Observational studyPLoS neglected tropical diseases2020
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.
Observational study in PLoS neglected tropical diseases, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
30 citing papers in PubMed, 2 syntheses or guidelines pooled it, 37 citations in OpenAlex.
- The Global Prevalence of HTLV-1 and HTLV-2 Infections among Immigrants and Refugees-A Systematic Review and Meta-Analysis.Viruses · 2024Pooled it
- How do socioeconomic determinants of health affect the likelihood of living with HTLV-1 globally? A systematic review with meta-analysis.Frontiers in public health · 2024Pooled it
- Darifenacin Versus Parasacral Transcutaneous Electric Nerve stimulation for overactive bladder syndrome in patients infected with Human T-Lymphotropic Virus 1 - randomized open clinical trial.International braz j urol : official journal of the Brazilian Society of UrologyTrial
- Use of the 10-meter timed walk for monitoring long-term gait progression in human T-cell leukemia virus type 1-associated myelopathy/tropical spastic paraparesis: a 10-year analysis from the Japanese HAM-net registry.Orphanet journal of rare diseases · 2026Article
- Morbidity and Mortality Among People Living With HTLV-1: A 30-Year Retrospective Analysis in a Brazilian Cohort.Journal of medical virology · 2026Article
- Multi-cohort cross-omics analysis reveals disease mechanisms and therapeutic targets in HTLV-1-associated myelopathy, a neglected retroviral neuroinflammatory disorder.Research square · 2025Article
- Cognitive Assessment in HTLV-1 Patients Followed Up at a Reference Center in Salvador, Brazil.Viruses · 2024Observational
- Neurological aspects of HTLV-1 infection: symptoms in apparently asymptomatic carriers.Journal of neurovirology · 2024Observational
- Cell Culture Evaluation Hints Widely Available HIV Drugs Are Primed for Success if Repurposed for HTLV-1 Prevention.Pharmaceuticals (Basel, Switzerland) · 2024Article
- Impact and economic analysis of human T-cell lymphotropic virus type 1 (HTLV-1)-targeted antenatal screening, England and Wales, 2021.Euro surveillance : bulletin Europeen sur les maladies transmissibles = European communicable disease bulletin · 2024Article
- Making HTLV-1 and those affected visible.Nature microbiology · 2024Article
- IL-10 predicts incident neuroinflammatory disease and proviral load dynamics in a large Brazilian cohort of people living with human T-lymphotropic virus type 1.Frontiers in immunology · 2024Article
- Incidence of HTLV-1-associated myelopathy in the UK from 1991 to 2024: a longitudinal observational cohort study.Frontiers in medicine · 2024Article
- Patient research priority setting partnership in human T-cell lymphotropic virus type I.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- COVID-19 among People Living with HTLV-1 Infection in Rio de Janeiro, Brazil.Pathogens (Basel, Switzerland) · 2023Article
- Cost-effectiveness of human T-cell leukemia virus type 1 (HTLV-1) antenatal screening for prevention of mother-to-child transmission.PLoS neglected tropical diseases · 2023Article
- Viral-induced neuroinflammation: Different mechanisms converging to similar exacerbated glial responses.Frontiers in neuroscience · 2023Review
- Association of theViruses · 2022Article
- Cabotegravir, the Long-Acting Integrase Strand Transfer Inhibitor, Potently Inhibits Human T-Cell Lymphotropic Virus Type 1 TransmissionFrontiers in medicine · 2022Article
- HDAC inhibitors Panobinostat and Romidepsin enhanceFrontiers in immunology · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors at 6 institutions in 2 countries.
Funding
Abstract
backgroundHTLV-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.
methodsA 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
findingsHealth 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.
conclusionHTLV-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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.