Unmet palliative care needs among individuals living with HIV/AIDS: a cross-sectional study utilising SPICT-LIS, ESAS-R, and NAT: PD tools

AIDS Care. 2025 Dec 11:1-11. doi: 10.1080/09540121.2025.2599497. Online ahead of print.

Abstract

Individuals living with HIV/AIDS (PLWHA) face significant physical, psychological and social challenges, even with the progress made in antiretroviral therapy (ART). The integration of palliative care has been shown to enhance quality of life and reduce symptom burden; however, there is limited evidence from India on this topic. This cross-sectional study investigated the unmet palliative care needs of PLWHA attending a tertiary HIV clinic in Karnataka, India. Out of 118 eligible patients, 97 (82.2%) agreed to participate from January to June 2019. Data were gathered using the Supportive and Palliative Care Indicators Tool (SPICT-LIS), the Edmonton Symptom Assessment Scale - Revised (ESAS-R) and the Needs Assessment Tool for Progressive Disease (NAT: PD). Overall, 43.3% of participants met the SPICT-LIS criteria for palliative care needs, and 42.3% reported experiencing at least one severe symptom, with fatigue, pain and depression being the most common. Factors such as functional impairment (Karnofsky Performance Status < 80), recent hospitalization, and CD4 counts below 200 cells/μL were significant predictors of the need for palliative care. Despite these findings, 97.6% of eligible participants had never received palliative services. Barriers to care included stigma, lack of awareness and limited integration of services. These findings suggest the urgent need to incorporate palliative care into ART programs to improve the quality of life and address ongoing health disparities among PLWHA in India.

Keywords: HIV/AIDS; SDG 10: Reduced inequalities; SDG 16: Peace, justice and strong institutions; SDG 3: Good health and well-being; palliative care; quality of life; symptom burden.