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

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.