Patient research priority setting partnership in human T-cell lymphotropic virus type I

Area of Science:

• Virology
• Public Health
• Patient-Centered Research

Background:

• Human T-cell lymphotropic virus type 1 (HTLV-1) is a chronic infection impacting millions globally.
• A significant percentage of infected individuals develop serious conditions like HTLV-1-associated myelopathy (HAM).
• Low health-related quality of life (HRQoL) is prevalent, yet patient needs from healthcare remain under-researched.

Purpose of the Study:

• To identify research priorities for HTLV-1 health service provision through direct patient involvement.
• To understand the impact of HTLV-1 on daily life and patient needs.
• To foster person-centered research in HTLV-1.

Main Methods:

• Six virtual workshops and two consolidation workshops were conducted with individuals diagnosed with HTLV-1, primarily HAM.
• Workshop content was developed iteratively from focused group discussions and analyzed thematically.
• Participants engaged in consensus voting to rank research priorities, followed by a feedback session.

Main Results:

• Twenty-seven people with HTLV-1 participated, with most diagnosed with HAM.
• The top three research priorities identified were understanding disease progression, psychosocial wellbeing, and information/knowledge needs.
• Participants expressed high value for being involved in setting research priorities relevant to their needs.

Conclusions:

• This study represents a novel approach to research engagement with HTLV-1 patients in the UK.
• Identified research priorities offer avenues for improving healthcare services and HRQoL.
• The workshops initiated a dialogue for more meaningful, person-centered HTLV-1 research, leading to a patient-led advisory group.