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.

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.