• We are sorry, but NCBI web applications do not support your browser and may not function properly. More information
Logo of straninfSexually Transmitted InfectionsCurrent TOCInstructions for authors
Sex Transm Infect. Feb 2005; 81(1): 5–14.
PMCID: PMC1763726

Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence

Abstract

Background: The need for palliative care in HIV management is underlined by the high prevalence of pain and symptoms, the toxicity, side effects, and virological failure associated with antiretroviral therapy, emergence of co-morbidities, continued high incidence of malignancies, late presentation of people with HIV disease, and the comparatively higher death rates among the infected individuals.

Methods: A systematic review was undertaken to appraise the effect of models of palliative care on patient outcomes. A detailed search strategy was devised and biomedical databases searched using specific terms relevant to models of palliative care. Data from papers that met the inclusion criteria were extracted into common tables, and evidence independently graded using well described hierarchy of evidence.

Results: 34 services met the inclusion criteria. Of these, 22 had been evaluated, and the evidence was graded as follows: grade 1 (n = 1); grade 2 (n = 2); grade 3 (n = 7); grade 4 (n = 1); qualitative (n = 6). Services were grouped as: home based care (n = 15); home palliative care/hospice at home (n = 7); hospice inpatient (n = 4); hospital inpatient palliative care (n = 4); specialist AIDS inpatient unit (n = 2); and hospital inpatient and outpatient care (n = 2). The evidence largely demonstrated that home palliative care and inpatient hospice care significantly improved patient outcomes in the domains of pain and symptom control, anxiety, insight, and spiritual wellbeing.

Conclusions: Although the appraisal of evidence found improvements across domains, the current body of evidence suffers from a lack of (quasi) experimental methods and standardised measures. The specialism of palliative care is responding to the clinical evidence that integration into earlier disease stages is necessary. Further studies are needed to both identify feasible methods and evaluate the apparent beneficial effect of palliative care on patient outcomes in the post-HAART era.

Full Text

The Full Text of this article is available as a PDF (104K).

Selected References

These references are in PubMed. This may not be the complete list of references from this article.
  • Fantoni M, Ricci F, Del Borgo C, Bevilacqua N, Izzi I, Damiano F, Marasca G. Symptom profile in terminally ill AIDS patients. AIDS Patient Care STDS. 1996 Jun;10(3):171–173. [PubMed]
  • Breitbart W, McDonald MV, Rosenfeld B, Passik SD, Hewitt D, Thaler H, Portenoy RK. Pain in ambulatory AIDS patients. I: Pain characteristics and medical correlates. Pain. 1996 Dec;68(2-3):315–321. [PubMed]
  • Larue F, Fontaine A, Colleau SM. Underestimation and undertreatment of pain in HIV disease: multicentre study. BMJ. 1997 Jan 4;314(7073):23–28. [PMC free article] [PubMed]
  • Sabin Caroline A. The changing clinical epidemiology of AIDS in the highly active antiretroviral therapy era. AIDS. 2002;16 (Suppl 4):S61–S68. [PubMed]
  • Tamalet Catherine, Fantini Jacques, Tourres Christian, Yahi Nouara. Resistance of HIV-1 to multiple antiretroviral drugs in France: a 6-year survey (1997-2002) based on an analysis of over 7000 genotypes. AIDS. 2003 Nov 7;17(16):2383–2388. [PubMed]
  • Dragsted Ulrik Bak, Gerstoft Jan, Pedersen Court, Peters Barry, Duran Adriana, Obel Niels, Castagna Antonella, Cahn Pedro, Clumeck Nathan, Bruun Johan N, et al. Randomized trial to evaluate indinavir/ritonavir versus saquinavir/ritonavir in human immunodeficiency virus type 1-infected patients: the MaxCmin1 Trial. J Infect Dis. 2003 Sep 1;188(5):635–642. [PubMed]
  • Heath KV, Montaner JSG, Bondy G, Singer J, O'Shaughnessy MV, Hogg RS. Emerging drug toxicities of highly active antiretroviral therapy for human immunodeficiency virus (HIV) infection. Curr Drug Targets. 2003 Jan;4(1):13–22. [PubMed]
  • Mary-Krause Murielle, Cotte Laurent, Simon Anne, Partisani Maria, Costagliola Dominique. Increased risk of myocardial infarction with duration of protease inhibitor therapy in HIV-infected men. AIDS. 2003 Nov 21;17(17):2479–2486. [PubMed]
  • Rabinstein Alejandro A. Stroke in HIV-infected patients: a clinical perspective. Cerebrovasc Dis. 2003;15(1-2):37–44. [PubMed]
  • Sperber Kirk, Shao Ling. Neurologic consequences of HIV infection in the era of HAART. AIDS Patient Care STDS. 2003 Oct;17(10):509–518. [PubMed]
  • Hicks Charles, Currier Judith, Sax Paul, Sherer Renslow, Wanke Christine. Current management challenges in HIV: tolerability of antiretrovirals and metabolic complications. AIDS Patient Care STDS. 2003 May;17(5):221–233. [PubMed]
  • Matheny SC. Clinical dilemmas in palliative care for HIV infection. J R Soc Med. 2001 Sep;94(9):449–451. [PMC free article] [PubMed]
  • Yegüez José F, Martinez Sergio A, Sands Dana R, Sands Laurence R, Hellinger Michael D. Colorectal malignancies in HIV-positive patients. Am Surg. 2003 Nov;69(11):981–987. [PubMed]
  • Powles T, Nelson M, Bower M. HIV-related lung cancer -- a growing concern? Int J STD AIDS. 2003 Oct;14(10):647–651. [PubMed]
  • Easterbrook P, Meadway J. The changing epidemiology of HIV infection: new challenges for HIV palliative care. J R Soc Med. 2001 Sep;94(9):442–448. [PMC free article] [PubMed]
  • Petticrew Mark. Why certain systematic reviews reach uncertain conclusions. BMJ. 2003 Apr 5;326(7392):756–758. [PMC free article] [PubMed]
  • Higginson IJ, McCarthy M. Validity of the support team assessment schedule: do staffs' ratings reflect those made by patients or their families? Palliat Med. 1993;7(3):219–228. [PubMed]
  • Nickel JT, Salsberry PJ, Caswell RJ, Keller MD, Long T, O'Connell M. Quality of life in nurse case management of persons with AIDS receiving home care. Res Nurs Health. 1996 Apr;19(2):91–99. [PubMed]
  • Vincent I, D'Hérouville D, Moulin P, Bugler C, Fraval J, Mallet D, Salamagne MH, Vildé JL, Jodelet D, Leport C. Modalities of palliative care in hospitalized patients with advanced AIDS. AIDS Care. 2000 Apr;12(2):211–219. [PubMed]
  • Butters E, Higginson I, George R, McCarthy M. Palliative care for people with HIV/AIDS: views of patients, carers and providers. AIDS Care. 1993;5(1):105–116. [PubMed]
  • Koffman J, Higginson I, Naysmith A. Hospice at home--a new service for patients with advanced HIV/AIDS: a pilot evaluation of referrals and outcomes. Br J Gen Pract. 1996 Sep;46(410):539–540. [PMC free article] [PubMed]
  • Butters E, Higginson I, George R, Smits A, McCarthy M. Assessing the symptoms, anxiety and practical needs of HIV/AIDS patients receiving palliative care. Qual Life Res. 1992 Feb;1(1):47–51. [PubMed]
  • Gibbs LM, Ellershaw JE, Williams MD. Caring for patients with HIV disease: the experience of a generic hospice. AIDS Care. 1997 Oct;9(5):601–607. [PubMed]
  • Butters E, Higginson I. Two HIV/AIDS community support teams: patient characteristics, problems at referral and during the last 6 weeks of life. AIDS Care. 1995;7(5):593–603. [PubMed]
  • Kimball LR, McCormick WC. The pharmacologic management of pain and discomfort in persons with AIDS near the end of life: use of opioid analgesia in the hospice setting. J Pain Symptom Manage. 1996 Feb;11(2):88–94. [PubMed]
  • Lucas C, Glare PA, Sykes JV. Contribution of a liaison clinical pharmacist to an inpatient palliative care unit. Palliat Med. 1997 May;11(3):209–216. [PubMed]
  • Foley ME, Fahs MC, Eisenhandler J, Hyer K. Satisfaction with home healthcare services for clients with HIV: preliminary findings. J Assoc Nurses AIDS Care. 1995 Sep-Oct;6(5):20–25. [PubMed]
  • Uys LR. Evaluation of the Integrated Community-Based Home Care model. Curationis. 2001 Aug;24(3):75–82. [PubMed]
  • Uys LR. The practice of community caregivers in a home-based HIV/AIDS project in South Africa. J Clin Nurs. 2002 Jan;11(1):99–108. [PubMed]
  • Moons M, Kerkstra A, Biewenga T. Specialized home care for patients with AIDS: an experiment in Rotterdam, The Netherlands. J Adv Nurs. 1994 Jun;19(6):1132–1140. [PubMed]
  • Bunch EH. AIDS in Norway: a post hoc evaluation of an AIDS home care project. J Clin Nurs. 1998 Mar;7(2):183–187. [PubMed]
  • McCann K. The work of a specialist AIDS home support team: the views and experiences of patients using the service. J Adv Nurs. 1991 Jul;16(7):832–836. [PubMed]
  • Rinck GC, van den Bos GA, Kleijnen J, de Haes HJ, Schadé E, Veenhof CH. Methodologic issues in effectiveness research on palliative cancer care: a systematic review. J Clin Oncol. 1997 Apr;15(4):1697–1707. [PubMed]
  • McWhinney IR, Bass MJ, Donner A. Evaluation of a palliative care service: problems and pitfalls. BMJ. 1994 Nov 19;309(6965):1340–1342. [PMC free article] [PubMed]
  • Borgia P, Schifano P, Spadea T, Milanese G, Fabrizi E, Abeni D, Perucci C, Rocchi G. Assessing effectiveness of home care for persons with AIDS: analysis of methodological problems. AIDS Care. 2002 Oct;14(5):645–650. [PubMed]
  • Higginson Irene J, Finlay Ilora G, Goodwin Danielle M, Hood Kerry, Edwards Adrian G K, Cook Alison, Douglas Hannah Rose, Normand Charles E. Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? J Pain Symptom Manage. 2003 Feb;25(2):150–168. [PubMed]
  • Henley Lesley D. End of life care in HIV-infected children who died in hospital. Dev World Bioeth. 2002 May;2(1):38–54. [PubMed]
  • Patrick Donald L, Curtis J Randall, Engelberg Ruth A, Nielsen Elizabeth, McCown Ellen. Measuring and improving the quality of dying and death. Ann Intern Med. 2003 Sep 2;139(5 Pt 2):410–415. [PubMed]
  • Grande GE, Todd CJ. Why are trials in palliative care so difficult? Palliat Med. 2000 Jan;14(1):69–74. [PubMed]
  • Rinck GC, van den Bos GA, Kleijnen J, de Haes HJ, Schadé E, Veenhof CH. Methodologic issues in effectiveness research on palliative cancer care: a systematic review. J Clin Oncol. 1997 Apr;15(4):1697–1707. [PubMed]
  • Keeley D. Rigorous assessment of palliative care revisited. Wisdom and compassion are needed when evidence is lacking. BMJ. 1999 Dec 4;319(7223):1447–1448. [PMC free article] [PubMed]
  • Goodwin Danielle M, Higginson Irene J, Edwards Adrian G K, Finlay Ilora G, Cook Alison M, Hood Kerry, Douglas Hannah-Rose, Normand Charles E. An evaluation of systematic reviews of palliative care services. J Palliat Care. 2002 Summer;18(2):77–83. [PubMed]
  • Manfredi PL, Morrison RS, Morris J, Goldhirsch SL, Carter JM, Meier DE. Palliative care consultations: how do they impact the care of hospitalized patients? J Pain Symptom Manage. 2000 Sep;20(3):166–173. [PubMed]
  • McQuillar R, Finlay I, Roberts D, Branch C, Forbes K, Spencer MG. The provision of a palliative care service in a teaching hospital and subsequent evaluation of that service. Palliat Med. 1996 Jul;10(3):231–239. [PubMed]
  • Clayton Josephine, Fardell Belinda, Hutton-Potts Jane, Webb David, Chye Richard. Parenteral antibiotics in a palliative care unit: prospective analysis of current practice. Palliat Med. 2003 Jan;17(1):44–48. [PubMed]
  • Hearn J, Higginson IJ. Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group. Qual Health Care. 1999 Dec;8(4):219–227. [PMC free article] [PubMed]
  • Lin Maria K, Wu Albert W, Revicki Dennis A. Incorporating quality of life measures in HIV clinical trials. HIV Clin Trials. 2002 May-Jun;3(3):202–218. [PubMed]
  • Orchi N, Girardi E, Antonucci G, Nurra G, Perucci CA, Ippolito G. Changing patterns of "hospital-at-home" care use by persons with AIDS in the era of combination antiretroviral therapy. AIDS Patient Care STDS. 2001 Dec;15(12):625–632. [PubMed]
  • Armes PJ, Higginson IJ. What constitutes high-quality HIV/AIDS palliative care? J Palliat Care. 1999 Winter;15(4):5–12. [PubMed]
  • Heath JM. Care of persons with AIDS in the nursing home. Fam Med. 1998 Jun;30(6):436–440. [PubMed]
  • Buchanan Robert J, Wang Suojin, Huang Chunfeng. Profiles of nursing home residents with HIV. J Health Care Poor Underserved. 2002 Aug;13(3):379–391. [PubMed]
  • Baker A. Dedicated palliative carers. Nurs Times. 1997 Dec 10;93(50):36–37. [PubMed]
  • Stephenson J, Woods S, Scott B, Meadway J. HIV-related brain impairment from palliative care to rehabilitation. Int J Palliat Nurs. 2000 Jan;6(1):6–11. [PubMed]
  • Adelstein W, Burton S. Palliative care in the acute hospital setting. J Neurosci Nurs. 1998 Jun;30(3):200–204. [PubMed]
  • Maull FW. Issues in prison hospice: toward a model for the delivery of hospice care in a correctional setting. Hosp J. 1998;13(4):57–82. [PubMed]
  • Salt S, Wilson L, Edwards A. The use of specialist palliative care services by patients with human immunodeficiency virus-related illness in the Yorkshire Deanery of the northern and Yorkshire region. Palliat Med. 1998 May;12(3):152–160. [PubMed]
  • Drew RS, Mgombane G, Nyaruwa T, Foster G. Estimating coverage of a community-based home care programme. Trop Doct. 1997 Oct;27(4):210–214. [PubMed]
  • Curtis J Randall, Wenrich Marjorie D, Carline Jan D, Shannon Sarah E, Ambrozy Donna M, Ramsey Paul G. Patients' perspectives on physician skill in end-of-life care: differences between patients with COPD, cancer, and AIDS. Chest. 2002 Jul;122(1):356–362. [PubMed]
  • Pierson CM, Curtis J Randall, Patrick DL. A good death: a qualitative study of patients with advanced AIDS. AIDS Care. 2002 Oct;14(5):587–598. [PubMed]
  • Selwyn Peter A, Forstein Marshall. 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 Aug 13;290(6):806–814. [PubMed]
  • Finlay I. UK strategies for palliative care. J R Soc Med. 2001 Sep;94(9):437–441. [PMC free article] [PubMed]
  • Tramarin A, Milocchi F, Tolley K, Vaglia A, Marcolini F, Manfrin V, de Lalla F. An economic evaluation of home-care assistance for AIDS patients: a pilot study in a town in northern Italy. AIDS. 1992 Nov;6(11):1377–1383. [PubMed]
  • Crowe S. Home truths. Nurs Times. 97(39):26–27. [PubMed]
  • Martin JP. Hospice and home care for persons with AIDS/ARC: meeting the challenges and ensuring quality. Death Stud. 1988;12(5-6):463–480. [PubMed]
  • Martin JP. The AIDS home care and hospice program. A multidisciplinary approach to caring for persons with AIDS. Am J Hosp Care. 1986 Mar-Apr;3(2):35–37. [PubMed]
  • Murie R. A milestone in AIDS care. Nurs Times. 1992 Oct 14;88(42):24–27. [PubMed]
  • Ley DC. Caring for persons with AIDS: initiatives. The Casey House model. J Palliat Care. 1988 Dec;4(4):111–115. [PubMed]
  • Moss V. Caring for persons with AIDS: initiatives. The Mildmay approach. J Palliat Care. 1988 Dec;4(4):102–106. [PubMed]
  • Cumming M. Difficulties in developing a respite program. J Palliat Care. 1993 Autumn;9(3):18–22. [PubMed]
  • Singh S, Hawkins D, Connolly M, Gazzard B. Model of care for the hospital treatment of individuals with HIV infection. Health Trends. 1991;23(2):55–59. [PubMed]
  • Cherin DA, Huba GJ, Brief DE, Melchior LA. Evaluation of the transprofessional model of home health care for HIV/AIDS. Home Health Care Serv Q. 1998;17(1):55–72. [PubMed]
  • Schietinger H, Almedal C, Marianne BN, Jacqueline RK, Ravn BL. Teaching Rwandan families to care for people with AIDS at home. Hosp J. 1993;9(1):33–53. [PubMed]
  • Gibb DM, Masters J, Shingadia D, Trickett S, Klein N, Duggan C, Novelli V, Mercey D. A family clinic--optimising care for HIV infected children and their families. Arch Dis Child. 1997 Dec;77(6):478–482. [PMC free article] [PubMed]
  • Noe M. The Bailey-Boushay House: an AIDS facility. J AHIMA. 1993 Oct;64(10):46–47. [PubMed]
  • Selwyn PA, Goulet JL, Molde S, Constantino J, Fennie KP, Wetherill P, Gaughan DM, Brett-Smith H, Kennedy C. HIV as a chronic disease: implications for long-term care at an AIDS-dedicated skilled nursing facility. J Urban Health. 2000 Jun;77(2):187–203. [PMC free article] [PubMed]

Articles from Sexually Transmitted Infections are provided here courtesy of BMJ Group

Formats:

Related citations in PubMed

See reviews...See all...

Cited by other articles in PMC

See all...

Links

  • Cited in Books
    Cited in Books
    PubMed Central articles cited in books
  • MedGen
    MedGen
    Related information in MedGen
  • PubMed
    PubMed
    PubMed citations for these articles

Recent Activity

Your browsing activity is empty.

Activity recording is turned off.

Turn recording back on

See more...