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Patient and Provider-Reported Symptoms in the Post-cART Era

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Abstract

Prior research has consistently demonstrated that providers often under recognize symptoms. However, this research was limited by the different ways in which patients and providers were asked about the symptoms patients experience. We sought to (1) describe the prevalence of patient-reported symptoms in the post-cART era; (2) identify those patient-reported symptoms which are most strongly associated with health-related quality of life (HRQoL), hospitalization and mortality; and (3) determine whether primary providers recognize symptoms associated with HRQoL, hospitalization and mortality. We conducted a secondary analysis using baseline survey data from the Veterans Aging Cohort Study and determined which patient-reported symptoms correlated with clinical outcomes using regression analyses. Kappa scores were then calculated. HIV-infected patients suffer from a high burden of symptoms in the post-cART era. Nine out of 20 symptoms correlated with clinical outcomes. Providers universally under recognized symptoms and demonstrated poor agreement beyond chance when patient-report was used as the gold standard.

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References

  1. Lohse N, Hansen AB, Pedersen G, Kronborg G, Gerstoft J, Sorensen HT, et al. Survival of persons with and without HIV infection in Denmark, 1995–2005. Ann Intern Med. 2007;146(2):87–95.

    PubMed  Google Scholar 

  2. Currier JS, Havlir DV. Complications of HIV disease and antiretroviral therapy. Top HIV Med. 2009;17(2):57–67.

    PubMed  Google Scholar 

  3. Palella FJ Jr, Baker RK, Moorman AC, Chmiel JS, Wood KC, Brooks JT, et al. Mortality in the highly active antiretroviral therapy era: changing causes of death and disease in the HIV outpatient study. J Acquir Immune Defic Syndr. 2006;43(1):27–34.

    Article  PubMed  CAS  Google Scholar 

  4. Braithwaite RS, Justice AC, Chang CC, Fusco JS, Raffanti SR, Wong JB, et al. Estimating the proportion of patients infected with HIV who will die of comorbid diseases. Am J Med. 2005;118(8):890–8.

    Article  PubMed  Google Scholar 

  5. Selwyn PA. Palliative care for patient with human immunodeficiency virus/acquired immune deficiency syndrome. J Palliat Med. 2005;8(6):1248–68.

    Article  PubMed  Google Scholar 

  6. Mathews WC, McCutchan JA, Asch S, Turner BJ, Gifford AL, Kuromiya K, et al. National estimates of HIV-related symptom prevalence from the HIV Cost, Services Utilization Study. Med Care. 2000;38(7):750–62.

    Article  PubMed  CAS  Google Scholar 

  7. Willard S, Holzemer WL, Wantland DJ, Cuca YP, Kirksey KM, Portillo CJ, et al. Does “asymptomatic” mean without symptoms for those living with HIV infection? AIDS Care. 2009;21(3):322–8.

    Article  PubMed  Google Scholar 

  8. Harding R, Molloy T, Easterbrook P, Frame K, Higginson IJ. Is antiretroviral therapy associated with symptom prevalence and burden? Int J STD AIDS. 2006;17(6):400–5.

    Article  PubMed  Google Scholar 

  9. Silverberg MJ, Gore ME, French AL, Gandhi M, Glesby MJ, Kovacs A, et al. Prevalence of clinical symptoms associated with highly active antiretroviral therapy in the Women’s Interagency HIV Study. Clin Infect Dis. 2004;39(5):717–24.

    Article  PubMed  Google Scholar 

  10. Dodd M, Janson S, Facione N, Faucett J, Froelicher ES, Humphreys J, et al. Advancing the science of symptom management. J Adv Nurs. 2001;33(5):668–76.

    Article  PubMed  CAS  Google Scholar 

  11. Duran S, Spire B, Raffi F, Walter V, Bouhour D, Journot V, et al. Self-reported symptoms after initiation of a protease inhibitor in HIV-infected patients, their impact on adherence to HAART. HIV Clin Trials. 2001;2(1):38–45.

    Article  PubMed  CAS  Google Scholar 

  12. Johnson MO, Charlebois E, Morin SF, Catz SL, Goldstein RB, Remien RH, et al. Perceived adverse effects of antiretroviral therapy. J Pain Symptom Manage. 2005;29(2):193–205.

    Article  PubMed  Google Scholar 

  13. Ammassari A, Murri R, Pezzotti P, Trotta MP, Ravasio L, De Longis P, et al. Self-reported symptoms and medication side effects influence adherence to highly active antiretroviral therapy in persons with HIV infection. J Acquir Immune Defic Syndr. 2001;28(5):445–9.

    PubMed  CAS  Google Scholar 

  14. Vincent E, Bouhnik AD, Carrieri MP, Rey D, Dujardin P, Granier F, et al. Impact of HAART-related side effects on unsafe sexual behaviours in HIV-infected injecting drug users: 7-year follow up. AIDS. 2004;18(9):1321–5.

    Article  PubMed  Google Scholar 

  15. Lorenz KA, Cunningham WE, Spritzer KL, Hays RD. Changes in symptoms and health-related quality of life in a nationally representative sample of adults in treatment for HIV. Qual Life Res. 2006;15(6):951–8.

    Article  PubMed  Google Scholar 

  16. Mrus JM, Leonard AC, Yi MS, Sherman SN, Fultz SL, Justice AC, et al. Health-related quality of life in veterans and nonveterans with HIV/AIDS. J Gen Intern Med. 2006;21(Suppl 5):S39–47.

    Article  PubMed  Google Scholar 

  17. Burgoyne RW, Rourke SB, Behrens DM, Salit IE. Long-term quality-of-life outcomes among adults living with HIV in the HAART era: the interplay of changes in clinical factors and symptom profile. AIDS Behav. 2004;8(2):151–63.

    Article  PubMed  Google Scholar 

  18. Mannheimer SB, Wold N, Gardner EM, Telzak EE, Huppler Hullsiek K, Chesney M, et al. Mild-to-moderate symptoms during the first year of antiretroviral therapy worsen quality of life in HIV-infected individuals. Clin Infect Dis. 2008;46(6):941–5.

    Article  PubMed  Google Scholar 

  19. Carrieri P, Spire B, Duran S, Katlama C, Peyramond D, Francois C, et al. Health-related quality of life after 1 year of highly active antiretroviral therapy. J Acquir Immune Defic Syndr. 2003;32(1):38–47.

    Article  PubMed  Google Scholar 

  20. Burgoyne R, Collins E, Wagner C, Abbey S, Halman M, Nur M, et al. The relationship between lipodystrophy-associated body changes, measures of quality of life, mental health for HIV-positive adults. Qual Life Res. 2005;14(4):981–90.

    Article  PubMed  Google Scholar 

  21. Justice AC, Chang CH, Rabeneck L, Zackin R. Clinical importance of provider-reported HIV symptoms compared with patient-report. Med Care. 2001;39(4):397–408.

    Article  PubMed  CAS  Google Scholar 

  22. Karus D, Raveis VH, Alexander C, Hanna B, Selwyn P, Marconi K, et al. Patient reports of symptoms, their treatment at three palliative care projects servicing individuals with HIV/AIDS. J Pain Symptom Manage. 2005;30(5):408–17.

    Article  PubMed  Google Scholar 

  23. Smola S, Justice AC, Wagner J, Rabeneck L, Weissman S, Rodriguez-Barradas M. Veterans aging cohort three-site study (VACS 3): overview and description. J Clin Epidemiol. 2001;54(Suppl 1):S61–76.

    Article  PubMed  Google Scholar 

  24. Justice AC, Holmes W, Gifford AL, Rabeneck L, Zackin R, Sinclair G, et al. Development and validation of a self-completed HIV symptom index. J Clin Epidemiol. 2001;54(Suppl 1):S77–90.

    Article  PubMed  Google Scholar 

  25. Ware JE. SF-36 Health Survey Update. Cited 2010 February 28; Available from: http://www.sf-36.org/tools/sf36.shtml.

  26. Ware J Jr, Kosinski M, Keller SD. A 12-Item Short-Form Health Survey: construction of scales, preliminary tests of reliability, validity. Med Care. 1996;34(3):220–33.

    Article  PubMed  Google Scholar 

  27. Fisher SG, Weber L, Goldberg J, Davis F. Mortality ascertainment in the veteran population: alternatives to the National Death Index. Am J Epidemiol. 1995;141(3):242–50.

    PubMed  CAS  Google Scholar 

  28. Fleiss JLB, Paik M. Statistical methods for rates and proportions. Hoboken: Wiley; 2003.

    Book  Google Scholar 

  29. Harding R, Molloy T. Positive futures? The impact of HIV infection on achieving health, wealth and future planning. AIDS Care. 2008;20(5):565–70.

    Article  PubMed  Google Scholar 

  30. Solano JP, Gomes B, Higginson IJ. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manage. 2006;31(1):58–69.

    Article  PubMed  Google Scholar 

  31. WHO. Palliative care. WHO; 2002.

  32. Samsa G, Edelman D, Rothman ML, Williams GR, Lipscomb J, Matchar D. Determining clinically important differences in health status measures: a general approach with illustration to the Health Utilities Index Mark II. Pharmacoeconomics. 1999;15(2):141–55.

    Article  PubMed  CAS  Google Scholar 

  33. Kilbourne AM, Justice AC, Rollman BL, McGinnis KA, Rabeneck L, Weissman S, et al. Clinical importance of HIV, depressive symptoms among veterans with HIV infection. J Gen Intern Med. 2002;17(7):512–20.

    Article  PubMed  Google Scholar 

  34. Hill A, Balkin A. Risk factors for gastrointestinal adverse events in HIV treated and untreated patients. AIDS Rev. 2009;11(1):30–8.

    PubMed  Google Scholar 

  35. Luther J, Glesby MJ. Dermatologic adverse effects of antiretroviral therapy: recognition and management. Am J Clin Dermatol. 2007;8(4):221–33.

    Article  PubMed  Google Scholar 

  36. Walmsley S, Bernstein B, King M, Arribas J, Beall G, Ruane P, et al. Lopinavir-ritonavir versus nelfinavir for the initial treatment of HIV infection. N Engl J Med. 2002;346(26):2039–46.

    Article  PubMed  CAS  Google Scholar 

  37. Nader CM, Tsevat J, Justice AC, Mrus JM, Levin F, Kozal MJ, et al. Development of an electronic medical record-based clinical decision support tool to improve HIV symptom management. AIDS Patient Care STDS. 2009;23(7):521–9.

    Article  PubMed  Google Scholar 

  38. Asch SM, Fremont AM, Turner BJ, Gifford A, McCutchan JA, Mathews WM, et al. Symptom-based framework for assessing quality of HIV care. Int J Qual Health Care. 2004;16(1):41–50.

    Article  PubMed  Google Scholar 

  39. IOM. Adverse drug event reporting: the roles of consumers and health-care professionals, workshop summary. Washington, DC: The National Academy Press; 2007.

  40. Kitahata MM, Gange SJ, Abraham AG, Merriman B, Saag MS, Justice AC, et al. Effect of early versus deferred antiretroviral therapy for HIV on survival. N Engl J Med. 2009;360(18):1815–26.

    Article  PubMed  CAS  Google Scholar 

  41. Sterne JA, May M, Costagliola D, de Wolf F, Phillips AN, Harris R, et al. Timing of initiation of antiretroviral therapy in AIDS-free HIV-1-infected patients: a collaborative analysis of 18 HIV cohort studies. Lancet. 2009;373(9672):1352–63.

    Article  PubMed  Google Scholar 

  42. Zingmond DS, Kilbourne AM, Justice AC, Wenger NS, Rodriguez-Barradas M, Rabeneck L, et al. Differences in symptom expression in older HIV-positive patients: The Veterans Aging Cohort 3 Site Study and HIV Cost and Service Utilization Study experience. J Acquir Immune Defic Syndr. 2003;33(Suppl 2):S84–92.

    PubMed  Google Scholar 

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Acknowledgements

We would like to gratefully acknowledge Joseph Goulet for sharing his expertise and input in preparing this manuscript. This work was funded by The Veterans Health Administration, Robert Wood Johnson Clinical Scholars Program, Robert Wood Johnson Generalist Faculty Scholars Program, National Institute on Alcohol Abuse and Alcoholism (U10 AA 13566) and VHA Public Health Strategic Health Core Group, and National Institute on Aging.

Conflicts of Interest Statement

No known conflicts of interest to report.

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Correspondence to E. J. Edelman.

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This work was presented as a poster at the National Meeting of the Society of General Internal Medicine, Minneapolis, MN on April 30th, 2010.

Disclaimer: The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs.

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Edelman, E.J., Gordon, K. & Justice, A.C. Patient and Provider-Reported Symptoms in the Post-cART Era. AIDS Behav 15, 853–861 (2011). https://doi.org/10.1007/s10461-010-9706-z

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