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.

Effectiveness of virtual reality games for falls, postural oscillations, pain and quality of life of individual HAM/TSP: a randomized, controlled, clinical trial.

People with HTLV-1 associated myelopathy or tropical spastic paraparesis (HAM/TSP) have sensorimotor losses and postural instability, resulting in frequent falls. These findings stimulate the use of exercise protocols associated with postural control. This study investigated the effectiveness of a balance training exercise protocol through a virtual game. This is a randomized crossover clinical trial performed in subjects with imbalance disorders (HAM/TSP). To evaluate postural oscillations by baropodometry (total area, anterior, posterior and lateral projection), the Footwork® system was used and by cinemetry (angle of the body, hip and ankle alignment in the lateral view), the CVMob system. In addition, the Brief Pain Inventory and the WHOQoL Bref were used to measure pain intensity and quality of life. Comparison tests of the averages (intra and inter groups) and correlations were applied considering an alpha of 5% and power of 80%. The study was approved by the Ethics Committee of the Catholic University of Salvador and registered in the Clinical Trials database (NCT02877030). The final sample consisted of 26, predominantly female subjects. An increase in the postural oscillations of the control subjects (p < 0.05), a reduction in the occurrence of falls (p = 0.039) and an improvement in the quality of life of the control-test group (p < 0.05) were observed. Virtual game training did not improve the static balance, promoting an increase in postural oscillations. Immediately after the application of the protocol, there was a reduction in fall occurrence and improvement in the quality of life.

Pain and Quality of Life in Human T-cell Lymphotropic Virus Type 1-Associated Myelopathy or Tropical Spastic Paraparesis After Home-Based Exercise Protocol: A Randomized Clinical Trial.

INTRODUCTION: Human T-cell lymphotropic virus type 1-associated myelopathy or tropical spastic paraparesis (HAM/TSP) causes, among other abnormalities, chronic pain that may impair quality of life (QOL). Home protocols can help those who have difficulty attending rehabilitation centers. This study aimed to evaluate the impact of a home-based exercise protocol on pain and QOL in people with HAM/TSP. METHODS: A randomized clinical trial of people with HAM/TSP (World Health Organization criteria) classified as probable or definite. The supervised group (SG) underwent training for 12 weeks and continued the protocol at home for another 12 weeks; the unsupervised group (UG) performed the same protocol at home without physical therapist supervision for 24 weeks; and the control group (CG) maintained the usual care. QOL was assessed by the Short Form-36 health survey and the pain condition by the Brief Pain Inventory (BPI). The Chi-square, analysis of variance, Kruskal-Wallis, and Friedman tests (5% alpha) were used for the analyses. The intention-to-treat method was adopted in case of follow-up losses. Record number RBR-849jyv/UTN: U1111-1176-2858. RESULTS: Of 56 participants, 49 completed the protocol. Mean pain was moderately reduced (>30%) in the UG and CG and mildly reduced (20%) in the SG. Loss in the vitality score of QOL in the CG was noted. CONCLUSIONS: The protocol generated mild and moderate pain relief and reduced losses in the functional QOL in the treatment groups.

Pain and quality of life in human t-cell lymphotropic virus type 1-associated myelopathy or tropical spastic paraparesis after home-based exercise protocol: a randomized clinical trial

Abstract INTRODUCTION: Human T-cell lymphotropic virus type 1-associated myelopathy or tropical spastic paraparesis (HAM/TSP) causes, among other abnormalities, chronic pain that may impair quality of life (QOL). Home protocols can help those who have difficulty attending rehabilitation centers. This study aimed to evaluate the impact of a home-based exercise protocol on pain and QOL in people with HAM/TSP. METHODS: A randomized clinical trial of people with HAM/TSP (World Health Organization criteria) classified as probable or definite. The supervised group (SG) underwent training for 12 weeks and continued the protocol at home for another 12 weeks; the unsupervised group (UG) performed the same protocol at home without physical therapist supervision for 24 weeks; and the control group (CG) maintained the usual care. QOL was assessed by the Short Form-36 health survey and the pain condition by the Brief Pain Inventory (BPI). The Chi-square, analysis of variance, Kruskal-Wallis, and Friedman tests (5% alpha) were used for the analyses. The intention-to-treat method was adopted in case of follow-up losses. Record number RBR-849jyv/UTN: U1111-1176-2858. RESULTS: Of 56 participants, 49 completed the protocol. Mean pain was moderately reduced (>30%) in the UG and CG and mildly reduced (20%) in the SG. Loss in the vitality score of QOL in the CG was noted. CONCLUSIONS: The protocol generated mild and moderate pain relief and reduced losses in the functional QOL in the treatment groups.

The impact of urinary incontinence on the quality of life and on the sexuality of patients with HAM/TSP.

This study evaluated the impact of urinary incontinence (UI) on sexuality, body image, mood, and quality of life of patients with myyelopathy associated with HTLV-1/tropical spastic paraparesis (HAM/TSP). The sample consisted of 31 HAM/TSP outpatients, of both sexes, followed-up at the Emílio Ribas Infectology Institute. The following instruments were used: sociodemographic questionnaire, Hospital Anxiety and Depression Scale (HAD), Body Image Assessment Scale, Sexual Quotient Female (QS-F) and Male (QS-M) Versions, King's Health Questionnaire (KHQ), and Revised OSAME Motor Disability Score. Data analysis was performed using descriptive statistics and the Mann-Whitney U-test was used for group comparison. The presence of UI was reported by 13 (41.9%) patients. Based on the quality of life questionnaire, patients with UI had a significant impact in the following domains: incontinence impact, daily life activities limitation, physical and social limitations, social relations, emotions, sleep and disposition, and severity measurements. Most participants had no anxiety (21; 67.7%) or depression symptoms (18; 58.1%). Regarding the sexual coefficient, 13 (41.9%) participants had sexual dissatisfaction. CONCLUSION: UI is common in HTLV-1 patients and may cause serious impairment in quality of life, with social, psychological and hygienic consequences. Nonetheless, there are few studies on this subject and their impact on mood and sexuality.

HAM/TSP and major depression: the role of age.

OBJECTIVE: To investigate the role of demographic variables in the relationship between the presence of HAM/TSP and current major depression. METHODS: It is a cross-sectional study of 108 HTLV-1 infected patients (47 with TSP/HAM) resident of Salvador, Brazil. The Mini International Neuropsychiatric Interview, Brazilian Version 5 was used to evaluate the presence of depression. Prevalence ratios were used to describe relationship between HAM/TSP and depression. The HAM/TSP classification was carried out according to the criteria proposed by Castro-Costa et al. RESULTS: Prevalence of depression was 37.96%. No association was observed between presence of HAM/TSP and diagnosis of current major depression in the global analysis of patients (PR: 0.94; CI 95%: 0.57-1.55). In the stratified analysis, however, greater prevalence of depression was observed amongst individuals with HAM/TSP in the 18-39 age group (PR: 2.59; CI 95%: 1.36-4.95). CONCLUSION: Our findings suggest that age is an effect modifier in the relationship between HAM/TSP and depression, and this aspect should be considered in future studies on the topic.

Depressão, desesperança e percepção de suporte familiar em pacientes com HTLV-1 / Depression, hopeless and family support in HTLV-1

Doenças crônicas e sem cura podem provocar sofrimento psíquico e insatisfatória qualidade de vida. Nesta pesquisa, foram abordados pacientes com infecção para HTLV-1 (vírus linfotrópico da célula humana do tipo 1), vírus sem cura que pode causar paresia ou plegia dos membros inferiores e leucemia/linfoma de células T do adulto (ATLL). Buscou-se compreender se o sofrimento psíquico (depressão e/ou desesperança) e a percepção da qualidade de vida destes pacientes poderiam fazer diferença na percepção de suporte familiar e ainda, se haveriam diferenças significativas entre os pacientes sintomáticos e assintomáticos, nos quesitos, depressão, desesperança, qualidade de vida e suporte familiar percebido. A coleta de dados aconteceu no ambulatório de HTLV do Instituto de Infectologia Emílio Ribas. A amostragem foi constituída por 59 pacientes, sendo que 31 eram sintomáticos e 28 assintomáticos para HAM/TSP (paraparesia espástica tropical), 43 (72,9%) eram do sexo feminino, as idades variaram entre 19 e 73 anos e a média foi de 50 anos. Os dados foram coletados por meio de 5 instrumentos: Questionário Sociodemográfico, Escala Beck de Depressão (BDI), Escala Beck de Desesperança (BHS), Inventário de Percepção de Suporte Familiar (IPSF) e Escala de Qualidade de Vida (SF-36). Para análise dos dados foram feitas análises descritivas teste t-student, coeficiente de correlação de Pearson e avaliação da diferença entre os grupos, através do d de Cohen. Os resultados apontaram os pacientes sintomáticos com maior grau de depressão, o grau de desesperança encontrado foi mínimo para ambos os grupos, a média de percepção de qualidade de vida tanto para assintomáticos, quanto para sintomáticos foi satisfatória, exceto no fator que avalia a Adaptação Familiar, que apresentou média-baixa. Foram encontradas correlações negativas e significativas somente entre desesperança e fator 1 do IPSF para os pacientes sintomáticos e entre desesperança e todos os fatores do IPSF, para os pacientes assintomáticos. Entre depressão e os fatores do IPSF verificou-se correlação negativa significativa para os sintomáticos somente com o fator 1 e para os pacientes assintomáticos somente entre o valor total e o fator 1. Entre os domínios de qualidade de vida e o IPSF verificou-se correlação com o valor total e o fator 1 e os domínios Capacidade Funcional e Aspectos Sociais. Conclui-se que pacientes sintomáticos e assintomáticos, participantes desta pesquisa, diferem-se nos níveis de depressão, em todos os domínios de qualidade de vida e no fator 3 do IPSF, referente a autonomia familiar. (AU)

Incurable chronic diseases can lead to psychological distress and poor quality oflife. This study has addressed patients with HTLV-1.....We sought to find out whether psychological distress (depression and/or hopelessness) andperceived quality of life could influence these patients’ perceived family support,and whether there would be significant differences between symptomatic andasymptomatic patients in term..... The sample consisted of 59patients: 31 were symptomatic; 28, asymptomatic for HAM/TSP (tropical spasticparaparesis); 43 (72.9%) were female, between 19-73 years old, and themedian age was 50. Five instruments were used for collecting data:Sociodemographic Questionnaire, Beck Depression Inventory (BDI), BeckHopelessness Scale (BHS), Inventory of Perceived Family Support (IPFS), andQuality of Life Scale (QOLS-36)...Symptomatic patients showed mid-low scores on perceived Family support, except the factor that evaluates Consistent Affective Aspects, whichs Yet, asymptomatic patients had medium-high scores in almost all categories, except the factor that evaluates Family Adjustment, which showed medium-low. We found negative, significant correlation betweenhopelessness and IPFS factor 1 for symptomatic patients, and betweenhopelessness and the overall total, factor 1, fator 2 and factor 3, forasymptomatic patients. We found negative, significant correlation betweendepression/IPFS factors for symptomatic patients and factor 1; for theasymptomatic patients, the same was found only between the overall total andfactor 1. We found correlation between quality of life and IPFS and the overalltotal and factor 1 and Functional Capacity and Social Aspects. We conclude that the participants in this study, both symptomatic and asymptomatic patients,show different levels of depression in all aspects of quality of life and in IPFSfactor 3, regarding family autonomy (AU).

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.

Implications of HAM/TSP functional incapacity in the quality of life.

OBJECTIVE: To identify the functional status and quality of life of HAM/TSP patients. METHOD: We evaluated prospectively 30 HAM/TSP patients (20 females) seen in the Neuroinfection Clinic of the HUGG. The functional capacity was analyzed by the functional independence measure (FIM), the expanded disability status (EDSS) scale and the Osame's motor disability score (OMDS). The quality of life was assessed by the Short-Form Health Survey 36 (SF-36)TM. RESULTS: All patients need assistance device. The FIM, OMDS and EDSS scores classified 70%, 67% and 67% of the patients as dependent, respectively. The lowest scores of the SF-36 survey were found in the domains related to the physical health (D1, D2), role-emotional functioning (D7) and social functioning (D6). CONCLUSION: Our data suggest that the HAM/TSP physical impairment has an impact in the emotional and social issues, considering the limitation in the daily activities.

Implications of HAM/TSP functional incapacity in the quality of life / Implicações da incapacidade funcional na qualidade de vida de pacientes com HAM/TSP

OBJECTIVE: To identify the functional status and quality of life of HAM/TSP patients. METHOD: We evaluated prospectively 30 HAM/TSP patients (20 females) seen in the Neuroinfection Clinic of the HUGG. The functional capacity was analyzed by the functional independence measure (FIM), the expanded disability status (EDSS) scale and the Osame's motor disability score (OMDS). The quality of life was assed by the Short-Form Health Survey 36 (SF-36)TM. RESULTS: All patients need assistance device. The FIM, OMDS and EDSS scores classified 70 percent, 67 percent and 67 percent of the patients as dependent, respectively. The lowest scores of the SF-36 survey were found in the domains related to the physical health (D1, D2), role-emotional functioning (D7) and social functioning (D6). CONCLUSION: Our data suggest that the HAM/TSP physical impairment has an impact in the emotional and social issues, considering the limitation in the daily activities.

OBJETIVO: Avaliar a capacidade funcional e sua interferência na qualidade de vida de pacientes com HAM/TSP. MÉTODO: Foram analisados prospectivamente 30 casos (20 mulheres) de HAM/TSP, atendidos no Ambulatório de Neuroinfecção do HUGG. As escalas para avaliação da capacidade funcional consistiram em: medida de independência funcional (FIM), escala de incapacidade expandida (EDSS) e pontuação da incapacidade motora de Osame (OMDS). A qualidade de vida foi analisada pelo Short-Form 36 Health Survey (SF-36)TM. RESULTADOS: Todos os pacientes necessitavam de assistência para deambular. As escalas FIM, OMDS e EDDS classificaram 70 por cento, 67 por cento e 67 por cento dos pacientes como dependentes, respectivamente. A avaliação pelo SF-36 demonstrou menores escores nos domínios físico (D1, D2), emocional (D7) e social (D6). CONCLUSÃO: Os achados sugerem que a limitação nas atividades diárias decorrentes do envolvimento físico comprometem aspectos emocionais e sociais na HAM/TSP.

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.

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

UNLABELLED: 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.

Disability and determinants of gait performance in tropical spastic paraparesis/HTLV-I associated myelopathy (HAM/TSP).

STUDY DESIGN: Cross-sectional. OBJECTIVES: The aim of this survey is to describe the disability profile in a group of tropical spastic paraparesis/HTLV-I-associated myelopathy patients, identifying the requirements for community ambulation. SETTING: Tertiary care unit, Rio de Janeiro, Brazil. METHODS: Seventy-two patients were assessed (49 female and 23 male), referred by tertiary care centers, when a clinical protocol was applied. RESULTS: The sample had an average age of 40 years and an average of 137 months of duration of the disease. The most prevalent aspects of disability found were in gait and sphincter control areas. A total of 72% of the patients were community ambulators and 17% were restricted to wheel chair. Age, strength and low-back pain interfere in activities of daily living (P<0.05). A positive correlation was found between community ambulation and the knee extensors (r=0.80) and ankle plantar flexors (r=0.74). Strength, age, low-back pain, duration of disease, asymmetric onset of the symptoms and spasticity interfered in the ability to walk (P<0.05). A rehabilitation program was proposed focusing on modifiable factors that affect disability level. CONCLUSION: It was possible to describe the profile of disability in this group of patients, identifying the requirements to the community ambulation.

Neuropsychological assessment in HTLV-1 infection: a comparative study among TSP/HAM, asymptomatic carriers, and healthy controls.

BACKGROUND: Human T cell lymphotropic virus type 1 (HTLV-I) can cause tropical spastic paraparesis/HTLV-1 associated myelopathy (TSP/HAM) and adult T cell leukaemia/lymphoma. More recently other diseases such as isolated peripheral polyneuropathy, myopathy, artropathy, and uveitis have been associated with this retrovirus. Only a few uncontrolled studies, without necessary exclusion criteria, have described mild cognitive deficits among TSP/HAM patients. To further clarify this the authors evaluated, through neuropsychological testing patients with TSP/HAM and asymptomatic infected carriers, comparing both groups with healthy controls. OBJECTIVES: To verify the presence of cognitive deficits among TSP/HAM patients and asymptomatic HTLV-1 infected carriers. In addition, the authors aimed to investigate if these deficits correlated with the degree of motor impairment in TSP/HAM patients. METHODS: From a cohort of 501 HTLV-1 infected people the authors selected, according to predefined inclusion and exclusion criteria, 40 asymptomatic HTLV-1 carriers and 37 TSP/HAM patients. Neuropsychological testing was blindly performed in both groups and their scores were compared with those obtained from controls. RESULTS: Both the HTLV-1 carrier group and the group of patients with TSP/HAM exhibited a lower performance in neuropsychological tests when compared with controls. Asymptomatic infected carriers and TSP/HAM patients did not differ in their cognitive results. Also, there was no relation between the degree of motor disability and cognitive deficits in the TSP/HAM group. Psychomotor slowing and deficits in the some domains characterised the neuropsychological impairment in HTLV-1 infection: verbal and visual memory, attention and visuomotor abilities. CONCLUSIONS: TSP/HAM as well as asymptomatic infection can be associated with mild cognitive deficits. This finding, if confirmed by further studies, will permit the inclusion of cognitive impairment among the neurological manifestations of HTLV-1.

[Subcortical dementia in HTLV-I tropical spastic paraparesis. Study of 43 cases]. / Demencia subcortical en paraparesia espástica tropical asociada a HTLV-I: estudio de 43 casos.

BACKGROUND: Central nervous system damage associated to HTLV-I does not limit itself to the spinal cord, but also involves subcortical structures, producing cognitive impairment and behavioral changes which eventually could conform a new form of subcortical dementia. AIM: To study cognitive changes in patients with HTLV-I associated myelopathy. PATIENTS AND METHODS: Forty three patients (31 female) with Tropical Spastic Paraparesis, aged 52 years old as a mean and with a disease lasting a mean of 7.5 years, were studied. The diagnosis was based on clinical, radiological and neurophysiological changes. The virus was identified with ELISA, indirect immunofluorescence, Western Blot or proviral DNA identification. Cognitive assessment was done using the Wechler Adult Intelligence Scale (WAIS) and Benton Visual Retention Test (form D). Patients were grouped according to their motor disability in; 23 patients with independent spastic gait, 11 patients that needed support to walk and 9 patients unable to walk. RESULTS: WAIS test demonstrated cognitive impairment with special deficit in some subtests such as Digit Span, Digit Symbol, Picture Arrangement and Object Assembly. Benton Test also disclosed cognitive impairment. There was a positive relationship between cognitive and motor performance. CONCLUSIONS: At least 50% of patients with Tropical Spastic Paraparesis have certain degree of intellectual and affective impairment.

Demencia subcortical en paraparesia espástica tropical asociada a HTLV-I: estudio de 43 casos / Subcortical dementia in HTLV-I tropical spastic paraparesis: study of 43 cases

Background: Central nervous system damage associated to HTLV-I does not limit itself to the spinal cord, but also involves subcortical structures, producing cognitive impairment and behavioral changes which eventually could conform a new form of subcortical dementia. Aim: To study cognitive changes in patients with HTLV-I associated myelopathy. Patients and methods: Forty three patients (31 female) with Tropical Spastic Paraparesis, aged 52 years old as a mean and with a disease lasting a mean of 7.5 years, were studied. The diagnosis was based on clinical, radiological and neurophysiological changes. The virus was identified with ELISA, indirect immunofluorecence, Western Blot or proviral DNA identification. Cognitive assessment was done using the Wechler Adult Intelligence Scale (WAIS) and Benton Visual Retention Test (form D). Patients were grouped according to their motor disability in; 23 patients with independent spastic gait, 11 patients that needed support to walk and 9 patients unable to walk. Results: WAIS test demonstrated cognitive impairment with special deficit in some subtests such as Digit Span, Digit Symbol, Picture Arrangement and Object Assembly. Benton Test also disclosed cognitive impairment. There was a positive relationship between cognitive and motor performance. Conclusions: At least 50 percent of patients with Tropical Spastic Paraparesis have certain degree of intellectual and affective impairment

Coping mechanisms in tropical spastic paraparesis (TSP)

Tropical spastic paraparesis (TSP), a slowly progressive spinal cord disorder has gained much attention since the discovery of its cause, the retrovirus human T lymphotropic virus type I (HTVL-I), which is similar to the virus responsible for the acquired immunodeficiency syndrome. This study was designed to determine the relationship between socio-demographic and psycho-social factors and the coping skills of TSP patients treated at the University Hospital of the West Indies during 1995. The sample consisted of 45 patients who were identified by way of a face to face interview. From the findings of the study it was seen that there was a relationship between family support, social status and social coping. Other socio-demographic and psycho-social factors such as age, sex, marital status and self esteem showed no relationship. The study suggested the need for a team approach in the management of TSP patients aimed at bringing out the most adapted coping strategies of which the patient is capable. (AU)