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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

Rosadas, Carolina ; Assone, Tatiane ; Yamashita, Marina ; Adonis, Adine ; Puccioni-Sohler, Marzia ; Santos, Marisa ; Paiva, Arthur ; Casseb, Jorge ; Oliveira, Augusto C P ; Taylor, Graham P Scarpino, Samuel V.

PLoS neglected tropical diseases, 2020-10, Vol.14 (10), p.e0008761-e0008761 [Periódico revisado por pares]

United States: Public Library of Science

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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
Autor: Rosadas, Carolina ; Assone, Tatiane ; Yamashita, Marina ; Adonis, Adine ; Puccioni-Sohler, Marzia ; Santos, Marisa ; Paiva, Arthur ; Casseb, Jorge ; Oliveira, Augusto C P ; Taylor, Graham P
Scarpino, Samuel V.
Assuntos: Adolescent ; Adult ; Aged ; Aged, 80 and over ; Asymptomatic ; Blood & organ donations ; Brazil - epidemiology ; Carrier State - epidemiology ; Carrier State - psychology ; Carrier State - virology ; Central nervous system diseases ; Complications and side effects ; Cost analysis ; Cross-Sectional Studies ; Disease prevention ; Diseases ; Epidemiology ; Female ; Health aspects ; Health policy ; Health Status ; Hereditary spastic paraplegia ; Hospitals ; HTLV-I infections ; HTLV-I Infections - epidemiology ; HTLV-I Infections - psychology ; HTLV-I Infections - virology ; Human T-lymphotropic virus 1 - genetics ; Human T-lymphotropic virus 1 - physiology ; Humans ; Infections ; Infectious diseases ; Leukemia ; Male ; Middle Aged ; Neglected Diseases - epidemiology ; Neglected Diseases - psychology ; Neglected Diseases - virology ; Neurological diseases ; Normal distribution ; Paraparesis, Tropical Spastic - epidemiology ; Paraparesis, Tropical Spastic - psychology ; Paraparesis, Tropical Spastic - virology ; Paraplegia ; Patient outcomes ; Patients ; Population ; Public health ; Quality ; Quality of Life ; Questionnaires ; Risk factors ; Sexually transmitted diseases ; Spastic paraparesis ; Spinal cord ; STD ; Surveys ; Transmission ; Tropical climate ; Tropical diseases ; Tropical spastic paraparesis ; United Kingdom - epidemiology ; Values ; Virology ; Wheelchairs ; Womens health ; Young Adult
É parte de: PLoS neglected tropical diseases, 2020-10, Vol.14 (10), p.e0008761-e0008761
Notas: new_version
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The authors have declared that no competing interests exist.
Descrição: 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. 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. 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. 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.
Editor: United States: Public Library of Science
Idioma: Inglês

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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

Rosadas, Carolina ; Assone, Tatiane ; Yamashita, Marina ; Adonis, Adine ; Puccioni-Sohler, Marzia ; Santos, Marisa ; Paiva, Arthur ; Casseb, Jorge ; Oliveira, Augusto C P ; Taylor, Graham P Scarpino, Samuel V.

United States: Public Library of Science

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