IDEAS home Printed from https://ideas.repec.org/a/plo/pntd00/0008761.html
   My bibliography  Save this article

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

Author

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
    as

    Download full text from publisher

    File URL: https://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0008761
    Download Restriction: no
    File URL: https://journals.plos.org/plosntds/article/file?id=10.1371/journal.pntd.0008761&type=printable
    Download Restriction: no
    File URL: https://libkey.io/10.1371/journal.pntd.0008761?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    References listed on IDEAS

    as
    1. Patrick W. Sullivan & Julia F. Slejko & Mark J. Sculpher & Vahram Ghushchyan, 2011. "Catalogue of EQ-5D Scores for the United Kingdom," Medical Decision Making, , vol. 31(6), pages 800-804, November.
    2. Paul T E Cusack, 2020. "On Pain," Biomedical Journal of Scientific & Technical Research, Biomedical Research Network+, LLC, vol. 31(3), pages 24253-24254, October.
    3. Atanu Sengupta & Sanjoy De, 2020. "Review of Literature," India Studies in Business and Economics, in: Assessing Performance of Banks in India Fifty Years After Nationalization, chapter 0, pages 15-30, Springer.
    4. Marisa Santos & Monica A. C. T. Cintra & Andrea L. Monteiro & Braulio Santos & Fernando Gusmão-filho & Mônica Viegas Andrade & Kenya Noronha & Luciane N. Cruz & Suzi Camey & Bernardo Tura & Paul Kin, 2016. "Brazilian Valuation of EQ-5D-3L Health States," Medical Decision Making, , vol. 36(2), pages 253-263, February.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Wright, David Kenneth & Chan, Lisa S. & Fishman, Jennifer R. & Macdonald, Mary Ellen, 2021. "“Reflection and soul searching”: Negotiating nursing identity at the fault lines of palliative care and medical assistance in dying," Social Science & Medicine, Elsevier, vol. 289(C).
    2. José María López-Sanz & Azucena Penelas-Leguía & Pablo Gutiérrez-Rodríguez & Pedro Cuesta-Valiño, 2021. "Sustainable Development and Consumer Behavior in Rural Tourism—The Importance of Image and Loyalty for Host Communities," Sustainability, MDPI, vol. 13(9), pages 1-20, April.
    3. Daniel Niederer & Juliane Mueller, 2020. "Sustainability effects of motor control stabilisation exercises on pain and function in chronic nonspecific low back pain patients: A systematic review with meta-analysis and meta-regression," PLOS ONE, Public Library of Science, vol. 15(1), pages 1-21, January.
    4. Cristina Blasi Casagran & Colleen Boland & Elena Sánchez-Montijano & Eva Vilà Sanchez, 2021. "The Role of Emerging Predictive IT Tools in Effective Migration Governance," Politics and Governance, Cogitatio Press, vol. 9(4), pages 133-145.
    5. Sana Sadiq & Khadija Anasse & Najib Slimani, 2022. "The impact of mobile phones on high school students: connecting the research dots," Technium Social Sciences Journal, Technium Science, vol. 30(1), pages 252-270, April.
    6. Jitka Vseteckova, 2020. "Psychological Therapy for ICT Literate Older Adults in the Time of COVID-19 - Perceptions on the Acceptability of Online Versus Face to Face Versions of a Mindfulness for Later Life Group," Biomedical Journal of Scientific & Technical Research, Biomedical Research Network+, LLC, vol. 31(1), pages 23912-23916, October.
    7. Maria Maddalena Sirufo & Francesca De Pietro & Alessandra Catalogna & Lia Ginaldi & Massimo De Martinis, 2021. "The Microbiota-Bone-Allergy Interplay," IJERPH, MDPI, vol. 19(1), pages 1-14, December.
    8. Khalid Ahmed Al-Ansari & Ahmet Faruk Aysan, 2021. "More than ten years of Blockchain creation: How did we use the technology and which direction is the research heading? [Plus de dix ans de création Blockchain : Comment avons-nous utilisé la techno," Working Papers hal-03343048, HAL.
    9. Ling, Gabriel Hoh Teck & Suhud, Nur Amiera binti Md & Leng, Pau Chung & Yeo, Lee Bak & Cheng, Chin Tiong & Ahmad, Mohd Hamdan Haji & Matusin, AK Mohd Rafiq AK, 2021. "Factors Influencing Asia-Pacific Countries’ Success Level in Curbing COVID-19: A Review Using a Social–Ecological System (SES) Framework," SocArXiv b9f2w, Center for Open Science.
    10. Oleh Pasko & Mykola Hordiyenko & Fuli Chen & Yarmila Tkal & Yulia Abraham, 2021. "Mapping Global Research on International Financial Reporting Standards: A Scientometric Review," International Journal of Financial Research, International Journal of Financial Research, Sciedu Press, vol. 12(3), pages 116-134, May.
    11. Benedict E. DeDominicis, 2021. "Multinational Enterprises And Economic Nationalism: A Strategic Analysis Of Culture," Global Journal of Business Research, The Institute for Business and Finance Research, vol. 15(1), pages 19-66.
    12. Robert J. R. Elliott & Ingmar Schumacher & Cees Withagen, 2020. "Suggestions for a Covid-19 Post-Pandemic Research Agenda in Environmental Economics," Environmental & Resource Economics, Springer;European Association of Environmental and Resource Economists, vol. 76(4), pages 1187-1213, August.
    13. Rafał Krupiński, 2020. "Virtual Reality System and Scientific Visualisation for Smart Designing and Evaluating of Lighting," Energies, MDPI, vol. 13(20), pages 1-17, October.
    14. Zhang, Tianyu & Dong, Peiwu & Zeng, Yongchao & Ju, Yanbing, 2022. "Analyzing the diffusion of competitive smart wearable devices: An agent-based multi-dimensional relative agreement model," Journal of Business Research, Elsevier, vol. 139(C), pages 90-105.
    15. Werner Hölzl & Michael Böheim & Klaus S. Friesenbichler & Agnes Kügler & Thomas Leoni, 2021. "Staatliche Hilfsmaßnahmen für Unternehmen in der COVID-19-Krise. Eine begleitende Analyse operativer Aspekte und Unternehmenseinschätzungen," WIFO Studies, WIFO, number 66624, February.
    16. Thorbecke, Willem & Chen, Chen & Salike, Nimesh, 2021. "China’s exports in a protectionist world," Journal of Asian Economics, Elsevier, vol. 77(C).
    17. Vitor Hugo Ferreira & André da Costa Pinho & Dickson Silva de Souza & Bárbara Siqueira Rodrigues, 2021. "A New Clustering Approach for Automatic Oscillographic Records Segmentation," Energies, MDPI, vol. 14(20), pages 1-18, October.
    18. Maurizio Massaro & Francesca Dal Mas & Charbel Jose Chiappetta Jabbour & Carlo Bagnoli, 2020. "Crypto‐economy and new sustainable business models: Reflections and projections using a case study analysis," Corporate Social Responsibility and Environmental Management, John Wiley & Sons, vol. 27(5), pages 2150-2160, September.
    19. Óscar Chiva-Bartoll & Honorato Morente-Oria & Francisco Tomás González-Fernández & Pedro Jesús Ruiz-Montero, 2020. "Anxiety and Bodily Pain in Older Women Participants in a Physical Education Program. A Multiple Moderated Mediation Analysis," Sustainability, MDPI, vol. 12(10), pages 1-12, May.
    20. Ines A. Ferreira & Rachel M. Gisselquist & Finn Tarp, 2021. "On the impact of inequality on growth, human development, and governance," WIDER Working Paper Series wp-2021-34, World Institute for Development Economic Research (UNU-WIDER).

    More about this item

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:plo:pntd00:0008761. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: plosntds (email available below). General contact details of provider: https://journals.plos.org/plosntds/ .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.