End-of-life care for HIV-infected patients with malignancies: A questionnaire-based survey

Abstract

Background:

The number of HIV-infected patients who require palliative or end-of-life care is increasing, and the status of end-of-life care for HIV patients with malignancies is unclear.

Aim:

This study aimed to evaluate the end-of-life care provided to HIV patients with malignancies in Japan.

Design:

National cross-sectional questionnaire-based survey.

Setting/participants:

Questionnaires were delivered to the medical staff of 378 regional core hospitals/core hospitals for AIDS and 285 palliative care units in Japan. Data were collected between August and October 2013.

Results:

Overall, 226 regional core hospitals/core hospitals for AIDS (59.8%) responded. A total of 55 institutions (24.3%) provided end-of-life care to HIV patients with malignancies. Regarding the place of death of the patients, 69.1% died at the institution whereas 18.2% were transferred to palliative care units. The requests of 16 (29.1%) institutions to transfer patients to palliative care units were rejected. Of the 378 palliative care units, 179 (62.8%) responded. While 13 palliative care units (4.6%) provided care to hospitalized HIV patients with malignancies, 20 (11.2%) refused to accept these patients for treatment because of a lack of experience in treating these patients and a lack of knowledge regarding HIV infection.

Conclusion:

Our findings suggest that in Japan, HIV patients with malignancies have difficulties obtaining hospitalization at a palliative care unit, which is likely due to a lack of experience among the professionals in treating such patients as well as a lack of knowledge about HIV.

Keywords

Palliative care terminal care AIDS HIV neoplasms hospice

Get full access to this article

View all access options for this article.

References

Shiels

Pfeiffer

Hall

. Proportions of Kaposi sarcoma, selected non-Hodgkin lymphomas, and cervical cancer in the United States occurring in persons with AIDS, 1980–2007. JAMA 2011; 305: 1450–1459.

Bedimo

Chen

Accortt

. Trends in AIDS-defining and non-AIDS-defining malignancies among HIV-infected patients: 1989–2002. Clin Infect Dis 2004; 39: 1380–1384.

Shiels

Cole

Wegner

. Effect of HAART on incident cancer and noncancer AIDS events among male HIV seroconverters. J Acquir Immune Defic Syndr 2008; 48: 485–490.

Crum-Cianflone

Hullsiek

Marconi

. Trends in the incidence of cancers among HIV-infected persons and the impact of antiretroviral therapy: authors’ reply. AIDS 2009; 23: 1791–1792.

Rubinstein

Aboulafia

Zloza

. Malignancies in HIV/AIDS: from epidemiology to therapeutic challenges. AIDS 2014; 28: 453–465.

Shiels

Cole

Kirk

. A meta-analysis of the incidence of non-AIDS cancers in HIV-infected individuals. J Acquir Immune Defic Syndr 2009; 52: 611–622.

Sackoff

Hanna

Pfeiffer

. Causes of death among persons with AIDS in the era of highly active antiretroviral therapy: New York City. Ann Intern Med 2006; 145: 397–406.

Palella

Jr Baker

Moorman

. 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: 27–34.

Hessol

Pipkin

Schwarcz

. The impact of highly active antiretroviral therapy on non-AIDS-defining cancers among adults with AIDS. Am J Epidemiol 2007; 165: 1143–1153.

10.

Zucchetto

Suligoi

De Paoli

. Excess mortality for non-AIDS-defining cancers among people with AIDS. Clin Infect Dis 2010; 51: 1099–1101.

11.

Temel

Greer

Muzikansky

. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010; 363: 733–742.

12.

UNAIDS. Report to UNAIDS—HIV/AIDS trends in Japan, March 2015, www.unaids.org/sites/default/files/country/documents/JPN_narrative_report_2015.pdf (accessed 25 October 2015).

13.

Nagai

Iwasaki

Odawara

. Actual status of AIDS-related lymphoma management in Japan. Int J Hematol 2008; 87: 442–443.

14.

Okuma

Tanuma

Kamiryo

. A multi-institutional study of clinicopathological features and molecular epidemiology of epidermal growth factor receptor mutations in lung cancer patients living with human immunodeficiency virus infection. J Cancer Res Clin Oncol 2015; 141: 1669–1678.

15.

Deeks

Lewin

Havlir

. The end of AIDS: HIV infection as a chronic disease. Lancet 2013; 382: 1525–1533.

16.

Franzetti

Adorni

Parravicini

. Trends and predictors of non-AIDS-defining cancers in men and women with HIV infection: a single-institution retrospective study before and after the introduction of HAART. J Acquir Immune Defic Syndr 2013; 62: 414–420.

17.

Cohen

Pivodic

Miccinesi

. International study of the place of death of people with cancer: a population-level comparison of 14 countries across 4 continents using death certificate data. Br J Cancer 2015; 113: 1397–1404.

18.

Fukui

Yoshiuchi

Fujita

. Japanese people’s preference for place of end-of-life care and death: a population-based nationwide survey. J Pain Symptom Manage 2011; 42: 882–892.

19.

Tsuneto

. Past, present, and future of palliative care in Japan. Jpn J Clin Oncol 2013; 43: 17–21.

20.

Smith

Temin

Alesi

. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol 2012; 30: 880–887.

21.

Simms

Higginson

Harding

. What palliative care-related problems do patients experience at HIV diagnosis? A systematic review of the evidence. J Pain Symptom Manage 2011; 42: 734–753.

22.

Berg

Cooperman

Newville

. Self-efficacy and depression as mediators of the relationship between pain and antiretroviral adherence. AIDS Care 2009; 21: 244–248.

23.

Ammassari

Antinori

Aloisi

. Depressive symptoms, neurocognitive impairment, and adherence to highly active antiretroviral therapy among HIV-infected persons. Psychosomatics 2004; 45: 394–402.

24.

Shawn

Campbell

Mnguni

. The spectrum of symptoms among rural South Africans with HIV infection. J Assoc Nurses AIDS Care 2005; 16: 12–23.

25.

Trevino

Pargament

Cotton

. Religious coping and physiological, psychological, social and spiritual outcomes in patients with HIV/AIDS: cross-sectional and longitudinal findings. AIDS Behav 2010; 14: 379–389.

26.

Sherman

McSherry

. Quality of life of patients with advanced cancer and acquired immune deficiency syndrome and their family caregivers. J Palliat Med 2006; 9: 948–963.

27.

Simms

Higginson

Harding

. Integration of palliative care throughout HIV disease. Lancet Infect Dis 2012; 12: 571–575.

28.

Selwyn

. Palliative care and social justice. J Pain Symptom Manage 2008; 36: 513–515.