The effect of home exercise on the posture and mobility of people with HAM/TSP: a randomized clinical trial.

BACKGROUND: Physical therapy has positive results in people with tropical spastic paraparesis (TSP). However, mobility and distance from rehabilitation centers limit the participation in outpatient programs. OBJECTIVE: To evaluate the impact of a home exercise program on the posture and functional mobility of people with TSP. METHODS: A randomized controlled trial comparing three groups of people who performed guided exercises from a guidebook for six months: supervised (SG), unsupervised (WG), and control (CG). Primary outcomes: postural angles (SAPO®) and functional mobility (TUG). SECONDARY OUTCOMES: gait parameters (CVMob®). RESULTS: The protocol described in the guidebook improved postural angles and functional mobility. There were also positive gait parameter effects (p<0.05). SG presented better responses than WG did, but both were preferable to CG. CONCLUSION: Home exercises oriented by a guidebook may benefit posture, functional mobility and gait parameters in people with TSP, and physiotherapist supervision can ensure better results.

The effect of home exercise on the posture and mobility of people with HAM/TSP: a randomized clinical trial / Efeitos de exercícios domiciliares sobre a postura e mobilidade de pessoas com HAM/TSP: ensaio clínico randomizado

Abstract Background: Physical therapy has positive results in people with tropical spastic paraparesis (TSP). However, mobility and distance from rehabilitation centers limit the participation in outpatient programs. Objective: To evaluate the impact of a home exercise program on the posture and functional mobility of people with TSP. Methods: A randomized controlled trial comparing three groups of people who performed guided exercises from a guidebook for six months: supervised (SG), unsupervised (WG), and control (CG). Primary outcomes: postural angles (SAPO®) and functional mobility (TUG). Secondary outcomes: gait parameters (CVMob®). Results: The protocol described in the guidebook improved postural angles and functional mobility. There were also positive gait parameter effects (p<0.05). SG presented better responses than WG did, but both were preferable to CG. Conclusion: Home exercises oriented by a guidebook may benefit posture, functional mobility and gait parameters in people with TSP, and physiotherapist supervision can ensure better results.

Resumo Introdução: A fisioterapia apresenta resultados positivos em pessoas com paraparesia espástica tropical (PET). Entretanto, a dificuldade de locomoção e a distância dos centros de reabilitação limitam a participação em programas ambulatoriais. Objetivo: Avaliar o impacto de um programa de exercícios domiciliares na postura e mobilidade funcional de pessoas com PET. Métodos: Um ensaio clínico randomizado comparou três grupos de pessoas que realizaram exercícios guiados por cartilha: com supervisão (GS), sem supervisão (GN) e controle (GC) durante seis meses. Desfechos primários: ângulos posturais (SAPO®) e mobilidade funcional (TUG). Desfechos secundários: parâmetros da marcha (CVMob®). Resultados: O protocolo descrito na cartilha melhorou os ângulos posturais e a mobilidade funcional. Os resultados também foram positivos para os parâmetros da marcha (p<0,05). O GS apresentou melhores respostas que o GN, porém ambos foram preferíveis ao GC. Conclusão: Exercícios domiciliares orientados por cartilha podem ser úteis para beneficiar a postura, mobilidade funcional e parâmetros de marcha em pessoas com PET, e a supervisão do fisioterapeuta possibilita garantir melhores resultados.

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.

Influence of proprioceptive neuromuscular facilitation on the muscle tonus and amplitude of movement in HTLV-1-infected patients with HAM/TSP.

An HTLV-1-infected patient can develop paraparesis that limits their movements. Rehabilitation techniques could improve the motor abilities of these patients. The present study investigates five cases of physical therapy intervention in HTLV-1 patients to evaluate the influence of functional rehabilitation on the tonus and range of motion (ROM) of HTLV-1 patients with spasticity. The patients had a gain of ROM, especially in the lower limb, and reduction in hypertonia/spasticity after functional treatment. The reduction in hypertonia increased the ROM. Thus, functional methods may be valuable for the rehabilitation of HTLV-1 patients with neurological damage.

Influence of proprioceptive neuromuscular facilitation on the muscle tonus and amplitude of movement in HTLV-1-infected patients with HAM/TSP

Abstract An HTLV-1-infected patient can develop paraparesis that limits their movements. Rehabilitation techniques could improve the motor abilities of these patients. The present study investigates five cases of physical therapy intervention in HTLV-1 patients to evaluate the influence of functional rehabilitation on the tonus and range of motion (ROM) of HTLV-1 patients with spasticity. The patients had a gain of ROM, especially in the lower limb, and reduction in hypertonia/spasticity after functional treatment. The reduction in hypertonia increased the ROM. Thus, functional methods may be valuable for the rehabilitation of HTLV-1 patients with neurological damage.

Home-based exercise program in TSP/HAM individuals: a feasibility and effectiveness study.

OBJECTIVE: To investigate the feasibility and effectiveness of a home-based exercise program in TSP/HAM individuals. METHODS: Twenty-three TSP/HAM individuals divided in two groups according to Timed Up and Go (TUG) score (<20s vs ≥20s) performed a 20-week home-based exercise program. The primary outcomes were exercise adherence, maximum voluntary isometric contraction of lower limbs (MVIC), Barthel Index and SF-36. Secondary outcomes were adverse effects and barriers to exercise practice. RESULTS: MVIC and the social functioning domain in SF-36 improved significantly in TUG <20s group. The individuals in the TUG ≥20s group improved significantly their physical functioning domain in SF-36. The total adherence to the 20-week home-based exercise program was 90%. There were mild to moderate adverse events related to exercise program. There were no adverse events related to MVIC test. CONCLUSIONS: The home-based exercise program was feasible and effective in improving disability and quality of life in individuals with TSP/HAM.

Home-based exercise program in TSP/HAM individuals: a feasibility and effectiveness study / Programa de exercícios domiciliares em indivíduos com PET/MAH: um estudo de viabilidade e efetividade

ABSTRACT Objective To investigate the feasibility and effectiveness of a home-based exercise program in TSP/HAM individuals. Methods Twenty-three TSP/HAM individuals divided in two groups according to Timed Up and Go (TUG) score (<20s vs ≥20s) performed a 20-week home-based exercise program. The primary outcomes were exercise adherence, maximum voluntary isometric contraction of lower limbs (MVIC), Barthel Index and SF-36. Secondary outcomes were adverse effects and barriers to exercise practice. Results MVIC and the social functioning domain in SF-36 improved significantly in TUG <20s group. The individuals in the TUG ≥20s group improved significantly their physical functioning domain in SF-36. The total adherence to the 20-week home-based exercise program was 90%. There were mild to moderate adverse events related to exercise program. There were no adverse events related to MVIC test. Conclusions The home-based exercise program was feasible and effective in improving disability and quality of life in individuals with TSP/HAM.

RESUMO Objetivo Investigar a viabilidade e eficácia de um programa de exercícios domiciliares (PED) em indivíduos com PET/MAH. Métodos 23 indivíduos com PET/MAH divididos em dois grupos conforme teste Timed Up and Go - TUG (<20s vs ≥20s) realizaram o PED durante 20 semanas. Desfechos primários – adesão aos exercícios, contração isométrica voluntária máxima dos membros inferiores (CIVM), Índice de Barthel e SF-36. Desfechos secundários – ocorrência de eventos adversos e presença de barreiras à prática de exercícios. Resultados CIVM e componente “Aspectos Sociais” da SF-36 aumentaram significativamente no grupo TUG <20s. Os indivíduos do grupo TUG ≥20s aumentaram significativamente componente “Capacidade Funcional” da SF-36. A adesão ao PED foi de 90%. Foram observados eventos adversos de intensidade leve a moderada relacionados ao PED. Não foram encontrados eventos adversos relacionados à CIVM. Conclusões O PED é viável e eficaz em melhorar a incapacidade e a qualidade de vida de indivíduos com PET/MAH.

Paraparesia espástica tropical en una región no tropical / Tropical spastic paraparesis in a non tropical region

Introducción. El virus linfótropo humano de células T tipo 1 (HTLV-1) es el agente causal de la paraparesia espástica tropical. Su prevalencia, elevada en determinadas áreas tropicales, es baja en Europa y Norteamérica. Casos clínicos. Se describen dos casos de paraparesia espástica tropical en varones naturales y residentes en Galicia. Se realizaron estudios analíticos en la sangre y el líquido cefalorraquídeo (LCR), exámenes neurofisiológicos y resonancia magnética craneal y medular. En ambos pacientes, la presentación clínica fue la de una mielopatía crónica, con cuadro tórpido y progresivo que evolucionó a paraparesia espástica. Un paciente desarrolló uveítis antes de la clínica neurológica. En los dos casos, el estudio del LCR demostró leve pleocitosis linfoide, ligera hiperproteinorraquia, bandas oligoclonales negativas y anticuerpos anti-HTLV-1 positivos. La reacción en cadena de la polimerasa para HTLV-1 resultó positiva en ambos casos. La resonancia magnética raquídea resultó normal en un paciente y mostró en el otro hiperseñal medular dorsal, que desapareció tras el tratamiento. No se demostraron datos de polineuropatía periférica. Recibieron corticoides e interferón alfa, con leve mejoría y estabilización del cuadro clínico. La anamnesis dirigida reveló antecedentes de contactos sexuales de riesgo en regiones endémicas de HTLV-1. Conclusiones. La uveítis asociada a HTLV-1 podría ser predictora de paraparesia espástica tropical. Ésta es probablemente una entidad infradiagnosticada (alto porcentaje de portadores asintomáticos, clínica insidiosa y bajo índice de sospecha en áreas no endémicas). Debe considerarse su diagnóstico en zonas no tropicales que reciben inmigrantes de áreas endé- micas y también en regiones con una tradicional emigración a regiones tropicales (AU)

Introduction. Human T-lymphotropic virus 1 (HTLV-1) associated myelopathy/tropical spastic paraparesis (HAM/TSP) is a prevalent disease in certain tropical regions endemic for HTLV-1, being a rare entity in areas such as Europe and North America. Case reports. We report two new cases of HAM/TSP in Caucasians, native from Galicia, Spain. Serum and cerebrospinal fluid (CSF) analysis, clinical neurophysiologic studies and brain and spinal cord MRI scans were performed. Both patients presented a progressive chronic myelopathy, evolving to spastic paraparesis; one of them presenting with uveitis, prior to the onset of neurological symptoms. CSF analysis revealed mild lymphocytic pleocytosis and increased protein concentration with positive anti-HTLV-1 antibodies. Polymerase chain reaction was positive for HTLV-1. Oligoclonal bands were not detected. In one of the patients, MRI scans did not reveal abnormalities whilst in the other there was an elongated high intensity lesion at the thoracic spinal cord level, which resolved after treatment. No evidence of peripheral neuropathy was found. Corticosteroids and interferon alpha therapy was started, with moderate functional improvement. A history of unprotected sexual relationships while travelling to HTLV-1 endemic areas was revealed. Conclusions. HTLV-1-associated uveitis may predict HAM/TSP. HAM/TSP is probably an underdiagnosed disease due to the high prevalence of asymptomatic carriers, insidious clinical presentation and low suspicion index in non-endemic regions for HTLV-1. In non-tropical countries, HAM/TSP should not only be suspected in migrants from endemic areas for HTLV-1, but also in patients from communities with a tradition of migration to tropical countries (AU)

Using the International Classification of Functioning, Disability and Health as a tool for analysis of the effect of physical therapy on spasticity in HAM/TSP patients.

INTRODUCTION: This study aimed to evaluate spasticity in human T-lymphotropic virus type 1-associated myelopathy/tropical spastic paraparesis (HAM/TSP) patients before and after physical therapy using the International Classification of Functioning, Disability and Health (ICF). METHODS: Nine subjects underwent physical therapy. Spasticity was evaluated using the Modified Ashworth Scale. The obtained scores were converted into ICF body functions scores. RESULTS: The majority of subjects had a high degree of spasticity in the quadriceps muscles. According to the ICF codes, the spasticity decreased after 20 sessions of physical therapy. CONCLUSIONS: The ICF was effective in evaluating spasticity in HAM/TSP 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.

A case report of HTLV-I associated myelopathy presenting with cerebellar ataxia and nystagmus.

HTLV-I associated myelopathy/tropical spastic paraparesis (HAM/TSP) is characterized by spastic paraparesis in the lower extremities, and urinary disturbance. HAM/TSP has also been less frequently associated with cerebellar syndromes and nystagmus. We report a case of HAM/TSP presenting with cerebellar ataxia and nystagmus. The patient was a 73-year-old woman who was born in southern Japan. At age 41, she developed pain and spasticity in the bilateral lower limbs and gradually progressive gait disturbance. At age 57, she was diagnosed with HAM/TSP based on spastic paraparesis in the lower limbs, urinary disturbance and positive anti HTLV-I antibody in serum and cerebrospinal fluid. In June 2008, she was referred to our university and hospitalized for rehabilitation. Twenty days later, she experienced rotatory vertigo sensation. Magnetic resonance imaging revealed pontocerebellar atrophy. The patient presented with cerebellar signs in the upper limbs, gaze-evoked nystagmus in the sitting position and right-beating horizontal nystagmus in the supine and head-hanging positions. Electronystagmography (ENG) showed horizontal saccadic overshoot dysmetria and horizontal saccadic pursuit. Nystagmus is rare among the literature on HAM/TSP. ENG is helpful to evaluate and confirm the cerebellar syndromes of HAM/TSP.

Mielopatía HTLV-I positivo

La mielopatía HTLV-I positivo es una enfermedad de origen viral, caracterizada por comienzo lento, dolor lumbar y trastornos de la marcha; puede presentar diversos grados de compromiso, desde las formas asintomáticas hasta cuadros severos crónicos con postración total al lecho, Después de muchas especulaciones de tipo nutricional, neurotóxico, bacteriano, etc., hoy se conoce que sus agentes causales son retrovirus HTVL-I y HTVL-II. Las manifestaciones clínicas una vez instalado el cuadro patológico son sificultad para la marcha, notable disminución de la líbido, compromiso de esfinteres y una lenta y progresiva incapacidad para sostenerse en pie. La enfermedad afecta por igual a hombres y mujeres, a veces con carácter familiar, y la mayoría de los pacientes están alrededor de 30 - 35 años. La evolución en promedio es de unos 3-5 años, aunque hay pacientes cuya enfermedad tiene 10 a 20 años de duración. Ningún paciente fallece por causa de la enfermedad. Presentamos una relación de los casos observados en el área de influencia de nuestro Hospital Universitario San José

An illustration of clinical gait laboratory use to improve rehabilitation management.

The purpose of this report is to illustrate the utility of a gait laboratory as a simple, straightforward aid to psychiatric care. The evaluation and management of a patient with spastic paresis and reduced knee flexion in swing (stiff-legged gait), using quantitative gait analysis, are provided. Spastic quadriceps activity during swing was thought to be the cause of reduced knee flexion, based on traditional physiatric history and physical examination. Gait laboratory analysis, including lower extremity kinematic, kinetic and dynamic electromyographic measurements, demonstrated that the quadriceps were not inappropriately active, as had been expected and suggested, instead, that the reduced knee flexion was secondary to dynamic ankle plantar flexor weakness. Modification of an ankle-foot-orthosis and specific exercises to strengthen the ankle plantar flexors were, therefore, prescribed and resulted in kinematic and kinetic improvements at subsequent gait analysis and a subjective feeling by the patient that gait was better. Gait laboratory analysis was useful in determining the optimal rehabilitation plan.

Walking efficiency before and after long-term muscle stretch in patients with spastic paraparesis.

Eight patients with stationary, spastic paraparesis were treated with long-term stretch of the hip adductor muscles to improve walking ability. Gait pattern, walking speed and perceived exertion of walking were assessed. Walking efficiency was assessed before and after treatment by measuring oxygen consumption and blood lactate level. After treatment walking pattern was improved. Perceived exertion decreased but walking speed was unchanged. Oxygen cost directly after treatment was lower in six patients, unchanged in one and higher in one. In the patient with unchanged oxygen cost the blood lactate level decreased, probably due to decreased recruitment of fast, type II muscle fibres. Blood lactate was unchanged in the other patients. When assessing walking ability, measurement of energy cost was found to be a valuable supplement to clinical judgement, but in spastic patients both oxygen cost and blood lactate must be considered.