# Self-management of HTLV-1-associated myelopathy/tropical spastic paraparesis in Japan: A qualitative study

## TL;DR

This study explores how people in Japan manage their HAM/TSP condition through self-management strategies due to the lack of a cure.

## Contribution

The study identifies six unique self-management strategies used by HAM/TSP patients in Japan.

## Key findings

- Six core self-management strategies were identified, including maintaining body functions and ensuring specialized treatment environments.
- HAM/TSP self-management is influenced by the disease's lack of curative treatment, low social awareness, and infectious nature.
- The findings suggest a need for personalized educational strategies and accessible support for patients.

## Abstract

HTLV-1 associated myelopathy/tropical spastic paraparesis (HAM/TSP) is a spastic spinal cord-related paralysis that is caused by a human T-lymphotropic virus type 1 infection. Common symptoms of HAM/TSP include gait disorder, bladder disturbance, constipation, and sensory symptoms. Because no curative treatment exists, individuals with HAM/TSP have to self-manage their chronic condition. Although patients with HAM/TSP have unique self-management strategies owing to their complex backgrounds, limited information is available on how they self-manage their chronic conditions. This study aimed to explore the self-management strategies of patients with HAM/TSP in Japan.

Using semi-structured interviews and an open-ended questionnaire, data were collected from seven participants with HAM/TSP. Interviews were transcribed verbatim. Data analysis was conducted using a qualitative content analysis method to identify categories that describe the self-management strategies of people with HAM/TSP.

Six core categories of self-management strategies of people with HAM/TSP were identified: “Attempting to maintain body functions”, “Acquiring new ways to complement body functions”, “Engaging to maintain an independent daily life”, “Ensuring a specialized treatment environment for HAM/TSP”, “Taking control of HAM/TSP”, and “Moving forward as people with HAM/TSP.”.

The self-management strategies of people with HAM/TSP are affected by three characteristics of HAM/TSP: the lack of an established curative treatment, the low social awareness of the disease, and its infectious nature. This study highlights the need for personalized educational strategies and accessible support for the development of self-management skills.

HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP) is a spastic spinal cord-related paralysis caused by the human T-lymphotropic virus type 1 infection. It is estimated that 3000 individuals in Japan have HAM/TSP, which presents with diverse symptoms that affect daily life. As HAM/TSP lacks an established curative treatment, patients must self-manage the impact of HAM/TSP on their daily lives. To facilitate informed nursing support that enables HAM/TSP self-management, in this study, we identified 6 self-management strategies of people with HAM/TSP: “Attempting to maintain body functions”, “Acquiring new ways to complement body functions”, “Engaging to maintain an independent daily life”, “Ensuring a specialized treatment environment for HAM/TSP”, “Taking control of HAM/TSP”, and “Moving forward as people with HAM/TSP.” Although the results of this study may not describe all aspects of self-management in patients with HAM/TSP, the findings provide an overview of self-management strategies and variations that constitutes foundational research findings in this area. This study suggests the necessity of personalized educational strategies and accessible support for the development of self-management skills.