Health state utility values in people living with HTLV-1 and in patients with HAM/TSP: The impact of a neglected disease on the quality of life

Abstract

Background: HTLV-1 is a neglected sexually transmitted infection despite being the cause of disabling neurological disease HTLV-1-associated myelopathy/tropical spastic paraparesis (HAM/TSP). There is no treatment for this infection and public health policies are essential to reduce its transmission. However, there are no data to support adequate cost-effective analysis in this field. The aim of this study was to obtain health state utility values for individuals with HAM/TSP and HTLV-1 asymptomatic carriers (AC). The impact of both states on quality of life (QoL) is described and compared to other diseases. Methods: A cross-sectional observational study of 141 individuals infected with HTLV-1 (79 with HAM/TSP and 62 AC) from three Brazilian states (Rio de Janeiro, São Paulo and Alagoas) and from the United Kingdom. Participants completed a validated general health questionnaire (EQ-5D, Euroqol) from which country specific health state utility values are generated. Clinical and epidemiological data were collated. Principal findings: Health state utility value for HAM/TSP was 0.2991. QoL for 130 reported clinical conditions ranges from 0.35 to 0.847. 12% reported their quality of life as worse as death. Low QoL was associated with severity rather than duration of disease with a moderate inverse correlation between QoL and Osame’s Motor Disability Score (-0.4933) Patients who are wheelchair dependent had lowest QoL whilst those still walking unaided had the highest. AC also reported impaired QoL (0.7121) compared to general population. Conclusion: HTLV-1 and its associated neurological disease has a marked impact on QoL. This study provides robust data to support the development of cost-utility analysis of interventions for HTLV-1.

Structural basis for the inhibition of HTLV-1 integration inferred from cryo-EM deltaretroviral intasome structures

“…It is the causative agent of a severe form of blood cancer called adult T-cell leukaemia/lymphoma (ATLL) 2 and a range of debilitating neuromuscular disorders—HTLV-associated myelopathy/tropical spastic paraparesis (HAM/TSP) 3 , which often lead to paralysis. Although only 5–10% of the estimated 10–20 million people 4 infected with HTLV-1 worldwide will develop ATLL 2 , a recent report showed that the vast majority of otherwise asymptomatic patients suffer from issues that severely impact their quality of life, including pain, discomfort and depression 5 . 12.7% of HAM/TSP patients reported their quality of life was worse than death 5 , based on the Euroqol five dimension questionnaire (EQ-5D).…”

“…Although only 5–10% of the estimated 10–20 million people 4 infected with HTLV-1 worldwide will develop ATLL 2 , a recent report showed that the vast majority of otherwise asymptomatic patients suffer from issues that severely impact their quality of life, including pain, discomfort and depression 5 . 12.7% of HAM/TSP patients reported their quality of life was worse than death 5 , based on the Euroqol five dimension questionnaire (EQ-5D).…”

Blocking HTLV-1/2 silent transmission in Brazil: Current public health policies and proposal for additional strategies

“…HTLV-1–associated myelopathy (HAM) is a debilitating condition that results from an inflammatory response mainly within the spinal cord, but with increasing evidence of widespread brain inflammation. HAM greatly impacts patient’s autonomy and quality of life, and, during follow-up, about 50% become wheelchair dependent [ 3 – 6 ]. In Brazil, the risk of HAM and other neurological diseases is reported to be higher than usual at 5% [ 7 – 9 ].…”

Specificity of HTLV screening tests and its impact on health care program costs: The perspective of antenatal screening in Brazil

“…Most people living with HTLV remain asymptomatic throughout their lifetime. However, the reduced quality of life due to HTLV-1 infection is becoming more evident, even in those considered asymptomatic 4 .…”