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Signs, meanings and practices of people living with human t-cell lymphotropic virus type 1 or tropical spastic myelopathy.

ABSTRACT: BACKGROUND:Human T-cell lymphotropic virus type 1 (HTLV-1) spreads silently in the world's population and causes several syndromes. Among these, HTLV-1 associated myelopathy, also called tropical spastic paraparesis (HAM/TSP), affects the nervous system. It causes sensorimotor losses, spasticity, muscle weakness, voiding and sexual dysfunction, pain, and balance disorders. There is limited knowledge of the feelings, experiences, and coping mechanisms associated with this neglected disease. The objective of the present qualitative study was to investigate the signs, meanings, and practices of people with HAM/TSP, through narratives obtained from focus groups and individual semi-structured face-to-face interviews. RESULTS:Thirty-eight individuals diagnosed with HAM/TSP participated in the study. The following categories and subcategories emerged from the participants: Signs-physical signs, symptoms, and discovery of the disease; Meanings-reaction to diagnosis and knowledge of disease, fears, and expectations; Practices-daily life, leisure, religious, and treatment activities. CONCLUSIONS:People with HAM/TSP suffer from symptoms that limit their social participation, and they are affected by complex and multidimensional feelings. This awareness can contribute to the implementation of public policies-focused on the real perspective of these patients-that provide more directed, empathic, and harmonious care for these individuals.

SUBMITTER: Santana GO

PROVIDER: S-EPMC7198688 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

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Signs, meanings and practices of people living with human t-cell lymphotropic virus type 1 or tropical spastic myelopathy.

Santana Genildes Oliveira GO Libório Ana Mary AM Galvão Ana Verena AV Pondé Milena Pereira MP Sá Katia Nunes KN

Journal of patient-reported outcomes 20200504 1

<h4>Background</h4>Human T-cell lymphotropic virus type 1 (HTLV-1) spreads silently in the world's population and causes several syndromes. Among these, HTLV-1 associated myelopathy, also called tropical spastic paraparesis (HAM/TSP), affects the nervous system. It causes sensorimotor losses, spasticity, muscle weakness, voiding and sexual dysfunction, pain, and balance disorders. There is limited knowledge of the feelings, experiences, and coping mechanisms associated with this neglected diseas ...[more]

PMID: 32367401

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Project description:BackgroundHuman T-lymphotropic virus type 1 (HTLV-1) has been discovered in 1980 and has been linked to tropical spastic paraparesis (HAM/TSP) in 1985 in Martinique. There is no data on HAM/TSP incidence trends. We report, in the present work, the temporal trends incidence of HAM/TSP in Martinique over 25 years.MethodsMartinique is a Caribbean French West Indies island deserved by a unique Neurology Department involved in HAM/TSP diagnosis and management. A registry has been set up since 1986 and patients diagnosed for a HAM/TSP were prospectively registered. Only patients with a definite HAM/TSP onset between 1986 and 2010 were included in the present study. The 25-year study time was stratified in five-year periods. Crude incidence rates with 95% confidence interval (95%CI) were calculated using Poisson distribution for each period. Age-standardized rates were calculated using the direct method and the Martinique population census of 1990 as reference. Standardized incidence rate ratios with 95% CIs and P trends were assessed from simple Poisson regression models. Number of HTLV-1 infection among first-time blood donors was retrospectively collected from the central computer data system of the Martinique blood bank. The HTLV-1 seroprevalence into this population has been calculated for four 5-year periods between 1996 and 2015.ResultsOverall, 153 patients were identified (mean age at onset, 53+/-13.1 years; female:male ratio, 4:1). Crude HAM/TSP incidence rates per 100,000 per 5 years (95%CI) in 1986-1990, 1991-1995, 1996-2000, 2001-2005 and 2006-2010 periods were 10.01 (6.78-13.28), 13.02 (9.34-16.70), 11.54 (8.13-14.95), 4.27 (2.24-6.28) and 2.03 (0.62-3.43). Age-standardized 5-year incidence rates significantly decreased by 69% and 87% in 2001-2005 and 2006-2010 study periods. Patients characteristics did not differ regarding 1986-2000 and 2001-2010 onset periods. Between 1996-2000 and 2011-2015 study periods, the HTLV-1 seroprevalence significantly decreased by 63%.ConclusionMartinique faces a sudden and rapid decline of HAM/TSP incidence from 2001 in comparison to 1986-2000 periods. Reduction of HTLV-1 seroprevalence, that may result from transmission prevention strategy, could account for HAM/TSP incidence decrease.

Dataset Information

Signs, meanings and practices of people living with human t-cell lymphotropic virus type 1 or tropical spastic myelopathy.

Publications

Signs, meanings and practices of people living with human t-cell lymphotropic virus type 1 or tropical spastic myelopathy.

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