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.

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 / 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.

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