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
| العنوان: | 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 |
|---|---|
| المؤلفون: | Tatiane Assone, Marzia Puccioni-Sohler, Marina Yamashita, Graham P. Taylor, Marisa Santos, Jorge Casseb, Arthur Paiva, Adine Adonis, Carolina Rosadas, Augusto C. Penalva de Oliveira |
| المصدر: | PLoS Neglected Tropical Diseases, Vol 14, Iss 10, p e0008761 (2020) PLoS Neglected Tropical Diseases |
| بيانات النشر: | Public Library of Science (PLoS), 2020. |
| سنة النشر: | 2020 |
| مصطلحات موضوعية: | Male, 0301 basic medicine, Pediatrics, Cross-sectional study, Health Status, RC955-962, Disease, 0302 clinical medicine, Quality of life, immune system diseases, Arctic medicine. Tropical medicine, Epidemiology, 11 Medical and Health Sciences, Aged, 80 and over, Human T-lymphotropic virus 1, education.field_of_study, Neglected Diseases, virus diseases, Cost-effectiveness analysis, Middle Aged, Paraparesis, Tropical Spastic, Infectious Diseases, Carrier State, Female, Public aspects of medicine, RA1-1270, Brazil, Research Article, Adult, medicine.medical_specialty, Adolescent, 030231 tropical medicine, Population, Young Adult, 03 medical and health sciences, Tropical Medicine, medicine, Humans, education, Aged, business.industry, Public health, Public Health, Environmental and Occupational Health, 06 Biological Sciences, HTLV-I Infections, United Kingdom, Cross-Sectional Studies, 030104 developmental biology, Quality of Life, General Health Questionnaire, business |
| الوصف: | 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. Author summary HTLV-1 is a life-long persistent infection with no curative treatment available. It can cause a disabling neurological disease (HAM/TSP). Public policies targetting HTLV-1 prevention are important. Cost-utility studies are essential to identify which policies should be implemented. These studies have been hampered by the lack of information about health state utility values in patients with HAM/TSP and asymptomatic carriers (AC). These values represent the quality of life (QoL) and may vary from 0 (death) to 1 (best health state). We determined these values for AC (0.7121) and HAM/TSP patients (0.2991) using a self-administered questionnaire in patients from Brazil and UK. QoL in patients with HAM/TSP is lower than that reported for more than 130 other conditions with such data, including multiple sclerosis, neuropathic pain, Parkinson’s disease and HIV infection. For 12% of patients with HAM/TSP QoL was worse than death. Disease severity, rather than duration of disease, is associated with decreased QoL in HAM/TSP. HTLV-1 AC have impaired QoL compared to the general population in both countries. The data presented here will inform proper economic analysis in order to identify cost-effective policies. This is especially important for low- and middle-income countries where HTLV-1 prevalence is high and resources are limited. |
| تدمد: | 1935-2735 |
| الوصول الحر: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::3d15e784029c2d9e69c5ace59bd18854Test https://doi.org/10.1371/journal.pntd.0008761Test |
| حقوق: | OPEN |
| رقم الانضمام: | edsair.doi.dedup.....3d15e784029c2d9e69c5ace59bd18854 |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 19352735 |
|---|