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Tytuł:
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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.
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Autorzy:
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Rosadas C; Section of Virology, Department of Infectious Disease, Imperial College London, London, United Kingdom.
Assone T; Faculdade de Medicina / Instituto de Medicina Tropical de São Paulo, Universidade de São Paulo, São Paulo, Brazil.
Yamashita M; Universidade Federal do Estado do Rio de Janeiro, Rio de Janeiro, Brazil.
Adonis A; National Centre for Human Retrovirology, St. Mary's Hospital, Imperial College Healthcare NHS Trust, London, United Kingdom.
Puccioni-Sohler M; Universidade Federal do Estado do Rio de Janeiro, Rio de Janeiro, Brazil.; Universidade Federal do Rio de Janeiro, Rio de Janeiro, Brazil.
Santos M; Instituto Nacional de Cardiologia, Núcleo de Avaliação em Tecnologia em Saúde, Rio de Janeiro, Brazil.
Paiva A; Faculdade de Medicina / Instituto de Medicina Tropical de São Paulo, Universidade de São Paulo, São Paulo, Brazil.; Universidade Federal de Alagoas, Hospital Universitário Prof. Alberto Antunes, Brazil.
Casseb J; Faculdade de Medicina / Instituto de Medicina Tropical de São Paulo, Universidade de São Paulo, São Paulo, Brazil.
Oliveira ACP; Instituto de Infectologia Emílio Ribas, Universidade de São Paulo, São Paulo, Brazil.
Taylor GP; Section of Virology, Department of Infectious Disease, Imperial College London, London, United Kingdom.; National Centre for Human Retrovirology, St. Mary's Hospital, Imperial College Healthcare NHS Trust, London, United Kingdom.
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Źródło:
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PLoS neglected tropical diseases [PLoS Negl Trop Dis] 2020 Oct 16; Vol. 14 (10), pp. e0008761. Date of Electronic Publication: 2020 Oct 16 (Print Publication: 2020).
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Typ publikacji:
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Journal Article; Observational Study; Research Support, Non-U.S. Gov't
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Język:
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English
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Imprint Name(s):
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Original Publication: San Francisco, CA : Public Library of Science
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MeSH Terms:
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Quality of Life*
Carrier State/*psychology
HTLV-I Infections/*psychology
Neglected Diseases/*psychology
Paraparesis, Tropical Spastic/*psychology
Adolescent ; Adult ; Aged ; Aged, 80 and over ; Brazil/epidemiology ; Carrier State/epidemiology ; Carrier State/virology ; Cross-Sectional Studies ; Female ; HTLV-I Infections/epidemiology ; HTLV-I Infections/virology ; Health Status ; Human T-lymphotropic virus 1/genetics ; Human T-lymphotropic virus 1/physiology ; Humans ; Male ; Middle Aged ; Neglected Diseases/epidemiology ; Neglected Diseases/virology ; Paraparesis, Tropical Spastic/epidemiology ; Paraparesis, Tropical Spastic/virology ; United Kingdom/epidemiology ; Young Adult
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Grant Information:
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United Kingdom DH_ Department of Health
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Entry Date(s):
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Date Created: 20201016 Date Completed: 20210208 Latest Revision: 20231104
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Update Code:
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20240105
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PubMed Central ID:
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PMC7592910
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DOI:
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10.1371/journal.pntd.0008761
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PMID:
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33064742
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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.
Competing Interests: The authors have declared that no competing interests exist.
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