Santana Genildes Oliveira, Libório Ana Mary, Galvão Ana Verena, Pondé Milena Pereira, Sá Katia Nunes
Department of Post Graduate, Bahiana School of Medicine and Public Health, Salvador, Bahia, Brazil.
Multidisciplinary Reference Center for Assistance and Research for Family and Patients with HTLV the Assisting Teaching the Bahia School of Medicine and Public Health, Salvador, Bahia, Brazil.
J Patient Rep Outcomes. 2020 May 4;4(1):31. doi: 10.1186/s41687-020-00198-6.
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.
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.
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.
人类嗜T细胞病毒1型（HTLV-1）在全球人群中悄然传播，并引发多种综合征。其中，HTLV-1相关脊髓病，也称为热带痉挛性截瘫（HAM/TSP），会影响神经系统。它会导致感觉运动丧失、痉挛、肌肉无力、排尿和性功能障碍、疼痛以及平衡失调。对于这种被忽视疾病相关的感受、经历和应对机制，人们了解有限。本定性研究的目的是通过焦点小组和个人半结构化面对面访谈获得的叙述，调查HAM/TSP患者的体征、意义和行为。
38名被诊断为HAM/TSP的个体参与了该研究。从参与者中出现了以下类别和子类别：体征——身体体征、症状和疾病发现；意义——对诊断的反应和疾病知识、恐惧及期望；行为——日常生活、休闲、宗教和治疗活动。
HAM/TSP患者遭受的症状限制了他们的社会参与，并且受到复杂和多维度感受的影响。这种认识有助于实施以这些患者的真实情况为重点的公共政策，为这些个体提供更有针对性、更具同理心和更和谐的护理。
