Multidimensional effects of HTLV-1 on well-being: depression, functional capacity, and quality of life

Authors

DOI:

https://doi.org/10.17267/2317-3394rpds.2026.e6441

Keywords:

Human T-Lymphotropic Virus 1, Quality of Life, Depression, HTLV-I Associated Myelopathy, Tropical Spastic Paraparesis, Functional Capacity, Public Health

Abstract

INTRODUCTION: Human T-cell lymphotropic virus 1 (HTLV-1) is associated with significant health challenges, including a high prevalence of depression and a reduced quality of life (QoL). We aimed to investigate associations between HTLV-1 infection status (uninfected, asymptomatic, or HAM/TSP), depression, and different QoL domains across the QoL.  METHODS: This cross-sectional study included 171 participants: 26 uninfected controls, 91 HTLV-1-infected asymptomatic individuals, and 54 individuals diagnosed with HAM/TSP. Depression and QoL were assessed using the Mini-International Neuropsychiatric Interview and the WHOQOL-BREF, respectively. Functional capacity was determined using the Expanded Disability Status Scale (EDSS) and Osame’s Motor Disability Score (OMDS). RESULTS: The overall prevalence of depression was 33.9%, varying significantly according to infection status (19.2% - uninfected individuals, 29.7% - asymptomatic HTLV-1, 48.1% - HAM/TSP). Multivariate analysis revealed that depression had a profoundly negative impact across all QoL domains, particularly the psychological health domain (average -3.58 - point reduction). Individuals with HAM/TSP reported the lowest QoL scores, while asymptomatic individuals also exhibited reduced scores in the physical health domain compared to uninfected controls. CONCLUSIONS: Our findings highlight the urgent need for comprehensive mental health and QoL interventions tailored to HTLV-1-infected populations. This study provides novel insights into the multidimensional effects of HTLV-1 on well-being, emphasizing the importance of addressing both physical and psychological dimensions to improve outcomes for this neglected tropical disease.

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References

Ahmed, H. I., Mohamed, E. E., & Aly, S. M. (2014). Effect of mobility on the quality of life among older adults in geriatric home at Makkah Al-Mukarramah [Efecto de la movilidad en la calidad de vida de los adultos mayores en el hogar geriátrico de La Meca Al-Mukarramah]. Advances in Life Science and Technology, 17, 39–50. https://iiste.org/Journals/index.php/ALST/article/view/10825

Amorim, P. (2000). Mini International Neuropsychiatric Interview (MINI): Validação de entrevista breve para diagnóstico de transtornos mentais [Entrevista Neuropsiquiátrica Internacional Mini (MINI): Validación de una entrevista breve para el diagnóstico de trastornos mentales]. Revista Brasileira de Psiquiatria, 22(3), 106–115. https://doi.org/10.1590/S1516-44462000000300003

Araujo, A., Bangham, C. R. M., Casseb, J., Gotuzzo, E., Jacobson, S., Martin, F., Oliveira, A. P., Puccioni-Sohler, M., Taylor, G. P., & Yamano, Y. (2021). Management of HAM/TSP: Systematic review and consensus-based recommendations 2019 [Manejo de la HAM/TSP: Revisión sistemática y recomendaciones basadas en consenso]. Neurology: Clinical Practice, 11(1), 49–56. https://doi.org/10.1212/CPJ.0000000000000832

Boa-Sorte, N., Galvão-Castro, A. V., Borba, D., Lima, R. B. N. C., & Galvão-Castro, B. (2015). HAM/TSP and major depression: The role of age [HAM/TSP y depresión mayor: El papel de la edad]. The Brazilian Journal of Infectious Diseases, 19(3), 314–318. https://doi.org/10.1016/j.bjid.2014.12.003

Burrola-Mendez, Y., Kamalakannan, S., Rushton, P. W., Bouziane, S. A., Giesbrecht, E., Kirby, R. L., Gowran, R. J., Rusaw, D. F., Tasiemski, T., Goldberg, M., Tofani, M., Pedersen, J. P., & Pearlman, J. (2023). Wheelchair service provision education for healthcare professional students, healthcare personnel and educators across low- to high-resourced settings: a scoping review [Educación sobre la provisión de servicios de sillas de ruedas para estudiantes de ciencias de la salud, personal sanitario y educadores en contextos con recursos bajos a altos: una revisión de alcance]. Disability and Rehabilitation: Assistive Technology, 18(1), 67–88. https://doi.org/10.1080/17483107.2022.2037757

Carod-Artal, F. J. (2018). Infectious diseases causing autonomic dysfunction [Enfermedades infecciosas que causan disfunción autonómica]. Clinical Autonomic Research, 28(1), 67–81. https://doi.org/10.1007/s10286-017-0452-4

Castro-Costa, C. M., Araújo, A. Q. C., Barreto, M. M., Takayanagui, O. M., Sohler, M. P., Silva, E. L. M., Paula, S. M. B., Ishak, R., Ribas, J. G. R., Rovirosa, L. C., Carton, H., Gotuzzo, E., Hall, W. W., Montano, S., Murphy, E. L., Oger, J., Remondegui, C., & Taylor, G. P. (2006). Proposal for diagnostic criteria of tropical spastic paraparesis/HTLV-I-associated myelopathy (TSP/HAM) [Propuesta de criterios diagnósticos para la paraparesia espástica tropical/mielopatía asociada al HTLV-I (TSP/HAM)]. AIDS Research and Human Retroviruses, 22(10), 931–935. https://doi.org/10.1089/aid.2006.22.931

Coler-Reilly, A. L. G., Yagishita, N., Suzuki, H., Sato, T., Araya, N., Inoue, E., Takata, A., & Yamano, Y. (2016). Nation-wide epidemiological study of Japanese patients with rare viral myelopathy using novel registration system (HAM-net) [Estudio epidemiológico a nivel nacional de pacientes japoneses con mielopatía viral rara utilizando un novedoso sistema de registro (HAM-net)]. Orphanet Journal of Rare Diseases, 11(1), 69. https://doi.org/10.1186/s13023-016-0451-x

Coutinho, I. J., Galvão-Castro, B., Lima, J., Castello, C., Eiter, D., & Grassi, M. F. R. (2011). Impacto de la mielopatía/paraparesia espástica tropical asociada al HTLV (HAM/TSP) en las actividades de la vida diaria (AVD) en pacientes infectados por HTLV-1. Acta Fisiátrica, 18(1), 6-10. https://pesquisa.bvsalud.org/portal/resource/pt/lil-663364

Cruz, L. N., Fleck, M. P. A., & Polanczyk, C. A. (2010). Depression as a determinant of quality of life in patients with chronic disease: data from Brazil [La depresión como determinante de la calidad de vida en pacientes con enfermedad crónica: datos de Brasil]. Social Psychiatry and Psychiatric Epidemiology, 45(10), 953-961. https://doi.org/10.1007/s00127-009-0141-2

Davoudi, M., Boostani, R., & Manzari, Z. S. (2024). Lived experience of human T-cell leukemia virus type 1-associated myelopathy/tropical spastic paraparesis (HAM/TSP): a phenomenology study [Experiencia vivida de la mielopatía/paraparesia espástica tropical asociada al virus linfotrópico de células T humanas tipo 1 (HAM/TSP): un estudio fenomenológico]. Iranian Journal of Medical Sciences, 49(5), 2-9. https://pdfs.semanticscholar.org/e763/9f2aa24aaaa52db773306f61f6ede0f70a77.pdf

Fleck, M. P. A., Louzada, S., Xavier, M., Chachamovich, E., Vieira, G., Santos, L., & Pinzon, V. (2000). Aplicação da versão em português do instrumento abreviado de avaliação da qualidade de vida “WHOQOL-bref” [Aplicación de la versión portuguesa del instrumento abreviado de calidad de vida WHOQOL-bref]. Revista de Saúde Pública, 34(2), 178–183. https://doi.org/10.1590/S0034-89102000000200012

Galvão-Castro, A. V., Boa-Sorte, N., Kruschewsky, R. A., Grassi, M. F. R., & Galvão-Castro, B. (2012). Impact of depression on quality of life in people living with human T cell lymphotropic virus type 1 (HTLV-1) in Salvador, Brazil [Impacto de la depresión en la calidad de vida de las personas que viven con el virus linfotrópico de células T humanas tipo 1 (HTLV-1) en Salvador, Brasil]. Quality of Life Research, 21(9), 1545–1550. https://doi.org/10.1007/s11136-011-0066-6

Galvão-Castro, B., Grassi, M. F. R., Galvão-Castro, A. V., Nunes, A., Galvão-Barroso, A. K., Araújo, T. H. A., Rathsam-Pinheiro, R. H., Nunes, C. L. X., Ribeiro, A., Lírio, M., Gonçalves, N. L., Rangel, S. L., Dias, C. M. C. C., Ozores, D. P., Dubois-Mendes, S. M., Lima, I., Silva, A. L. P., Jesus, W. L. A., Santos, F. L. N., …, Soliani, M. L. C. (2022). Integrative and multidisciplinary care for people living with human T-cell lymphotropic virus in Bahia, Brazil: 20 years of experience [Atención integradora y multidisciplinaria para personas que viven con el virus linfotrópico de células T humanas en Bahía, Brasil: 20 años de experiencia]. Frontiers in Medicine, 9, 884127. https://doi.org/10.3389/fmed.2022.884127

Gascon, M. R., Haziot, M. E., Assone, T., Fonseca, L. A. M., Smid, J., Oliveira, A. C. P., & Casseb, J. (2019). Memory impairment: An intermediate clinical syndrome symptom in HTLV-1-infected patients? [Deterioro de la memoria: ¿un síntoma de síndrome clínico intermedio en pacientes infectados por HTLV-1?]. Arquivos de Neuro-Psiquiatria, 77(6), 429–435. https://doi.org/10.1590/0004-282X20190062

Haroen, H., Juniarti, N., Sari, C. W. M., Sari, S. P., Arovah, N. I., Pardosi, J. F., & Wibowo, D. A. (2025). Factors Associated with Caregiver Burden in Families of Patients with Palliative and Chronic Illness: A Cross-Sectional Study [Factores asociados con la carga del cuidador en familias de pacientes con enfermedades paliativas y crónicas: un estudio transversal]. Journal of Multidisciplinary Healthcare, 18, 4497-4510. https://doi.org/10.2147/JMDH.S533067

Henrique-Araújo, R., Quarantini, L. C., Caribé, A. C., Argolo, F. C., Jesus-Nunes, A. P., Morais-de-Jesus, M., Dantas-Duarte, A., Moreira, T. M., & Oliveira, I. R. (2019). Quality of life, risk behaviors and depression among carriers of hepatitis C virus and human T-cell lymphotropic virus type 1: A comparative study [Calidad de vida, conductas de riesgo y depresión entre portadores del virus de la hepatitis C y del virus linfotrópico de células T humanas tipo 1: un estudio comparativo]. The Brazilian Journal of Infectious Diseases, 23(4), 224–230. https://doi.org/10.1016/j.bjid.2019.06.013

Kurtzke, J. F. (1983). Rating neurologic impairment in multiple sclerosis: An expanded disability status scale (EDSS) [Evaluación del deterioro neurológico en la esclerosis múltiple: una escala ampliada de estado de discapacidad (EDSS)]. Neurology, 33(11), 1444–1452. https://doi.org/10.1212/WNL.33.11.1444

Lépine, J. P., & Briley, M. (2011). The increasing burden of depression [La creciente carga de la depresión]. Neuropsychiatric Disease and Treatment, 7(Suppl 1), 3–7. https://doi.org/10.2147/NDT.S19617

Marconi, C. S. C., Lins-Kusterer, L., Brites, C., & Gomes-Neto, M. (2021). Comparison of functioning and health-related quality of life among patients with HTLV-1, HIV, and HIV–HTLV-1 coinfection [Comparación del funcionamiento y de la calidad de vida relacionada con la salud entre pacientes con HTLV-1, VIH y coinfección VIH–HTLV-1]. Revista da Sociedade Brasileira de Medicina Tropical, 54, e0759-2020. https://doi.org/10.1590/0037-8682-0759-2020

Marcusso, R. M. N., Assone, T., Haziot, M. E., Smid, J., Folgosi, V. A., Rosadas, C., Casseb, J., Oliveira, A. C. P., & HTLV-1 Clinical Definition Working Group. (2024). HTLV-1-associated myelopathy (HAM) incidence in asymptomatic carriers and intermediate syndrome (IS) patients [Incidencia de la mielopatía asociada al HTLV-1 (HAM) en portadores asintomáticos y pacientes con síndrome intermedio (SI)]. Pathogens, 13(5), 403. https://doi.org/10.3390/pathogens13050403

Melo, A. P. S., Bonadiman, C. S. C., Andrade, F. M., Pinheiro, P. C., & Malta, D. C. (2023). Depression screening in a population-based study: Brazilian National Health Survey 2019 [Detección de la depresión en un estudio poblacional: Encuesta Nacional de Salud de Brasil 2019]. Ciência & Saúde Coletiva, 28(4), 1163–1174. https://doi.org/10.1590/1413-81232023284.14912022

Nakamura, T. (2023). HAM/TSP pathogenesis: The transmigration activity of HTLV-1-infected T cells into tissues [Patogénesis de la HAM/TSP: la actividad de transmigración de las células T infectadas por HTLV-1 hacia los tejidos]. Pathogens, 12(3), 492. https://doi.org/10.3390/pathogens12030492

Orletti, M. P. S., Assone, T., Sarnaglia, G. D., Martins, M. L., Rosadas, C., Casseb, J., Taylor, G., Ferreira-Filho, J. B., Pereira, F. E. L., & Miranda, A. E. (2021). Prevalence of infection by human T cell lymphotropic viruses (HTLV-1/2) in the adult population in Vitória, ES [Prevalencia de la infección por virus linfotrópicos de células T humanas (HTLV-1/2) en la población adulta de Vitória, ES]. The Brazilian Journal of Infectious Diseases, 25(5), 101631. https://doi.org/10.1016/j.bjid.2021.101631

Osame, M. (1990). Review of WHO Kagoshima meeting and diagnostic guidelines for HAM/TSP [Revisión de la reunión de la OMS en Kagoshima y de las directrices diagnósticas para HAM/TSP]. In: W. Blattner (Org.) Human Retrovirology: HTLV (191-197). Raven Press.

Paula, J. J., Romanelli, L. C., Faria, R. C. V., Proietti, A. B., Malloy-Diniz, L. F., Romano-Silva, M. A., Miranda, D. M., & Nicolato, R. (2021). Cognitive impairment in the HTLV-1 infection: A comparative study associated with functional performance [Deterioro cognitivo en la infección por HTLV-1: un estudio comparativo asociado con el desempeño functional]. Journal of NeuroVirology, 27(6), 849–856. https://doi.org/10.1007/s13365-020-00905-5

Rocha-Filho, P. A. S., & Goncalves, L. R. (2018). Depression and anxiety disorders among patients with human T-cell lymphotropic virus type-1: a cross-sectional study with a comparison group [Trastornos de depresión y ansiedad en pacientes con el virus linfotrópico de células T humanas tipo 1: un estudio transversal con grupo de comparación]. Revista da Sociedade Brasileira de Medicina Tropical, 51(3), 357–360. https://doi.org/10.1590/0037-8682-0365-2016

Rosadas, C., Assone, T., Yamashita, M., Adonis, A., Puccioni-Sohler, M., Santos, M., Paiva, A., Casseb, J., Oliveira, A. C. P., & Taylor, G. P. (2020). Health state utility values in people living with HTLV-1 and in patients with HAM/TSP: The impact of a neglected disease on quality of life [Valores de utilidad del estado de salud en personas que viven con HTLV-1 y en pacientes con HAM/TSP: el impacto de una enfermedad desatendida en la calidad de vida]. PLoS Neglected Tropical Diseases, 14(10), e0008761. https://doi.org/10.1371/journal.pntd.0008761

Santos, D. N., Sá, K. N., Queirós, F. C., Paixão, A. B., Santos, K. O. B., Andrade, R. C. P., Camatti, J. R., & Baptista, A. F. (2021). Pain, psychoaffective symptoms, and quality of life in human T cell lymphotropic virus type 1 (HTLV-1): a cross-sectional study [Dolor, síntomas psicoafectivos y calidad de vida en el virus linfotrópico de células T humanas tipo 1 (HTLV-1): un estudio transversal]. Journal of NeuroVirology, 27(6), 838–848. https://doi.org/10.1007/s13365-020-00914-4

Schmidt, F. R., Coutinho, E. S. F., Lima, M. A., Silva, M. T. T., Leite, A. C. C. B., Fonseca, I. O., & Araujo, A. Q. C. (2023). Performance of the National Institute of Infectious Diseases disability scale in HTLV-1-associated myelopathy/tropical spastic paraparesis [Desempeño de la escala de discapacidad del Instituto Nacional de Enfermedades Infecciosas en la mielopatía asociada al HTLV-1/paraparesia espástica tropical]. Journal of NeuroVirology, 29(5), 555–563. https://doi.org/10.1007/s13365-023-01154-y

Shublaq, M., Orsini, M., & Puccioni-Sohler, M. (2011). Implications of HAM/TSP functional incapacity in quality of life [Implicaciones de la incapacidad funcional por HAM/TSP en la calidad de vida]. Arquivos de Neuro-Psiquiatria, 69(2A), 208–211. https://doi.org/10.1590/S0004-282X2011000200013

Skojec, T. A., Davidson, T. M., & Kelechi, T. J. (2025). The relationship between uncertainty in illness and psychological adjustment to chronic illness [La relación entre la incertidumbre en la enfermedad y la adaptación psicológica a la enfermedad crónica]. Journal of Health Psychology, 30(4), 622–637. https://doi.org/10.1177/13591053241249861

Souza, L. S., Lins-Silva, D. H., Dorea-Bandeira, I., Barouh, J. L., Tolentino, A., Bandeira, I. D., & Quarantini, L. C. (2021). Prevalence and factors associated with depression and anxiety in people living with HTLV-1: A systematic review with meta-analysis and meta-regression [Prevalencia y factores asociados con la depresión y la ansiedad en personas que viven con HTLV-1: una revisión sistemática con metaanálisis y metarregresión]. General Hospital Psychiatry, 73, 54-63. https://doi.org/10.1016/j.genhosppsych.2021.08.012

Stahlman, S., Hargreaves, J. R., Sprague, L., Stangl, A. L., & Baral, S. D. (2017). Measuring sexual behavior stigma to inform effective HIV prevention and treatment programs for key populations [Medición del estigma relacionado con la conducta sexual para orientar programas efectivos de prevención y tratamiento del VIH en poblaciones clave]. JMIR Public Health and Surveillance, 3(2), e23. https://doi.org/10.2196/publichealth.7334

Tusa, N., Kautiainen, H., Elfving, P., Sinikallio, S., & Mäntyselkä, P. (2023). Depressive symptoms decrease health-related quality of life of patients with coronary artery disease and diabetes: a 12-month follow-up study in primary care [Los síntomas depresivos disminuyen la calidad de vida relacionada con la salud de los pacientes con enfermedad coronaria y diabetes: un estudio de seguimiento de 12 meses en atención primaria]. Scandinavian Journal of Primary Health Care, 41(3), 276–286. https://doi.org/10.1080/02813432.2023.2233995

World Health Organization. (1993). WHOQOL Study protocol [Protocolo de estudio WHOQOL]. WHO.

World Health Organization. (2001). International classification of functioning, disability and health: ICF [Clasificación internacional del funcionamiento de la discapacidad y de la salud: CIF]. Geneva: World Health Organization. https://iris.who.int/handle/10665/42407

World Health Organization. (29 de agosto de 2025). Trastorno depresivo (depresión). https://www.who.int/news-room/fact-sheets/detail/depression

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03/17/2026

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Reuter, L., Goulardins, J. B., Araújo, T. H. A., Grassi, M. F. R., Galvão-Castro, B., Galvão-Castro, A. V., & Boa-Sorte, N. (2026). Multidimensional effects of HTLV-1 on well-being: depression, functional capacity, and quality of life. Revista Psicologia, Diversidade E Saúde, 15, e6441. https://doi.org/10.17267/2317-3394rpds.2026.e6441