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

• Main Authors: Genildes Oliveira Santana, Ana Mary Libório, Ana Verena Galvão, Milena Pereira Pondé, Katia Nunes Sá
• Format: Article
• Language: English
• Published: SpringerOpen 2020-05-01
• Series: Journal of Patient-Reported Outcomes
• Subjects: Tropical spastic paraparesis; Human T-lymphotropic virus 1; Qualitative research; Psychosocial approach
• Online Access: http://link.springer.com/article/10.1186/s41687-020-00198-6

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.