HIV in Young Adulthood: Leveraging Palliative Care to Address Disparities and Goals

IF 3.5 2区医学 Q2 CLINICAL NEUROLOGY

Journal of pain and symptom management Pub Date : 2025-04-10 DOI:10.1016/j.jpainsymman.2025.02.027

Ella Sorscher MD MBE, Khaliah Johnson MD, Victor Cornett LMSW

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Outcomes

1. Utilizing this case-based approach, participants will self-report the ability to analyze and evaluate social barriers to access to and engagement with therapies for pediatric and young adult patients with Human Immunodeficiency Virus in the United States.

2. Applying the case discussion, participants will self-report the ability to help enhance patient engagement in comprehensive, outpatient HIV treatment—including medication adherence—through identifying goals and minimizing suffering.

Key Message

Young patients with HIV/AIDS from historically marginalized backgrounds are vulnerable due to social marginalization and are less likely to benefit from therapeutic advancements. Even when able to engage in treatment, they are at increased risk for long-term sequelae, high symptom burden, and shortened life span. Integrated, outpatient palliative care for pediatric patients with HIV supports goals throughout disease trajectory.

Abstract

Youth with advanced Human Immunodeficiency Virus (HIV)/Acquired Immunodeficiency Syndrome (AIDS) in the United States face stigma and socio-economic barriers to access antiretroviral therapy (ART), leading to increased morbidity and mortality. Outpatient palliative care integrated into a pediatric HIV clinic is uniquely situated to foster trust in the medical system, minimize suffering, and boost ART adherence.

Case Description

DP is a 24-year-old man with a history of HIV/AIDS, incarceration, depression, sexual abuse, and housing instability. His HIV has been complicated by challenges to adherence; AIDS-defining illnesses; and progressive, severe neuropathy. Our outpatient palliative care team was introduced to DP after multiple hospitalizations for HIV-related complications in the setting of DP not taking ART. Over several visits, we elicited his hope to pursue an independent life, currently stymied by neuropathic pain that left him largely bed-bound, dependent, and isolated. Characterizing his goals increased DP's trust with the medical team and adherence to ART. Despite these changes, his viral load remains high with concern for genotypic resistance. There is a chance that DP will never be virologically controlled and his HIV will continue to advance. Given this, our longitudinal, outpatient relationship with DP has become more imperative as we navigate trust and elicit evolving goals amidst medical uncertainty.

Conclusion

Young patients with HIV like DP remain a vulnerable group due to social marginalization and perpetuated distrust of medical systems and therefore are less likely to benefit from therapeutic advancements. Even when fully able to engage in treatment, they are at increased risk for long-term sequelae, high symptom burden, and shortened life spans compared to non-infected counterparts. While still evolving, the team's relationship with DP illustrates the value of early outpatient palliative care when caring for pediatric patients with HIV and the critical importance of supporting goals of care as patients’ disease trajectories evolve.

References

Wilkins ML, Dallas RH, Fanone KE, Lyon ME. Pediatric Palliative Care for youth with HIV/AIDS: systematic review of the literature. HIV/AIDS – Research and Palliative Care 2013; 5: 165-179. Harding R. Palliative Care as an Essential Component of the HIV Care Continuum. The Lancet HIV 2018; 9: e524-e530. Selwyn PA. Why should we care about palliative care for AIDS in the era of antiretroviral therapy? Sexually Transmitted Infections 2005; 81:2-3.

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青年成年期的艾滋病毒：利用姑息治疗解决差距和目标

Outcomes1。利用这种基于病例的方法，参与者将自我报告分析和评估美国儿童和年轻成人人类免疫缺陷病毒患者获得和参与治疗的社会障碍的能力。通过案例讨论，参与者将自我报告通过确定目标和尽量减少痛苦，帮助提高患者参与综合门诊艾滋病治疗的能力，包括药物依从性。来自历史边缘化背景的年轻艾滋病毒/艾滋病患者由于社会边缘化而变得脆弱，并且不太可能从治疗进步中受益。即使能够接受治疗，他们也面临长期后遗症的风险增加，症状负担高，寿命缩短。综合门诊姑息治疗儿童艾滋病患者支持整个疾病轨迹的目标。在美国，患有晚期人类免疫缺陷病毒(HIV)/获得性免疫缺陷综合征（AIDS）的青年在获得抗逆转录病毒治疗（ART）方面面临耻辱和社会经济障碍，导致发病率和死亡率增加。将门诊姑息治疗纳入儿科艾滋病毒诊所具有独特的地位，可促进对医疗系统的信任，最大限度地减少痛苦，并提高抗逆转录病毒治疗的依从性。病例描述dp是一名24岁男性，有HIV/AIDS病史、监禁史、抑郁症史、性虐待史和住房不稳定史。他的艾滋病毒因坚持治疗的挑战而变得复杂；种由艾滋病诱发的疾病;以及进行性严重的神经病变。我们的门诊姑息治疗团队是在因hiv相关并发症多次住院治疗后，在未接受抗逆转录病毒治疗的情况下引入DP的。在几次探视中，我们唤起了他追求独立生活的希望，目前他受到神经性疼痛的阻碍，卧床不起，依赖他人，孤立无援。描述他的目标增加了DP对医疗团队的信任和对ART的坚持。尽管有这些变化，他的病毒载量仍然很高，这与基因型耐药有关。DP有可能永远无法在病毒学上得到控制，他的艾滋病毒将继续扩散。鉴于此，我们与DP的纵向门诊关系变得更加必要，因为我们在医疗不确定性中导航信任并引出不断发展的目标。结论由于社会边缘化和对医疗系统的长期不信任，像DP这样的年轻HIV患者仍然是一个弱势群体，因此不太可能从治疗进步中受益。即使完全能够接受治疗，与未感染的人相比，他们面临长期后遗症的风险增加，症状负担高，寿命缩短。虽然仍在发展，但该团队与DP的关系说明了在照顾患有艾滋病毒的儿科患者时，早期门诊姑息治疗的价值，以及随着患者疾病轨迹的发展，支持护理目标的重要性。参考资料：wilkins ML， Dallas RH, Fanone KE, Lyon ME。青少年艾滋病毒/艾滋病儿童姑息治疗：文献的系统回顾。艾滋病毒/艾滋病-研究和姑息治疗2013；5: 165 - 179。哈丁R.姑息治疗作为艾滋病毒护理连续体的重要组成部分。柳叶刀艾滋病毒2018；9: e524-e530。塞尔温。在抗逆转录病毒疗法盛行的时代，我们为什么要关心艾滋病的姑息治疗？2005年性传播感染；81:2-3。

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来源期刊

Journal of pain and symptom management 医学-临床神经学

CiteScore

8.90

自引率

6.40%

发文量

821

审稿时长

26 days

期刊介绍： The Journal of Pain and Symptom Management is an internationally respected, peer-reviewed journal and serves an interdisciplinary audience of professionals by providing a forum for the publication of the latest clinical research and best practices related to the relief of illness burden among patients afflicted with serious or life-threatening illness.