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

ABSTRACT:

Introduction

Human T-cell lymphotropic virus type 1 (HTLV-1) is a chronic infection affecting 5-10 million people worldwide. Ten percent develop HTLV-1-associated diseases, and 3%-5% develop HTLV-1-associated myelopathy (HAM)/tropical spastic paraparesis. Low health-related quality of life (HRQoL) is a significant concern for those with HTLV-1, and little is known about how it impacts daily life or what patients need from healthcare services. To address this, we report on patient involvement workshops aimed at identifying research priorities for HTLV-1 health service provision.

Methods

Participants recruited through HTLV-1 clinics in England attended six 90-min virtual workshops over 10 months, and two 60-min consolidation workshops. Content developed iteratively from topic

SUBMITTER: Adonis A 

PROVIDER: S-EPMC10632630 | biostudies-literature | 2023 Dec

REPOSITORIES: biostudies-literature