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Palliative HIV Care: Opportunities for Biomedical and Behavioral Change

  • Behavioral-Bio-Medical Interface (JL Brown and RJ DiClemente, Section Editors)
  • Published:
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Abstract

Advances in treatment are contributing to substantial increases in life expectancy for individuals living with HIV, prompting a need to develop care models for the effective management of HIV as a chronic illness. With many individuals continuing to experience symptoms and complications that add to the disease burden across the spectrum of HIV disease, the discussion herein explores the complementary role that early palliative care can play in HIV primary care as a strategy for enhancing long-term quality of life. After first defining the concept of early palliative care, its scope in the context of current clinical realities in HIV treatment and implications for HIV care models is described. After reviewing the emerging extant research literature on HIV palliative care outcomes, a program description is offered as an illustration of how palliative care integration with HIV primary care can be achieved.

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References

Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance

  1. Sabin CA. Do people with HIV infection have a normal life expectancy in the era of combination antiretroviral therapy? BMC Med. 2013;11:251.

    Article  PubMed Central  PubMed  Google Scholar 

  2. Lohse N, Hansen AE, Pederson G, et al. Survival of persons with and without HIV infection in Denmark, 1995–2005. Ann Int Med. 2007;146:87–95.

    Article  PubMed  Google Scholar 

  3. Rodger AJ, Lodwick R, Schechter M, et al. Mortality in well controlled HIV in the continuous antiretroviral therapy arms of the SMART and ESPRIT trials compared with the general population. AIDS. 2013;27:973–9.

    Article  CAS  PubMed  Google Scholar 

  4. Grinsztejn B, Hosseinipour MC, Ribaudo HJ, et al. Effects of early versus delayed initiation of antiretroviral treatment on clinical outcomes of HIV-1 infection: results from the phase 3 HPTN 052 randomised controlled trial. Lancet Infect Dis. 2014;14:281–90.

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  5. Deeks SG, Lewin SR, Havlir DV. The end of AIDS: HIV infection as a chronic disease. Lancet. 2013;382:1525–33. This article offers a current overview of HIV as a chronic illness and underscores the importance of developing health care delivery systems that can address the chronic care needs of patients.

    Article  PubMed Central  PubMed  Google Scholar 

  6. Lohse N, Hansen AE, Gerstoft J, et al. Improved survival in HIV-infected persons: consequences and perspectives. J Antimicrob Chemother. 2007;60:461–3.

    Article  CAS  PubMed  Google Scholar 

  7. Gallant JE, Adimora AA, Carmichael JK, et al. Essential components of effective HIV care: a policy paper of the HIV Medicine Association of the Infectious Diseases Society of America and the Ryan White Medical Providers Coalition. Clin Infect Dis. 2011;53:1043–50.

    Article  PubMed Central  PubMed  Google Scholar 

  8. Cohen MS, Chen YQ, McCauley M, et al. Prevention of HIV-1 infection with early antiretroviral therapy. New Engl J Med. 2011;365:493–505.

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  9. Garnett GP, Becker S, Bertozzi S. Treatment as prevention: translating efficacy trial results to population effectiveness. Curr Opin HIV AIDS. 2012;7:157–63.

    Article  CAS  PubMed  Google Scholar 

  10. Forsyth AD, Valdiserri RO. Reaping the prevention benefits of highly active antiretroviral treatment: policy implications of HIV Prevention Trials Network 052. Curr Opin HIV AIDS. 2012;7:111–6.

    Article  CAS  PubMed  Google Scholar 

  11. McNairy ML, El-Sadr WM. The HIV care continuum: no partial credit given. AIDS. 2012;26:1735–8.

    Article  PubMed  Google Scholar 

  12. Gardner EM, McLees MP, Steiner JF, et al. The spectrum of engagement in HIV care and its relevance to test-and-treat strategies for prevention of HIV infection. Clin Infect Dis. 2011;52:793–800.

    Article  PubMed Central  PubMed  Google Scholar 

  13. CDC. Vital signs: HIV prevention through care and treatment—United States. MMWR. 2011;60:1618–23.

    Google Scholar 

  14. Hall HI, Frazier EL, Rhodes P, et al. Differences in human immunodeficiency virus care and treatment among subpopulations in the United States. JAMA Intern Med. 2013;173:1337–44.

    Article  PubMed  Google Scholar 

  15. Engel GL. The need for a new medical model: a challenge for biomedicine. Science. 1977;196:129–36.

    Article  CAS  PubMed  Google Scholar 

  16. Messer LC, Quinlivan EB, Parnell H, et al. Barriers and facilitators to testing, treatment entry, and engagement in care by HIV-positive women of color. AIDS Patient Care STDs. 2013;27:398–407.

    Article  PubMed Central  PubMed  Google Scholar 

  17. Christopoulos KA, Massey AD, Lopez AM, et al. “Taking a half day at a time:” patient perspectives and the HIV engagement in care continuum. AIDS Patient Care STDs. 2013;27:223–30.

    Article  PubMed Central  PubMed  Google Scholar 

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

    Article  PubMed  Google Scholar 

  19. Kutzen HS. Integration of palliative care into primary care for human immunodeficiency virus-infected patients. Am J Med Sci. 2004;328:37–47.

    Article  PubMed  Google Scholar 

  20. Simms V, Higginson IJ, Harding R. Integration of palliative care throughout HIV disease. Lancet Infect Dis. 2012;12:571–5. This review article provides a comprehensive summary and well-articulated rationale for early HIV palliative care.

    Article  PubMed  Google Scholar 

  21. World Health Organization. A community health approach to palliative care for HIV/AIDS and cancer patients in sub-Saharan Africa. Geneva: WHO; 2004.

    Google Scholar 

  22. UNAIDS. AIDS palliative care: technical update. Geneva: UNAIDS; 2000.

    Google Scholar 

  23. Radbruch L, de Lima L, Lohmann D, et al. The Prague Charter: urging governments to relieve suffering and ensure the right to palliative care. Palliat Med. 2013;27:101–2.

    Article  PubMed  Google Scholar 

  24. Selwyn PA, Forstein M. Overcoming the false dichotomy of curative vs palliative care for late-stage HIV/AIDS: “let me live the way I want to live, until I can’t.”. JAMA. 2003;290:806–14.

    Article  PubMed  Google Scholar 

  25. Harding R, Lampe FC, Norwood S, et al. Symptoms are highly prevalent among HIV outpatients and associated with poor adherence and unprotected sexual intercourse. Sex Transm Infect. 2010;86:520–4.

    Article  PubMed  Google Scholar 

  26. Merlin JS, Cen L, Praestgaard A, et al. Pain and physical and psychological symptoms in ambulatory HIV patients in the current treatment era. J Pain Symptom Manage. 2012;43:638–45.

    Article  PubMed Central  PubMed  Google Scholar 

  27. Simms VM, Higginson IJ, Harding R. What palliative care-related problems do patients experience at HIV diagnosis? A systematic review of the evidence. J Pain Symptom Manage. 2011;42:734–53.

    Article  PubMed  Google Scholar 

  28. Halman M, Carusone SC, Stranks S, et al. Complex care needs of patients with late-stage HIV disease: a retrospective study. AIDS Care. 2014;26:320–5.

    Article  PubMed Central  PubMed  Google Scholar 

  29. Deeks SG, Tracy R, Douek DC. Systemic effects of inflammation on health during chronic HIV infection. Immunity. 2013;39:633–45.

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  30. Bhatia R, Ryscavage P, Taiwo B. Accelerated aging and human immunodeficiency virus infection: emerging challenges of growing older in the era of successful antiretroviral therapy. J Neurovirol. 2014;18:247–55.

    Article  Google Scholar 

  31. Pellowski JA, Kalichman SC, Matthews KA, et al. A pandemic of the poor: social disadvantage and the U.S. HIV epidemic. Am Psychol. 2013;68:197–209.

    Article  PubMed Central  PubMed  Google Scholar 

  32. Bing EG, Burnham MA, Longshore D, et al. Psychiatric disorders and drug use among human immunodeficiency virus-infected adults in the United States. Arch Gen Psychiatry. 2001;58:721–8.

    Article  CAS  PubMed  Google Scholar 

  33. Gaynes BN, Pence BW, Eron JJ, et al. Prevalence and comorbidity of psychiatric diagnoses based on reference standard in an HIV + patient population. Psychosom Med. 2008;70:505–11.

    Article  PubMed Central  PubMed  Google Scholar 

  34. Fremont AM, Young AS, Chinman M, et al. Differences in HIV care between patients with and without severe mental illness. Psychiatr Serv. 2007;58:681–8.

    Article  PubMed  Google Scholar 

  35. Gonzales JS, Batchelder AW, Psaros C, et al. Depression and HIV/AIDS treatment nonadherence: a review and meta-analysis. J Acquir Immune Defic Syndr. 2011;58:181–7.

    Google Scholar 

  36. Merlin JS, Westfall AO, Raper JL, et al. Pain, mood, and substance abuse in HIV: implications for clinic visit utilization, antiretroviral therapy adherence, and virologic failure. J Acquir Immune Defic Syndr. 2012;61:164–70.

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  37. CDC. Vital signs: HIV testing and diagnosis among adults—United States, 2001–2009. MMWR. 2010;59:1550–5.

    Google Scholar 

  38. Antinori A, Coenen T, Costagiola D, et al. Late presentation of HIV infection: a consensus definition. HIV Med. 2011;12:61–4.

    Article  CAS  PubMed  Google Scholar 

  39. Waters L, Sabin CA. Late HIV presentation: epidemiology, clinical implications and management. Expert Rev Anti Infect Ther. 2011;9:877–89.

    Article  PubMed  Google Scholar 

  40. Vigouroux C, Bastard JP, Capeau J. Emerging clinical issues related to management of multiorgan comorbidities and polypharmacy. Curr Opin HIV AIDS. 2014;9:371–8.

    Article  PubMed  Google Scholar 

  41. Rodriguez-Penney AT, Iudicello JE, Riggs PK, et al. Co-morbidities in persons infected with HIV: increased burden with older age and negative effects on health-related quality of life. AIDS Patient Care STDs. 2013;27:5–16.

    Article  PubMed Central  PubMed  Google Scholar 

  42. Rueda S, Law S, Rourke SB. Psychosocial, mental health, and behavioral issues of aging with HIV. Curr Opin HIV AIDS. 2014;9:325–31.

    Article  PubMed  Google Scholar 

  43. Selwyn PA, Rivard M. Palliative care for AIDS: challenges and opportunities in the era of highly active anti-retroviral therapy. J Palliat Med. 2003;6:475–87.

    Article  PubMed  Google Scholar 

  44. Huang YT. Challenges and responses in providing palliative care for people living with HIV/AIDS. Int J Palliat Nurs. 2013;19:218–25.

    Article  PubMed  Google Scholar 

  45. Collins K, Harding R. Improving HIV management in sub-Saharan Africa: how much palliative care is needed? AIDS Care. 2007;19:1304–6.

    Article  CAS  PubMed  Google Scholar 

  46. McCormick E, Chai E, Meier DE. Integrating palliative care into primary care. Mt Sinai J Med. 2012;79:579–85.

    Article  PubMed  Google Scholar 

  47. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363:733–42.

    Article  CAS  PubMed  Google Scholar 

  48. Lowther K, Simms V, Selman L, et al. Treatment outcomes in palliative care: the TOPCare study. A mixed methods phase III randomised controlled trial to assess the effectiveness of a nurse-led palliative care intervention for HIV positive patients on antiretroviral therapy. BMC Infect Dis. 2012;12:288.

    Article  PubMed Central  PubMed  Google Scholar 

  49. Harding R, Karus D, Easterbrook P, et al. Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence. Sex Transm Infect. 2005;81:5–14.

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  50. Krakauer EL, Ngoc NTM, Green K, et al. Vietnam: integrating palliative care into HIV/AIDS and cancer care. J Pain Symptom Manage. 2007;33:578–83.

    Article  PubMed  Google Scholar 

  51. Green K, Tuan T, Hoang TV, et al. Integrating palliative care into HIV outpatient clinical settings: preliminary findings from an intervention study in Vietnam. J Pain Symptom Manage. 2010;40:31–4.

    Article  PubMed  Google Scholar 

  52. Wube M, Horne CJ, Stuer F. Building a palliative care program in Ethiopia: the impact on HIV and AIDS patients and their families. J Pain Symptom Manage. 2010;40:6–8.

    Article  PubMed  Google Scholar 

  53. Sunpath H, Edwin C, Chelin N, et al. Operationalizing early antiretroviral therapy in HIV-infected in-patients with opportunistic infections including tuberculosis. Int J Tuberc Lung Dis. 2012;16:917–23.

    Article  CAS  PubMed  Google Scholar 

  54. Harding R, Simms V, Alexander C, et al. Can palliative care integrated within HIV outpatient settings improve pain and symptom control in a low-income country? A prospective, longitudinal, controlled intervention evaluation. AIDS Care. 2013;25:795–804. This article reports on results from a study comparing outcomes in HIV outpatient programs where staff were trained in palliative care to those of a standard care program, showing that outcomes for reports of pain, physical health quality of life, and mental health quality of life all were superior in the palliative care program than in the standard care program.

    Article  PubMed  Google Scholar 

  55. Selwyn PA, Rivard M, Kappell D, et al. Palliative care for AIDS at a large urban teaching hospital: program description and preliminary outcomes. J Palliat Med. 2003;6:461–74.

    Article  PubMed  Google Scholar 

  56. Perry BA, Westfall AO, Molony E, et al. Characteristics of an ambulatory palliative care clinic for HIV-infected patients. J Palliat Med. 2013;16:934–7.

    Article  PubMed Central  PubMed  Google Scholar 

  57. Epstein RM, Street Jr RL. The values and value of patient-centered care. Ann Fam Med. 2011;9:100–3.

    Article  PubMed Central  PubMed  Google Scholar 

  58. Flickinger TE, Saha S, Moore RD, et al. Higher quality communication and relationships are associated with improved patient engagement in HIV care. J Acquir Immune Defic Syndr. 2013;63:362–6.

    Article  PubMed Central  PubMed  Google Scholar 

  59. Quinlivan EB, Messer LC, Adimora AA, et al. Experiences with HIV testing, entry, and engagement in care by HIV-infected women of color, and the need for autonomy, competency, and relatedness. AIDS Patient Care STDs. 2013;27:408–15.

    Article  PubMed Central  PubMed  Google Scholar 

  60. Kennedy S, Goggin K, Nollen N. Adherence to HIV medications: utility of the theory of self-determination. Cogn Ther Res. 2004;28:611–28.

    Article  Google Scholar 

  61. Lynam I, Catley D, Goggin K, et al. Autonomous regulation and locus of control as predictors of antiretroviral medication adherence. J Health Psychol. 2009;14:578–86.

    Article  PubMed Central  PubMed  Google Scholar 

  62. Merlin JS, Zinski A, Norton WE, et al. A conceptual framework for understanding chronic pain in patients with HIV. Pain Pract. 2014;14:207–16. This article presents a comprehensive biopsychosocial framework for conceptualizing chronic pain in HIV that has implications for early palliative care approaches.

    Article  PubMed  Google Scholar 

  63. Brown LS. Cultural competence: a new way of thinking about integration in therapy. J Psychother Integr. 2009;19:340–53.

    Article  Google Scholar 

  64. Stenswärd J, Foley KM, Ferris FD. The public health strategy for palliative care. J Pain Symptom Manage. 2007;33:486–93.

    Article  Google Scholar 

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Eugene W. Farber and Vincent C. Marconi declare that they have no conflict of interest.

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This article does not contain any studies with human or animal subjects performed by any of the authors.

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Correspondence to Eugene W. Farber.

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Farber, E.W., Marconi, V.C. Palliative HIV Care: Opportunities for Biomedical and Behavioral Change. Curr HIV/AIDS Rep 11, 404–412 (2014). https://doi.org/10.1007/s11904-014-0226-8

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