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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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Listed:
  • Carolina Rosadas
  • Tatiane Assone
  • Marina Yamashita
  • Adine Adonis
  • Marzia Puccioni-Sohler
  • Marisa Santos
  • Arthur Paiva
  • Jorge Casseb
  • Augusto C P Oliveira
  • Graham P Taylor

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.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.

Suggested Citation

  • Carolina Rosadas & Tatiane Assone & Marina Yamashita & Adine Adonis & Marzia Puccioni-Sohler & Marisa Santos & Arthur Paiva & Jorge Casseb & Augusto C P Oliveira & Graham P Taylor, 2020. "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," PLOS Neglected Tropical Diseases, Public Library of Science, vol. 14(10), pages 1-14, October.
    • Handle: RePEc:plo:pntd00:0008761
    DOI: 10.1371/journal.pntd.0008761
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