Abstract
Purpose
Minimal research has been conducted to understand how fatigue influences quality of life (QOL) among adolescents living with HIV. The purpose of the study was to examine the relationship between fatigue, sleep disturbance, depression, anxiety, pain and QOL among adolescents receiving antiretroviral therapy (ART).
Methods
Using a cross-sectional survey design, we studied 134 South African adolescents receiving an ART at community clinics.
Results
Participants in general reported low levels of fatigue, insomnia, distress and pain and non-problematic levels of QOL. In the regression model, the linear combination of these variables explained 49% of the variance in QOL, a large effect size. Insomnia, anxiety, and depression significantly predicted QOL but surprisingly fatigue and pain did not.
Conclusions
Many members of the sample experienced non-clinical levels of sleep disturbance, fatigue and psychosocial distress. Similarly, QOL was within the normal range. These findings are surprising as the commonly held assumption is that adolescents living with HIV, especially those of poorer socio-economic backgrounds, would experience lower QOL than the norm. Even though scores on the instruments measuring these variables fell in the non-clinical range, they were still robustly predictive of poor QOL. Future research may address the relationship between self-reported adherence and QOL, possibly by examining the role of viral load as a mediating variable. Further research may also focus on non-adherent adolescents to understand the ways in which fatigue and other factors such as school functioning and social interaction influence QOL.
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References
Shisana, O., Rehle, T., Simbayi, L. C., Zuma, K., Jooste, S., Zungu, N., … Onoya, D. (2014). South African national HIV prevalence, incidence and behaviour survey, 2012. Cape Town: HSRC Press.
South African National AIDS Council Trust. (2015). South Africa global AIDS response progress report. Hatfield: South African National AIDS Council Trust.
Lifson, A. R., Grund, B., Gardner, E. M., Kaplan, R., Denning, E., Engen, N., … Emery, S. (2017). Improved quality of life with immediate versus deferred initiation of antiretroviral therapy in early asymptomatic HIV infection. AIDS, 31(7), 953–963. https://doi.org/10.1097/QAD.0000000000001417.
Torres, T. S., Harrison, L. J., La Rosa, A. M., Cardoso, S. W., Zheng, L., Ngongondo, M., … Hughes, M. D. (2018). Quality of life improvement in resource-limited settings after one year of second-line antiretroviral therapy use among adult men and women. AIDS. https://doi.org/10.1097/QAD.0000000000001738.
The United Nations Children’s Fund (UNICEF). (2013). Towards an AIDS-free generation: Children and AIDS, sixth stocktaking report, 2013. New York, The United Nations Children’s Fund (UNICEF).
Mason-Jones, A. J., Sinclair, D., Mathews, C., Kagee, A., Hillman, A., & Lombard, C. (2016). School-based interventions for preventing HIV, sexually transmitted infections, and pregnancy in adolescents. Cochrane Database of Systematic Reviews. https://doi.org/10.1002/14651858.CD006417.pub3.
Mbalinda, S. N., Kiwanuka, N., Kaye, D. K., & Eriksson, L. E. (2015). Reproductive health and lifestyle factors associated with health-related quality of life among perinatally HIV-infected adolescents in Uganda. Health and Quality of Life Outcomes, 13(1), 170. https://doi.org/10.1186/s12955-015-0366-6.
Enimil, A., Nugent, N., Amoah, C., Norman, B., Antwi, S., Ocran, J., … Barker, D. H. (2016). Quality of life among Ghanaian adolescents living with perinatally acquired HIV: A mixed methods study. AIDS Care, 28(4), 460–464. https://doi.org/10.1080/09540121.2015.1114997.
Tan, S. Y., Bradley-Klug, K., & Chenneville, T. (2017). Health-related quality of life and mental health indicators in adolescents with HIV compared to a community sample in the Southeastern US. AIDS Care, 29(2), 214–222. https://doi.org/10.1080/09540121.2016.1210078.
Voss, J. G., Portillo, C. J., Holzemer, W. L., & Dodd, M. J. (2007). Symptom cluster of fatigue and depression in HIV/AIDS. Journal of Prevention & Intervention in the Community, 33(1–2), 19–34. https://doi.org/10.1300/J005v33n01_03.
Shephard, R. J. (2001). Chronic fatigue syndrome: An update. Sports Medicine (Auckland, N.Z.), 31(3), 167–194.
Varni, J. W., Burwinkle, T. M., & Szer, I. S. (2004). The PedsQL multidimensional fatigue scale in pediatric rheumatology: Reliability and validity. The Journal of Rheumatology, 31(12), 2494–2500.
Gold, J. I., Mahrer, N. E., Yee, J., & Palermo, T. M. (2009). Pain, fatigue, and health-related quality of life in children and adolescents with chronic pain. The Clinical Journal of Pain, 25(5), 407–412. https://doi.org/10.1097/AJP.0b013e318192bfb1.
Nutini, M., Karczewski, M., & Capoor, J. (2009). Fatigue in children with neurologic impairments. Physical Medicine and Rehabilitation Clinics of North America, 20(2), 339–346. https://doi.org/10.1016/j.pmr.2008.12.004.
Banwell, B., Ghezzi, A., Bar-Or, A., Mikaeloff, Y., & Tardieu, M. (2007). Multiple sclerosis in children: Clinical diagnosis, therapeutic strategies, and future directions. The Lancet Neurology, 6(10), 887–902. https://doi.org/10.1016/S1474-4422(07)70242-9.
Webel, A. R., Perazzo, J., Decker, M., Horvat-Davey, C., Sattar, A., & Voss, J. G. (2016). Physical activity is associated with reduced fatigue in adults living with HIV/AIDS. Journal of Advanced Nursing, 72(12), 3104–3112. https://doi.org/10.1111/jan.13084.
Weis, J., Tomaszewski, K. A., Hammerlid, E., Ignacio Arraras, J., Conroy, T., Lanceley, A., … Bottomley, A. (2017). International psychometric validation of an EORTC quality of life module measuring cancer related fatigue (EORTC QLQ-FA12). JNCI: Journal of the National Cancer Institute. https://doi.org/10.1093/jnci/djw273.
Dersch, R., Sarnes, A. A., Maul, M., Hottenrott, T., Baumgartner, A., Rauer, S., & Stich, O. (2015). Quality of life, fatigue, depression and cognitive impairment in lyme neuroborreliosis. Journal of Neurology, 262(11), 2572–2577. https://doi.org/10.1007/s00415-015-7891-4.
Gay, C. M., Zygmunt, T., & Torres-Vázquez, J. (2011). Diverse functions for the semaphorin receptor PlexinD1 in development and disease. Developmental Biology, 349(1), 1–19. https://doi.org/10.1016/j.ydbio.2010.09.008.
Barroso, J., Harmon, J. L., Madison, J. L., & Pence, B. W. (2014). Intensity, chronicity, circumstances, and consequences of HIV-related fatigue. Clinical Nursing Research, 23(5), 514–528. https://doi.org/10.1177/1054773813492998.
Cha, K. M., Chung, Y. K., Lim, K. Y., Noh, J. S., Chun, M., Hyun, S. Y., … Kim, N. H. (2017). Depression and insomnia as mediators of the relationship between distress and quality of life in cancer patients. Journal of Affective Disorders, 217, 260–265. https://doi.org/10.1016/j.jad.2017.04.020.
Jain, A., Sharmab, R., Yadavc, N., Chaudhary, P., Jainc, G., & Maanju, M. (2017). Quality of life and its association with insomnia and clinical variables in type 2 diabetes. The Journal of the Egyptian Public Health Association, 92(1), 52–59.
Quigg, M., Gharai, S., Ruland, J., Schroeder, C., Hodges, M., Ingersoll, K. S., … Ritterband, L. M. (2016). Insomnia in epilepsy is associated with continuing seizures and worse quality of life. Epilepsy Research, 122, 91–96. https://doi.org/10.1016/j.eplepsyres.2016.02.014.
Lichstein, K. L., Means, M. K., Noe, S. L., & Aguillard, R. N. (1997). Fatigue and sleep disorders. Behaviour Research and Therapy, 35(8), 733–740.
Bengtson, A. M., Pence, B. W., O’Donnell, J., Thielman, N., Heine, A., Zinski, A., … Gaynes, B. (2015). Improvements in depression and changes in quality of life among HIV-infected adults. AIDS Care, 27(1), 47–53. https://doi.org/10.1080/09540121.2014.946386.
Parker, R., Stein, D. J., & Jelsma, J. (2014). Pain in people living with HIV/AIDS: A systematic review. Journal of the International AIDS Society, 17, 18719.
Robinson-Papp, J. (2016). Chronic pain and HIV: Musculoskeletal pain. In J. S. Merlin, P. A. Selwyn, G. J. Treisman & A. G. Giovanniello (Eds.), Chronic pain and HIV: A practical approach (1st ed., pp. 27–37). Chichester: Wiley. https://doi.org/10.1002/9781118777374.
da Silva, J. G., da Rocha Morgan, D. A., Melo, F. C. M., dos Santos, I. K., de Azevedo, K. P. M., de Medeiros, H. J., & Knackfuss, M. I. (2017). Level of pain and quality of life of people living with HIV/AIDS pain and quality of life in HIV/AIDS. AIDS Care, 29(8), 1041–1048. https://doi.org/10.1080/09540121.2016.1274013.
Johnson, A., Condon, K. D., Mapas-Dimaya, A. C., Schrager, J., Grossberg, R., Gonzalez, R., & O’Mahony, S. (2012). Report of an HIV clinic-based pain management program and utilization of health status and health service by HIV patients. Journal of Opioid Management, 8(1), 17–27.
Walker, K., McGown, A., Jantos, M., & Anson, J. (1997). Fatigue, depression, and quality of life in HIV-positive men. Journal of Psychosocial Nursing and Mental Health Services, 35(9), 32–40.
Ferrando, S., Evans, S., Goggin, K., Sewell, M., Fishman, B., & Rabkin, J. (1998). Fatigue in HIV illness: Relationship to depression, physical limitations, and disability. Psychosomatic Medicine, 60(6), 759–764.
Conley, S., Feder, S., & Redeker, N. S. (2015). The relationship between pain, fatigue, depression and functional performance in stable heart failure. Heart & Lung: The Journal of Acute and Critical Care, 44(2), 107–112. https://doi.org/10.1016/j.hrtlng.2014.07.008.
Daniel, L., Kazak, A. E., Li, Y., Hobbie, W., Ginsberg, J., Butler, E., & Schwartz, L. (2016). Relationship between sleep problems and psychological outcomes in adolescent and young adult cancer survivors and controls. Supportive Care in Cancer, 24(2), 539–546. https://doi.org/10.1007/s00520-015-2798-2.
Amtmann, D., Askew, R. L., Kim, J., Chung, H., Ehde, D. M., Bombardier, C. H., … Johnson, K. L. (2015). Pain affects depression through anxiety, fatigue, and sleep in multiple sclerosis. Rehabilitation Psychology, 60(1), 81–90. https://doi.org/10.1037/rep0000027.
Degroote, S., Vogelaers, D., & Vandijck, D. M. (2014). What determines health-related quality of life among people living with HIV: An updated review of the literature. Archives of Public Health, 72(1), 40. https://doi.org/10.1186/2049-3258-72-40.
Cooper, V., Clatworthy, J., Harding, R., & Whetham, J. (2017). Measuring quality of life among people living with HIV: A systematic review of reviews. Health and Quality of Life Outcomes, 15(1), 220. https://doi.org/10.1186/s12955-017-0778-6.
Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37(2), 126–139.
Chalder, T., Berelowitz, G., Pawlikowska, T., Watts, L., Wessely, S., Wright, D., & Wallace, E. P. (1993). Development of a fatigue scale. Journal of Psychosomatic Research, 37(2), 147–153.
Hewlett, S., Chalder, T., Choy, E., Cramp, F., Davis, B., Dures, E., … Kirwan, J. (2011). Fatigue in rheumatoid arthritis: Time for a conceptual model. Rheumatology, 50(6), 1004–1006. https://doi.org/10.1093/rheumatology/keq282.
Chalder, T., Deary, V., Husain, K., & Walwyn, R. (2010). Family-focused cognitive behaviour therapy versus psycho-education for chronic fatigue syndrome in 11- to 18-year-olds: A randomized controlled treatment trial. Psychological Medicine, 40(08), 1269–1279. https://doi.org/10.1017/S003329170999153X.
Crawley, E., & Sterne, J. A. C. (2009). Association between school absence and physical function in paediatric chronic fatigue syndrome/myalgic encephalopathy. Archives of Disease in Childhood, 94(10), 752–756. https://doi.org/10.1136/adc.2008.143537.
Lloyd, S., Chalder, T., & Rimes, K. A. (2012). Family-focused cognitive behaviour therapy versus psycho-education for adolescents with chronic fatigue syndrome: Long-term follow-up of an RCT. Behaviour Research and Therapy, 50(11), 719–725. https://doi.org/10.1016/j.brat.2012.08.005.
Soldatos, C. R., Dikeos, D. G., & Paparrigopoulos, T. J. (2000). Athens insomnia scale: Validation of an instrument based on ICD-10 criteria. Journal of Psychosomatic Research, 48(6), 555–560. https://doi.org/10.1016/S0022-3999(00)00095-7.
de Ross, R. L., Gullone, E., & Chorpita, B. F. (2002). The revised child anxiety and depression scale: A psychometric investigation with australian youth. Behaviour Change, 19(02), 90–101. https://doi.org/10.1375/bech.19.2.90.
Chorpita, B. F., Moffitt, C. E., & Gray, J. (2005). Psychometric properties of the revised child anxiety and depression scale in a clinical sample. Behaviour Research and Therapy, 43(3), 309–322. https://doi.org/10.1016/j.brat.2004.02.004.
Chorpita, B. F., Yim, L., Moffitt, C., Umemoto, L. A., & Francis, S. E. (2000). Assessment of symptoms of DSM-IV anxiety and depression in children: A revised child anxiety and depression scale. Behaviour Research and Therapy, 38(8), 835–855. https://doi.org/10.1016/S0005-7967(99)00130-8.
Van Oort, F. V. A., Greaves-Lord, K., Verhulst, F. C., Ormel, J., & Huizink, A. C. (2009). The developmental course of anxiety symptoms during adolescence: The TRAILS study. Journal of Child Psychology and Psychiatry, 50(10), 1209–1217. https://doi.org/10.1111/j.1469-7610.2009.02092.x.
Weiss, D., & Chorpita, B. F. (2011). Revised children’s anxiety and depression scale user’s guide. New York: Guilford Press.
Chorpita, B. F., Ebesutani, C., & Spence, S. H. (2015). Revised children’s anxiety and depression scale user’s guide. New York: Guilford Press.
McCormack, H. M., David, J. D., & Sheather, S. (1988). Clinical applications of visual analogue scales: A critical review. Psychological Medicine, 18(04), 1007. https://doi.org/10.1017/S0033291700009934.
Huang, I.-C., Thompson, L. A., Chi, Y.-Y., Knapp, C. A., Revicki, D. A., Seid, M., & Shenkman, E. A. (2009). The linkage between pediatric quality of life and health conditions: Establishing clinically meaningful cutoff scores for the PedsQL. Value in Health, 12(5), 773–781. https://doi.org/10.1111/j.1524-4733.2008.00487.x.
Cella, M., & Chalder, T. (2010). Measuring fatigue in clinical and community settings. Journal of Psychosomatic Research, 69(1), 17–22. https://doi.org/10.1016/j.jpsychores.2009.10.007.
Chung, K.-F., Kan, K. K.-K., & Yeung, W.-F. (2011). Assessing insomnia in adolescents: Comparison of insomnia severity index, Athens insomnia scale and sleep quality index. Sleep Medicine, 12(5), 463–470. https://doi.org/10.1016/j.sleep.2010.09.019.
Jensen, M. P., Chen, C., & Brugger, A. M. (2003). Interpretation of visual analog scale ratings and change scores: A reanalysis of two clinical trials of postoperative pain. The Journal of Pain: Official Journal of the American Pain Society, 4(7), 407–414.
Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd ed.). New York: Routledge.
Lam, P. K., Naar-King, S., & Wright, K. (2007). Social support and disclosure as predictors of mental health in HIV-positive youth. AIDS Patient Care and STDs, 21(1), 20–29. https://doi.org/10.1089/apc.2006.005.
Naar-King, S., Templin, T., Wright, K., Frey, M., Parsons, J. T., & Lam, P. (2006). Psychosocial factors and medication adherence in HIV-positive youth. AIDS Patient Care and STDs, 20(1), 44–47. https://doi.org/10.1089/apc.2006.20.44.
Pao, M., Lyon, M., D’Angelo, L. J., Schuman, W. B., Tipnis, T., & Mrazek, D. A. (2000). Psychiatric diagnoses in adolescents seropositive for the human immunodeficiency virus. Archives of Pediatrics & Adolescent Medicine, 154(3), 240–244.
Marcellin, F., Préau, M., Ravaux, I., Dellamonica, P., Spire, B., & Carrieri, M. P. (2007). Self-reported fatigue and depressive symptoms as main indicators of the quality of life (QOL) of patients living with HIV and hepatitis C: Implications for clinical management and future research. HIV Clinical Trials, 8(5), 320–327. https://doi.org/10.1310/hct0805-320.
Crane, H. M., Nance, R. M., Delaney, J. A. C., Fredericksen, R. J., Church, A., Simoni, J. M., … Kitahata, M. M. (2017). A comparison of adherence timeframes using missed dose items and their associations with viral load in routine clinical care: Is longer better? AIDS and Behavior, 21(2), 470–480. https://doi.org/10.1007/s10461-016-1566-8.
Kelley, C. F., Barbour, J. D., & Hecht, F. M. (2007). The relation between symptoms, viral load, and viral load set point in primary HIV infection. JAIDS Journal of Acquired Immune Deficiency Syndromes, 45(4), 445–448. https://doi.org/10.1097/QAI.0b013e318074ef6e.
Loades, M. E., Coetzee, B., Du Toit, S., & Kagee, A. (2018). ‘… But i’m still tired’: The experience of fatigue among South African adolescents receiving antiretroviral therapy. AIDS Care, 30(6), 746–750. https://doi.org/10.1080/09540121.2017.1394433.
Acknowledgements
We would like to acknowledge Stellenbosch Universities Sub-Committee A, as well as the University of Bath’s Faculty of Humanities and Social Sciences & Department of Psychology for funding this research. The funding was supported by Universiteit Stellenbosch (ZA) and University of Bath.
Funding
Dr. Loades is funded by the National Institute for Health Research (Doctoral Research Fellowship, DRF-2016-09-021). This report is independent research. The views expressed in this publication are those of the authors(s) and not necessarily those of the NHS, The National Institute for Health Research or the Department of Health. Dr. Kagee is funded by the National Research Foundation.
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Kagee, A., Coetzee, B., Toit, S.D. et al. Psychosocial predictors of quality of life among South Africa adolescents receiving antiretroviral therapy. Qual Life Res 28, 57–65 (2019). https://doi.org/10.1007/s11136-018-2010-5
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DOI: https://doi.org/10.1007/s11136-018-2010-5