Early Use of the Palliative Approach to Improve Patient Outcomes in HIV Disease: Insights and Findings From the Care and Support Access (CASA) Study 2013-2019

Abstract

Young men of color who have sex with men (yMSM) living with human immunodeficiency virus (HIV) in syndemic environments have been difficult-to-retain in care resulting in their being at-risk for poor health outcomes despite availability of effective once-daily antiretroviral treatment (ART). Multiple methods have been implemented to improve outcomes for this cohort; none with sustainable results. Outpatient HIV staff themselves may be a contributing factor. We introduced multidisciplinary staff to the concept of using a palliative approach early (ePA) in outpatient HIV care management to enable them to consider the patient-level complexity of these young men. Young MSM (18-35 years of age) enrolled in and cared for at the intervention site of the Care and Support Access Study (CASA), completed serial surveys over 18 months. Patients’ Global and Summary quality of life (QoL) increased during the study at the intervention site (IS) where staff learned about ePA, compared with patients attending the control site (CS) (p=.021 and p=.018, respectively). Using serial surveys of staff members, we found that in the era of HIV disease control, outpatient staff are stressed more by environmental factors than by patients’ disease status seen historically in the HIV epidemic. A Community Advisory Panel of HIV stakeholders contributed to all phases of this study and altered language used in educational activities with staff members to describe the patient cohort.

Self-Care Management Practices for Patients with Acquired Immune Deficiency Syndrome

“…From my point of view that level of education might affect the size of their information because scientific level JNSBU increased, the bulk of knowledge must be increased to serve the study because they were able to understand tool of study. This result was in contrast with Alexander et al, (2021), who studied "Early Use of the Palliative Approach to Improve Patient Outcomes in HIV Disease: Insights and Findings From the Care and Support, USA" and found that, the majority of participants were 18-30 years of age with Mean ±SD (29. ±3.9), Forty-five percent were employed.…”

Palliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness: A systematic mixed-methods review

“…38,[41][42][43]46,50 Many of the experiences captured in the literature were characterized by fear and worry largely associated with a pervasive culture of discrimination and stigma, the heteronormative and cisnormative assumptions of health workers, being on the receiving end of homophobic and transphobic behaviors, social isolation which worsened in the context of aging, losing autonomy, or being trans, and concerns about confronting an undignified death. [38][39][40][41][42][43][44][45][47][48][49][50] The preferences of LGBTQ+ individuals pertained to the inclusion of chosen families in decision-making and care planning, disclosure of their sexual orientation and/or gender if clinical environments were perceived as safe, and a strong desire to maintain functional independence and agency. [41][42][43][48][49][50] Many study participants reported either anticipated or actual bias, discrimination, or mistreatment from healthcare professionals.…”

“…Studies described LGBTQ+ identities within samples using different parameters. Two papers recruited men who have sex with men, 39,45 seven recruited LGB, LGBT, or LGBTI samples, 38,40-42,44,46,50, four papers focused on African American/Black…”

“…A diverse range of experiences of LGBTQ+ persons in the context of palliative and end of life care were described throughout the studies. [38][39][40][41][42][43][44][45][47][48][49][50] Experiences regarding institutional and service barriers and stressors, 41,43,50 as well as fears and worries about encountering discriminatory and/or harmful behaviors from health workers were explicit. 40,42,[47][48][49] Studies described differences in experiences across LGBTQ+ identities (e.g.…”

“…LGB as opposed to trans) and for individuals with minoritized intersectional identities. 48,49 In a study of men who have sex with men positive for HIV, 45 there was a strong correlation between an early outpatient palliative care approach (e.g. not reserved for end-of-life) and increased quality of life, although these study findings were potentially confounded by the oncedaily HIV treatment introduced during the same measurement period.…”