Health state utility values in people living with HTLV-1 and in patients with HAM/TSP: The impact of a neglected disease on the quality of life.

BACKGROUND: HTLV-1 is a neglected sexually transmitted infection despite being the cause of disabling neurological disease HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP). There is no treatment for this infection and public health policies are essential to reduce its transmission. However, there are no data to support adequate cost-effective analysis in this field. The aim of this study was to obtain health state utility values for individuals with HAM/TSP and HTLV-1 asymptomatic carriers (AC). The impact of both states on quality of life (QoL) is described and compared to other diseases. METHODS: A cross-sectional observational study of 141 individuals infected with HTLV-1 (79 with HAM/TSP and 62 AC) from three Brazilian states (Rio de Janeiro, São Paulo and Alagoas) and from the United Kingdom. Participants completed a validated general health questionnaire (EQ-5D, Euroqol) from which country specific health state utility values are generated. Clinical and epidemiological data were collated. PRINCIPAL FINDINGS: Health state utility value for HAM/TSP was 0.2991. QoL for 130 reported clinical conditions ranges from 0.35 to 0.847. 12% reported their quality of life as worse as death. Low QoL was associated with severity rather than duration of disease with a moderate inverse correlation between QoL and Osame's Motor Disability Score (-0.4933) Patients who are wheelchair dependent had lowest QoL whilst those still walking unaided had the highest. AC also reported impaired QoL (0.7121) compared to general population. CONCLUSION: HTLV-1 and its associated neurological disease has a marked impact on QoL. This study provides robust data to support the development of cost-utility analysis of interventions for HTLV-1.

Comparative study of impulsiveness and risk behaviors among infected individuals with hepatitis C virus and human T-cell lymphotropic virus type 1.

INTRODUCTION AND OBJECTIVES: Hepatitis C virus (HCV) and human T-cell lymphotropic virus type 1 (HTLV-1) infections have chronic courses. HCV is primarily transmitted via the hematogenous route, whereas HTLV-1 is primarily transmitted sexually, although it can also be transmitted by blood. Individuals chronically infected with either HTLV-1 or HCV can differ in terms of behavioral characteristics and personality traits. This study compared the occurrence of risk behaviors and impulsivity aspects between HCV and HTLV-1 carriers. MATERIALS AND METHODS: Observational, comparative and cross-sectional study that involved a sample of outpatients who had HCV or HLTV-1, by way of a sociodemographic and behavioral questionnaire and the Barratt Impulsiveness Scale - BIS-11. 143 individuals with HCV and 113 individuals with HTLV-1 were evaluated. RESULTS: There was a difference with regards to gender among patients, with mostly males affected in the HCV group. Risk behaviors commonly mediated by impulsiveness were significantly more frequent in the HCV group. Similarly, overall impulsiveness and domain nonplanning were higher in the HCV group. Multivariate analysis showed that increased age, male gender, higher nonplanning scores and HCV infection were independent factors for the occurrence of risk behaviors. Both groups presented high rates of other sexually transmitted diseases and a low rate of condom use in sexual relations. CONCLUSIONS: This study confirms the higher rate of risk behaviors and the levels of impulsiveness commonly observed in patients with HCV, along with comparisons to patients with HTLV-1.

Quality of life, risk behaviors and depression among carriers of hepatitis C virus and human T-cell lymphotropic virus type 1: a comparative study

Abstract Human T-cell lymphotropic virus type 1 (HTLV-1) has low prevalence rates, but is endemic in some regions of the world. It is usually a chronic asymptomatic infection, but it can be associated with serious neurologic and urinary conditions. Hepatitis C virus (HCV) is broadly spread out worldwide. The majority of these infections have a chronic course that may progress to cirrhosis and hepatocellular carcinoma. Objectives: To compare sociodemographic and mental health (risk behaviors, depression, and suicide) aspects, and quality of life among patients with HCV or HTLV-1. Methods: Observational, comparative and cross-sectional study involving outpatients with HCV or HLTV-1 infection. Sociodemographic characteristics, risk behaviors and quality of life were assessed through the questionnaires Mini International Neuropsychiatric Interview - MINI Plus (depression and suicide) and Medical Outcomes Study 36-Item Short-Form Health Survey (quality of life). Univariate and multivariate statistical analyses (hierarchical logistic regression) were conducted. Results: 143 individuals with HCV and 113 individuals with HTLV-1 infection were included. Males were predominant in the HCV group (68.8%) and females in the HTLV-1 group (71.7%). The frequency of risk behaviors (sexual and drug use) was greater in those with HCV (p < 0.05). A past depressive episode was more common in the HTLV-1 group (p = 0.037). Quality of life was significantly worse in the physical functioning, vitality, mental health, and social functioning domains in those with HTLV-1 (p < 0.05). HTLV-1 infection remained independently associated with worse quality of life in multivariate analysis. Conclusions: Risk behaviors are frequent among those infected with HCV. Additionally, despite HTLV-1 being considered an infection with low morbidity, issues related to mental health (depressive episode) and decreased quality of life are relevant.

Memory impairment: an intermediate clinical syndrome symptom in HTLV-1-infected patients?

BACKGROUND: Although classical human T-cell lymphocyte virus type 1 (HTLV-1)-associated myelopathy/tropical spastic paraparesis syndrome is the most frequent HTLV-1-associated neurological disorder, some "minor" neurological disorders can be seen in "asymptomatic" carriers. These disorders, including cognitive alterations already described in clinical cases and studies, may constitute an intermediate syndrome (IMS) between the asymptomatic state and myelopathy. The aim of this study was to investigate the presence of cognitive deficits in patients with HTLV-1 virus, who usually are diagnosed as asymptomatic. METHODS: A total of 54 HTLV-1-infected patients were evaluated, 35 asymptomatic and 19 with minor neurological alterations (evaluated by a neurologist); 25 HTLV-1-seronegative individuals served as controls. The instruments used were: Beck's Depression Inventory, Lawton's Daily Life Activity Scale, and a complete neuropsychological battery. The application of these evaluation instruments was performed blindly, with the evaluator neuropsychologist not knowing the clinical condition of the patient. RESULTS: Most of the participants in this cohort, including seronegative controls, were female (n = 57, 72.21%), their mean age was 52.34 years (SD = 14.29) and their average schooling was 9.70 years (SD = 4.11). DISCUSSION: Participants classified with IMS had lower gross scores when compared with both the patients classified as asymptomatic and with the control group, and when tested for auditory episodic memory of immediate (p < 0.01), and late (p = 0.01), recall. CONCLUSION: Patients with IMS presented with memory impairment when compared with asymptomatic patients and seronegative individuals; this is one of the symptoms that aids in the classification of the syndrome.

Quality of life, risk behaviors and depression among carriers of hepatitis C virus and human T-cell lymphotropic virus type 1: a comparative study.

Human T-cell lymphotropic virus type 1 (HTLV-1) has low prevalence rates, but is endemic in some regions of the world. It is usually a chronic asymptomatic infection, but it can be associated with serious neurologic and urinary conditions. Hepatitis C virus (HCV) is broadly spread out worldwide. The majority of these infections have a chronic course that may progress to cirrhosis and hepatocellular carcinoma. OBJECTIVES: To compare sociodemographic and mental health (risk behaviors, depression, and suicide) aspects, and quality of life among patients with HCV or HTLV-1. METHODS: Observational, comparative and cross-sectional study involving outpatients with HCV or HLTV-1 infection. Sociodemographic characteristics, risk behaviors and quality of life were assessed through the questionnaires Mini International Neuropsychiatric Interview - MINI Plus (depression and suicide) and Medical Outcomes Study 36-Item Short-Form Health Survey (quality of life). Univariate and multivariate statistical analyses (hierarchical logistic regression) were conducted. RESULTS: 143 individuals with HCV and 113 individuals with HTLV-1 infection were included. Males were predominant in the HCV group (68.8%) and females in the HTLV-1 group (71.7%). The frequency of risk behaviors (sexual and drug use) was greater in those with HCV (p < 0.05). A past depressive episode was more common in the HTLV-1 group (p = 0.037). Quality of life was significantly worse in the physical functioning, vitality, mental health, and social functioning domains in those with HTLV-1 (p < 0.05). HTLV-1 infection remained independently associated with worse quality of life in multivariate analysis. CONCLUSIONS: Risk behaviors are frequent among those infected with HCV. Additionally, despite HTLV-1 being considered an infection with low morbidity, issues related to mental health (depressive episode) and decreased quality of life are relevant.

Memory impairment: an intermediate clinical syndrome symptom in HTLV-1-infected patients? / Comprometimento da memória: um sintoma de síndrome clínica intermediária em pacientes infectados pelo HTLV-1?

Background Although classical human T-cell lymphocyte virus type 1 (HTLV-1)-associated myelopathy/tropical spastic paraparesis syndrome is the most frequent HTLV-1-associated neurological disorder, some "minor" neurological disorders can be seen in "asymptomatic" carriers. These disorders, including cognitive alterations already described in clinical cases and studies, may constitute an intermediate syndrome (IMS) between the asymptomatic state and myelopathy. The aim of this study was to investigate the presence of cognitive deficits in patients with HTLV-1 virus, who usually are diagnosed as asymptomatic. Methods A total of 54 HTLV-1-infected patients were evaluated, 35 asymptomatic and 19 with minor neurological alterations (evaluated by a neurologist); 25 HTLV-1-seronegative individuals served as controls. The instruments used were: Beck's Depression Inventory, Lawton's Daily Life Activity Scale, and a complete neuropsychological battery. The application of these evaluation instruments was performed blindly, with the evaluator neuropsychologist not knowing the clinical condition of the patient. Results Most of the participants in this cohort, including seronegative controls, were female (n = 57, 72.21%), their mean age was 52.34 years (SD = 14.29) and their average schooling was 9.70 years (SD = 4.11). Discussion Participants classified with IMS had lower gross scores when compared with both the patients classified as asymptomatic and with the control group, and when tested for auditory episodic memory of immediate (p < 0.01), and late (p = 0.01), recall. Conclusion Patients with IMS presented with memory impairment when compared with asymptomatic patients and seronegative individuals; this is one of the symptoms that aids in the classification of the syndrome.

RESUMO Apesar da síndrome de HAM / TSP clássica ser a perturbação neurológica mais atribuída, alguns distúrbios neurológicos denominados "menores" são vistos em portadores "assintomáticos" de HTLV-1. Esses distúrbios, incluindo alterações cognitivas já observadas em descrições de casos clínicos e estudos, podendo constituir uma verdadeira síndrome clínica intermediária (SI) entre o estado assintomático e mielopatia. O objetivo deste estudo foi investigar a presença de déficits cognitivos em pacientes portadores do vírus HTLV-1 diagnosticados classicamente como assintomáticos. Métodos Foram avaliadas 54 pessoas, sendo 35 assintomáticos, 19 com alterações neurológicas menores (avaliados por um neurologista) e 25 HTLV-1 negativo. Os instrumentos utilizados foram: Inventário Beck de Depressão, Escala de Atividades de Vida Diária de Lawton e uma completa bateria neuropsicológica. A aplicação destes instrumentos de avaliação foi realizada de forma cega, ou seja, a avaliadora não sabia a condição clinica do paciente. Resultados A maioria dos participantes era do sexo feminino (n = 57, 72,21%), com idade média de 52.34 anos (DP = 14,29) e escolaridade média de 9.70 anos (DP = 4,11). Discussão Avaliando o desempenho cognitivo nos três grupos, foi possível observar que os participantes classificados com SI, apresentaram menores escores brutos, quando comparados, com os pacientes com classificação assintomática e grupo controle e, em relação à memória episódica auditiva de evocação imediata (p < 0,01) (p = 0,01) e tardia. Conclusão Diante dos resultados foi possível concluir que os pacientes com SI apresentam comprometimento de memória quando comparado com os outros grupos, sendo possível, ser este um dos sintomas para auxiliar na classificação da síndrome.

Depression and anxiety disorders among patients with human T-cell lymphotropic virus type-1: a cross-sectional study with a comparison group.

INTRODUCTION: Studies have linked human T-cell lymphotropic virus type-1 (HTLV-1) to psychiatric disease. METHODS: Patients with HTLV-1 were compared to patients seen by family doctors using a semi-structured questionnaire and the Hospital Anxiety and Depression Scale. RESULTS: Participants with (n=58) and without (n=340) HTLV were compared. Anxiety and depression were associated with greater age, being a woman, spastic paraparesis (depression: PR=4.50, 95% CI: 3.10-6.53; anxiety: PR=2.96, 95% CI: 2.08-4.21), and asymptomatic HTLV (depression: PR=4.34, 95% CI: 3.02-6.24; anxiety: PR=2.81, 95% CI: 2.06-3.85). CONCLUSIONS: Symptomatic and asymptomatic patients with HTLV-1 experienced more anxiety and depression than uninfected patients.

Depression and anxiety disorders among patients with human T-cell lymphotropic virus type-1: a cross-sectional study with a comparison group

Abstract INTRODUCTION: Studies have linked human T-cell lymphotropic virus type-1 (HTLV-1) to psychiatric disease. METHODS: Patients with HTLV-1 were compared to patients seen by family doctors using a semi-structured questionnaire and the Hospital Anxiety and Depression Scale. RESULTS: Participants with (n=58) and without (n=340) HTLV were compared. Anxiety and depression were associated with greater age, being a woman, spastic paraparesis (depression: PR=4.50, 95% CI: 3.10-6.53; anxiety: PR=2.96, 95% CI: 2.08-4.21), and asymptomatic HTLV (depression: PR=4.34, 95% CI: 3.02-6.24; anxiety: PR=2.81, 95% CI: 2.06-3.85). CONCLUSIONS: Symptomatic and asymptomatic patients with HTLV-1 experienced more anxiety and depression than uninfected patients.

Characterization of cognitive performance and evaluation of quality of life among patients with HTLV-1.

OBJECTIVE: To characterize cognitive alterations among patients with HTLV-1, ascertain what is associated with these alterations and evaluate these patients' quality of life. PATIENTS AND METHODS: This was a cross-sectional study. Patients infected by HTLV-1 who were seen at the Oswaldo Cruz University Hospital from March 2014 to June 2015 were included in the study. A semi-structured questionnaire and the Mini-Mental State Examination, Color Trails Test, Wechsler Adult Intelligence Scale (WAIS-III), Hospital Anxiety and Depression Scale and Medical Outcomes Study 36-Item Short-Form Health Survey (SF36) were used. "Low IQ" scores were defined for WAIS-III as under 80 points. Results Fifty-five patients were evaluated: 26% presented altered MMSE, 38%, altered Color Trails Test; 10.9% presented low total IQ; 12.7%, low executive IQ; and 10.9%, low verbal IQ. There was no association between low total IQ and any characteristics of the patient or of the HTLV infection. Paraparesis and anxiety disorders were significantly associated with worse quality of life. CONCLUSION: High frequency of cognitive impairment was found in patients with HTLV, thus suggesting that these alterations are an important clinical manifestation of this virus.

Cognitive impairment is frequent among symptomatic carriers of human T-cell lymphotropic virus type 1 (HTLV-1), regardless of their clinical status.

The main goal of this study was to investigate the presence of cognitive impairment in patients infected with HTLV-1 presenting or not TSP/HAM. METHODS: Cross-sectional study including 104 participants: 37 asymptomatic HTLV-1 carriers, 37 patients diagnosed with TSP/HAM and 30 HTLV-1 negative control patients. Within the HTLV-1 positive group, 53 were female and 21 were male, the average age was 46 (SD=13.5) and the average schooling time was 7.7years (SD=3.3).The sociodemographic variables (genre, age and education) were compared between the three groups. The assessment tools used were: Beck Depression Inventory, Lawton's Activities of Daily Life Scale and a complete neuropsychological battery. The application of these assessment tools was carried out in blind. Both HTLV-1 asymptomatic subjects and HAM/TSP patients showed a lower performance on neuropsychological tests and higher depression scores when compared to the control group. HTLV-1 patients performed poorly in several cognitive domains, but only fluid intelligence, estimated intellectual functioning, immediate and delayed recall of visual memory and information processing speed (in the specific case of patients with TSP/HAM) reached statistical significance when compared with controls. Depression was not associated with cognitive impairment. HTLV-1 carriers presented a higher frequency of cognitive impairment than normal controls.

Quality of life and pain multidimensional aspects in individuals with HTLV-1.

HTLV-1 creates a chronic health condition that involves moderate to severe pain with a negative impact on quality of life (QoL). There is no consensus on which attitudes to pain are more related to the worsening of QoL in HTLV-1 infected patients. The aim of this study was to investigate the correlation between QoL and multidimensional aspects of pain in patients with HTLV-1. A cross-sectional study was conducted in Salvador, Bahia, Brazil. The study included individuals diagnosed with HTLV-1. The Short Form 36 Questionnaire was used to analyze QoL, and the Brief Pain Inventory was used to assess multidimensional aspects of pain. The mean pain intensity was 4.88±3.06 on the visual pain scale, and the average impact on QoL corresponded to a loss of approximately 40%. Moderate to high correlations between pain intensity and all domains of QoL were observed and compared reaction attitudes for general activity, mood, ability to walk, ability to work, relationships, sleep, and ability to enjoy life (r>0.40; p<0.05). Moderate correlations were found between all domains of QoL, pain intensity, and reactive attitudes to pain. The greatest pain intensity impacts involved difficulty to walk and to work, and interpersonal relationships in the emotional aspect of QoL.

Psychiatric Disorders in HTLV-1-Infected Individuals with Bladder Symptoms.

BACKGROUND: Previous studies have reported high rates of depression and anxiety in HTLV-1 infected individuals with the neurological disease and in the asymptomatic phase. No study has investigated the rates in individuals that already show bladder symptoms without severe neurological changes; that is, during the oligosymptomatic phase. The present study investigated patients in this intermediate form on the spectrum of the infection. METHODOLOGY/PRINCIPAL FINDINGS: Participants answered a sociodemographic questionnaire, the Mini International Neuropsychiatric Interview Brazilian Version 5.0.0 (MINI PLUS) and the Hospital Anxiety and Depression Scale (HADS). Data analysis was performed in STATA statistical software (version 12.0). Depressive disorder was the most frequent comorbidity. Current depressive disorder was higher in the group of overactive bladder subjects (11.9%), and lifelong depression was more frequent in the HAM/TSP group (35%). The three groups had similar frequencies of anxiety disorders. Increased frequency and severity of anxiety and depression symptoms were observed in the overactive bladder group. CONCLUSION/SIGNIFICANCE: The results suggest that individuals with overactive bladders need a more thorough assessment from the mental health perspective. These patients remain an understudied group regarding psychiatric comorbidities.

Impotência e desamparo: reflexões acerca de pais com HAM/TSP no contexto do HTLV / Impotence and helplessness: reflections about parents with HAM / TSP in the HTLV context

O objetivo deste estudo foi discutir a influência da realização do exame sorológico em familiares de pacientes com HAM/TSP, assim como verificar estados de humor e qualidade de vida...

Suicide risk and alcohol and drug abuse in outpatients with HIV infection and Chagas disease.

OBJECTIVE: To evaluate psychiatric comorbidities in outpatients receiving care for HIV and Chagas disease at Instituto de Pesquisa Clínica Evandro Chagas (IPEC), Fundação Oswaldo Cruz (Fiocruz), Rio de Janeiro, Brazil. METHODS: Cross-sectional study with a consecutive sample of 125 patients referred to an outpatient psychiatric clinic from February to December 2010. The Mini International Neuropsychiatric Interview (MINI) was used. Factors associated with more frequent mental disorders were estimated by odds ratios (OR) with 95% confidence intervals (95%CI) by multiple logistic regression. RESULTS: Seventy-six (60.8%) patients with HIV, 40 (32%) patients with Chagas disease, and nine (7.2%) patients with human T-lymphotropic virus were interviewed. The majority were women (64%), with up to 8 years of formal education (56%), and unemployed (81.6%). The median age was 49 years. Suicide risk (n=71) (56%), agoraphobia (n=65) (52%), major depressive episode (n=56) (44.8%), and alcohol/drug abuse (n=43) (34.4%) predominated, the latter being directly associated with lower family income (OR = 2.64; 95%CI 1.03-6.75) and HIV infection (OR = 5.24; 95%CI 1.56-17.61). Suicide risk was associated with non-white skin color (OR = 2.21; 95%CI 1.03-4.75), unemployment (OR = 2.72; 95%CI 1.01-7.34), and diagnosis of major depression (OR = 3.34; 95%CI 1.54-7.44). CONCLUSION: Measures targeting adverse socioeconomic conditions and psychiatric and psychological monitoring and care should be encouraged in this population, considering the association with abuse of alcohol/other psychoactive drugs and suicide risk.

Suicide risk and alcohol and drug abuse in outpatients with HIV infection and Chagas disease

Objective: To evaluate psychiatric comorbidities in outpatients receiving care for HIV and Chagas disease at Instituto de Pesquisa Clínica Evandro Chagas (IPEC), Fundação Oswaldo Cruz (Fiocruz), Rio de Janeiro, Brazil. Methods: Cross-sectional study with a consecutive sample of 125 patients referred to an outpatient psychiatric clinic from February to December 2010. The Mini International Neuropsychiatric Interview (MINI) was used. Factors associated with more frequent mental disorders were estimated by odds ratios (OR) with 95% confidence intervals (95%CI) by multiple logistic regression. Results: Seventy-six (60.8%) patients with HIV, 40 (32%) patients with Chagas disease, and nine (7.2%) patients with human T-lymphotropic virus were interviewed. The majority were women (64%), with up to 8 years of formal education (56%), and unemployed (81.6%). The median age was 49 years. Suicide risk (n=71) (56%), agoraphobia (n=65) (52%), major depressive episode (n=56) (44.8%), and alcohol/drug abuse (n=43) (34.4%) predominated, the latter being directly associated with lower family income (OR = 2.64; 95%CI 1.03-6.75) and HIV infection (OR = 5.24; 95%CI 1.56-17.61). Suicide risk was associated with non-white skin color (OR = 2.21; 95%CI 1.03-4.75), unemployment (OR = 2.72; 95%CI 1.01-7.34), and diagnosis of major depression (OR = 3.34; 95%CI 1.54-7.44). Conclusion: Measures targeting adverse socioeconomic conditions and psychiatric and psychological monitoring and care should be encouraged in this population, considering the association with abuse of alcohol/other psychoactive drugs and suicide risk. .

Major depression and generalized anxiety disorder among human T-lymphotropic virus types I- and II-infected former blood donors.

BACKGROUND: Other studies have reported high rates of depression and anxiety among human T-lymphotropic virus Type I (HTLV-I)-infected subjects and have even suggested that HTLV-I causes psychiatric disease. STUDY DESIGN AND METHODS: We interviewed HTLV-I, HTLV-II, and demographically similar HTLV-seronegative blood donors with the Mini-International Neuropsychiatric Interview. Prevalences of major depression and generalized anxiety disorder in each group were calculated and compared to published US population data. Adjusted odds ratios (aOR) and 95% confidence intervals (CIs) controlling for educational achievement, alcohol intake, and self-reported health status were calculated with multivariate logistic regression. RESULTS: Major depression was diagnosed in five (5.4%) of 93 HTLV-I-positive subjects (aOR, 2.19; 95% CI, 0.63-7.55) and 17 (6.6%) of 256 HTLV-II-positive subjects (aOR, 1.61; 95% CI, 0.66-3.927), compared to 12 (2.1%) of 585 HTLV-seronegative blood donors. The prevalence of major depression among infected subjects was comparable to the 6.7% prevalence in the US general population. Generalized anxiety disorder was diagnosed in five (5.4%) HTLV-I-positive subjects (OR, 2.32; 95% CI, 0.74-7.26) and 12 (4.7%) HTLV-II-positive subjects (OR, 1.65; 95% CI, 0.68-4.01), compared to 15 (2.6%) seronegative subjects and 3.1% in the US general population. CONCLUSION: Major depression and generalized anxiety disorder were not significantly more prevalent among HTLV-I- and HTLV-II-infected former blood donors after controlling for health status and other confounding variables. HTLV-seronegative blood donors had lower prevalences of these conditions than the US population, probably due to a "healthy blood donor effect."

Living invisible: HTLV-1-infected persons and the lack of care in public health.

INTRODUCTION: Human T-cell lymphotropic virus type 1 (HTLV-1) infection is intractable and endemic in many countries. Although a few individuals have severe symptoms, most patients remain asymptomatic throughout their lives and their infections may be unknown to many health professionals. HTLV-1 can be considered a neglected public health problem and there are not many studies specifically on patients' needs and emotional experiences. OBJECTIVE: To better understand how women and men living with HTLV-1 experience the disease and what issues exist in their healthcare processes. METHODS: A qualitative study using participant observation and life story interview methods was conducted with 13 symptomatic and asymptomatic patients, at the outpatient clinic of the Emilio Ribas Infectious Diseases Institute, in Sao Paulo, Brazil. RESULTS AND DISCUSSION: The interviewees stated that HTLV-1 is a largely unknown infection to society and health professionals. Counseling is rare, but when it occurs, focuses on the low probability of developing HTLV-1 related diseases without adequately addressing the risk of infection transmission or reproductive decisions. The diagnosis of HTLV-1 can remain a stigmatized secret as patients deny their situations. As a consequence, the disease remains invisible and there are potentially negative implications for patient self-care and the identification of infected relatives. This perception seems to be shared by some health professionals who do not appear to understand the importance of preventing new infections. CONCLUSIONS: Patients and medical staff referred that the main focus was the illness risk, but not the identification of infected relatives to prevent new infections. This biomedical model of care makes prevention difficult, contributes to the lack of care in public health for HTLV-1, and further perpetuates the infection among populations. Thus, HTLV-1 patients experience an "invisibility" of their complex demands and feel that their rights as citizens are ignored.

Primary brain T-cell lymphoma in an HTLV-1 serologically positive male.

Primary central nervous system lymphoma (PCNSL) is a subgroup of extranodal non-Hodgkin lymphoma usually due to B-cells. The incidence of T-cell PCNSL is 1-4% in Western countries. Human T-lymphotropic virus (HTLV-1) causes tropical spastic paraparesis/myelopathy and adult T-cell leukemia/lymphoma. We describe the extremely rare occurrence of T-cell PCNSL in a 29 year old HTLV-1 carrier. Additional unusual features of the case included the patient's young age and normal cerebrospinal fluid cytological findings, without leptomeningeal spread. Given the long latency between HTLV-1 infection and disease manifestation, more such cases may be diagnosed in the future. We recommend that every patient with T-cell PCNSL be screened for HTLV-1.

Impact of depression on quality of life in people living with human T cell lymphotropic virus type 1 (HTLV-1) in Salvador, Brazil.

PURPOSE: A previous study found the prevalence of depression in HTLV-1-infected patients to be approximately 30%, but few studies have attempted to correlate depression with quality of life (QOL) in these patients. The present study investigates the association between depression and QOL in people living with HTLV-1. METHODS: A clinical-epidemiological questionnaire, the Mini International Neuropsychiatric Interview and the WHOQOL-Bref were applied to 88 HTLV-1-infected patients (32 with TSP/HAM) at the HTLV Center of the Bahiana School of Medicine and Public Health, Salvador, Brazil. RESULTS: The prevalence of depression among people living with HTLV-1 was 34.1%. Depression was significantly associated with a poor QOL in the physical, psychological, social relationship and environment domains, when controlling for other variables, such as gender, age, time of knowledge of serological diagnosis and presence of tropical spastic paraparesis/HTLV-1associated myelopathy (TSP/HAM). Moreover, patients with TSP/HAM experienced a reduction in their QOL in the physical, psychological and environment domains. CONCLUSION: Our results showed that depression negatively affects the quality of life of people living with HTLV-1, regardless of the presence of TSP/HAM. Since it is possible to improve a patient's QOL by treating depression, psychological evaluations are strongly recommended as a measure to integrate the treatment protocols of HTLV-1 intervention programs.

Characteristics of Chronic Pain and Its Impact on Quality of Life of Patients With HTLV-1-associated Myelopathy/Tropical Spastic Paraparesis (HAM/TSP).

OBJECTIVES: we describe the prevalence of chronic pain and their characteristics in 43 consecutive patients presenting with human T-lymphotropic virus Type I (HTLV-1) associated myelopathy (HAM) /tropical spastic paraparesis in Salvador, Brazil. METHODS: in this cross-sectional study, we included 43 consecutive patients with HAM/TSP from Sarah Salvador Unit of the Rehabilitation, in Bahia, Brazil. They were evaluated from September 2007 to July 2008. We used the following scales: Functional disability scales (EDSS, OSAME e HOFFER); visual analogue scale; Hospital Anxiety and Depression Scale; McGill Pain Questionnaire; DN4 Questionnaire and SF-36 Quality-of-Life Questionnaire. RESULTS: chronic pain was highly prevalent (38 patients---88.4%) in this population. We detected an inverse correlation between duration of the disease and the likelihood of patients to present with chronic pain (P<0.05). Individuals with greater neurologic deficits had much more neuropathic, whereas those with lower motor deficit had mainly the characteristics of nociceptive pain (P<0.05). A positive correlation was observed between the score of the dominant pain or the additional pain, and the number of pain descriptors (P<0.05 for both evaluations). The patients with chronic pain had worst Quality-of-Life scores (P<0.05). CONCLUSION: chronic pain was significantly associated with a higher likelihood of signs/symptoms of anxiety and depression, reflecting a negative impact of pain on patients´ quality of life.