minas Gerais (Brasil), en mujeres puérperas en cuyos recién nacidos se analizó la presencia del HTLV-1/2 durante las pruebas neonatales de detección sistemática, y superponer la seropositividad con determinantes del estado socioeconómico. MÉTODOS: Entre septiembre y noviembre de 2007, en las muestras de sangre seca extraída a los recién nacidos en papel de filtro para un tamizaje sistemático, se analizaron también los anticuerpos maternos de tipo IgG anti-HTLV-1/2. En el caso de las muestras reactivas, se extrajo la sangre de las madres de los recién nacidos para realizar pruebas de detección de estos virus. RESULTADOS: En el estudio se analizaron 55 293 muestras extraídas de los recién nacidos. De estas, 52 (9,4 por 10 000) fueron reactivas y en 42 madres (7,6 por 10 000) se confirmó la infección por el HTLV-1/2. La distribución geográfica del HTLV-1/2 fue heterogénea, con una tendencia a ser mayor en el norte y el noreste de Minas Gerais. Las tasas más elevadas de seropositividad se observaron en Vale do Mucuri (55,9 por 10 000) y en Jequitinhonha (16,0 por 10 000), superponiéndose con los peores indicadores socioeconómicos del estado. CONCLUSIONES: Esta fue la primera vez que se realizó un tamizaje neonatal para el HTLV-1/2 en Brasil. Este modelo podría usarse en otras regiones con tasas de prevalencia altas del HTLV-1/2. La detección de las madres portadoras puede permitir la aplicación rápida de medidas de intervención, como por ejemplo, el suministro de leche maternizada a los recién nacidos, a fin de reducir la transmisión vertical.