Challenges to advance care planning among multidisciplinary health professionals in China.

BACKGROUND: Advance care planning (ACP) is a critical component of quality end-of-life care. Little is known regarding the cultural influences on health professionals' attitudes toward the discussion of ACP in China. OBJECTIVE: To better understand attitudes toward ACP among Chinese healthcare professionals in China and the influence of cultural factors such as filial piety, or xiào. METHODS: A mixed methods study was used. This study reports the results of a descriptive cross-sectional survey of physicians, nurses and social workers with experience in palliative and end-of-life care. RESULTS: Some 102 completed surveys were obtained. Most Chinese health professionals had an overall positive attitude toward ACP, acknowledging that these discussions should occur. However, there was a general lack of confidence and sense of reluctance among participants to engage in ACP discussions. CONCLUSION: The lack of statistical difference between the various health professionals suggests that they all faced challenges in participating in ACP discussions. Future research should focus on the influences of cultural factors such as xiào on ACP discussion, and develop culturally sensitive strategies to facilitate these discussions in the Chinese community.

A Multimodal Ayurveda and Mind-Body Therapeutic Intervention for Chronic Symptoms Attributed to a Postinfectious Syndrome: A Pilot Study.

Objective: Evaluate feasibility and impact of a multimodal integrative therapeutic intervention in patients presenting with chronic symptoms attributed to a postinfectious syndrome. Design: This was a prospective longitudinal single-center pilot study conducted from January 2019 to December 2020. Setting/Location: University of Maryland Lyme Program, Baltimore Maryland. Subjects: Persons presenting for Lyme evaluation for symptoms attributed to Lyme disease. Interventions: Participants attended two 1-h individual instructional sessions consisting of Ayurveda-based dietary intervention and breath-coordinated mind-body practice to be used for home practice. Outcome measures: Standard measures of impact were obtained at baseline, 1, 3, 6, and 12 months using the following validated survey instruments: Perceived Stress Scale (PSS), PROMIS Global Health v1.2 (GH), and PROMIS 29 v2.0 survey. Results: From 216 patients presenting for Lyme evaluation, 19 participants enrolled with 84% completing the study (N = 16). Baseline PROMIS GH scores consisting of general Physical Health (GPH) and general Mental Health (GMH) scores were lower in the study population than in the general U.S. population. PROMIS 29 scores were higher for fatigue, anxiety, and pain than those in the general U.S. population. Over 12-month period, improvement in both the GPH and GMH was 6.09 (confidence interval [95% CI] = 2.71-9.46; p < 0.001) and 4.65 (95% CI = 1.50-7.80; p = 0.004), respectively. PROMIS 29 scores showed the greatest improvement in fatigue at -7.91 (95% CI = -12.34 to -3.48; p < 0.001), pain interference -5.08 (95% CI = -9.20 to -0.96; p = 0.016), and ability to participate in social roles and activities 7.48 (95% CI = 3.21-11.75; p = 0.001) and least with depression -1.82 (95% CI = -4.74 to 1.10; p = 0.223). Employment status had significant effects on almost all outcome scores. Postinfectious state was associated with improvement in anxiety and PSS scores. Conclusions: A multimodal Ayurvedic and breath-coordinated mind-body therapeutic intervention is feasible and a potential nonpharmacologic therapeutic option for persons presenting with pain, stress, fatigue, physical dysfunction, and sleep disturbance attributed to a postinfectious syndrome. Further research is needed to determine efficacy in this population and in other groups with similar symptom complexes due to postinfectious syndromes.

"I got so much on my plate": Understanding care discontinuity for HIV and HCV among formerly incarcerated persons.

OBJECTIVE: To explore barriers to care continuity among formerly incarcerated persons with HIV and/or hepatitis C. DATA SOURCES AND STUDY SETTING: We draw on data from semi-structured interviews conducted in 2018-2019 with 30 formerly incarcerated persons and 10 care providers. Data were collected across two clinics in Baltimore, Maryland, and Washington, D.C. STUDY DESIGN: We recruited participants using a combination of nonprobability sampling techniques. Participants completed closed-ended questionnaires and took part in semi-structured interviews related to treatment barriers and incentives. DATA COLLECTION/EXTRACTION METHODS: Interviews were transcribed using Express Scribe software and transcriptions were open coded using NVivo 12 software. An iterative process was used to relate and build upon emergent themes in interviews. PRINCIPAL FINDINGS: Our study illuminates both internal and external barriers to care continuity. The most common external barriers were system navigation and housing instability. Internal barriers consisted of overlapping issues related to mental health, substance use, and feelings of shame and/or denial. CONCLUSION: An overarching theme is that formerly incarcerated persons with HIV and/or HCV are grappling with numerous challenges that can threaten their health and health care. These barriers are cumulative, intersecting, and reciprocal.

Young Same-Gender-Loving Men (SGLM) Living with HIV Continue to Experience Symptoms that May Impair Their Retention in Care.

Over half of HIV infections in the U.S. are among young gay, bisexual, and other same-gender-loving men (SGLM). Symptoms affecting these individuals must be clarified in order to be detected and addressed by health care providers. This report describes the symptom prevalence in young SGLM living with HIV. Study participants in an urban context experienced high symptom burden with a median of 6.2 symptoms despite antiretroviral treatment with viral suppression. Most common symptoms included fatigue (57%), depression (54%), insomnia (53%), anxiety (44%), dizziness (33%), and headache (33%). This study showed that young SGLM with HIV experience a high number of symptoms given their age. Health care providers should work to alleviate this symptom burden that affects patients' quality of life and may influence engagement in care.

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.

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.

What Matters Most at the End-of-Life for Chinese Americans?

Background: To provide optimal end-of-life (EOL) care in the Chinese American population, we need to have a better understanding of what matters most at EOL from their perspective. Experiencing a "good death" at the EOL is the optimal goal of palliative care. Studies show that the meaning and description of good death varies across cultures in different populations. In the United States, Chinese Americans comprise the largest Asian demographic. Aim: To describe EOL wishes, which define a good death for Chinese Americans. Method: Qualitative study using focus groups. A convenience sample of 60 Chinese Americans was recruited from a community organization in Maryland. Ten focus group discussion sessions were conducted. Results: Wishes at the EOL that defined a good death for the participants in this study included being pain-free, not being a burden to family, being with family, having a trusted physician, maintaining dignity, and prayer. Conclusion: A good death is a complex concept. What matters most to patients at the EOL differs depending on their cultural background. When caring for Chinese Americans, a comprehensive EOL care plan should include cultural considerations in addition to physical, psychosocial, and spiritual needs.

Implementation of HIV Palliative Care: Interprofessional Education to Improve Patient Outcomes in Resource-Constrained Settings, 2004-2012.

Palliative care (PC), introduced early in the management of chronic illness, improves patient outcomes. Early integration of a palliative approach for persons with HIV has been documented to be effective in identifying and managing patient-level concerns over the past decade in African settings. The experience of implementing PC in multiple African and other resource-constrained settings (RCSs) emphasizes the need for essential palliative competencies that can be integrated with chronic disease management for patients and their families facing life-limiting illness. This article is an historical description of how basic palliative competencies were observed to be acceptable for health workers providing outpatient HIV care and treatment during eight years of U.S. implementation of "care and support," a term coined to represent PC for persons living with HIV in RCS. The need for team building and interprofessional education is highlighted. The model is currently being tested in one U.S. city and may represent a mechanism for expanding the palliative approach into management of chronic disease. Such competencies may play a role in the development of the patient-centered medical home, a critical component of U.S. health care reform.

Pain Management for Persons Living With HIV Disease: Experience With Interprofessional Education in Nigeria.

CONTEXT: Pain management (PM) has not been routinely incorporated into HIV/AIDS care and treatment in resource-constrained settings. OBJECTIVES: We describe training for multidisciplinary teams tasked with integrating care management into HIV clinics to address pain for persons living with HIV in Nigeria. METHODS: Education on PM was provided to mixed-disciplinary teams including didactic and iterative sessions following home and hospital visits. Participants identified challenges and performed group problem solving. RESULTS: HIV trainers identified barriers to introducing PM reflecting views of the patient, providers, culture, and the health environment. Implementation strategies included (1) building upon existing relationships; (2) preliminary advocacy; (3) attention to staff needs; and (4) structured data review. CONCLUSION: Implementing PM in Nigerian HIV clinics requires recognition of cultural beliefs.

Palliative care and support for persons with HIV/AIDS in 7 African countries: implementation experience and future priorities.

To combat morbidity and mortality from the worldwide epidemic of the human immunodeficiency virus (HIV), the United States Congress implemented a President's Emergency Plan for AIDS Relief (PEPFAR) in 30 resource-limited countries to integrate combination antiretroviral therapy (ART) for both prevention and cure. Over 35% of eligible persons have been successfully treated. Initial legislation cited palliative care as an essential aspect of this plan but overall health strengthening became critical to sustainability of programming and funding priorities shifted to assure staffing for care delivery sites; laboratory and pharmaceutical infrastructure; data collection and reporting; and financial management as individual countries are being encouraged to assume control of in-country funding. Given infrastructure requisites, individual care delivery beyond ART management alone has received minimal funding yet care remains necessary for durable viral suppression and overall quality of life for individuals. Technical assistance staff of one implementing partner representing seven African countries met to clarify domains of palliative care compared with the substituted term "care and support" to understand potential gaps in on-going HIV care. They prioritized care needs as: 1) mental health (depression and other mood disorders); 2) communication skills (age-appropriate disclosure of HIV status); 3) support of care-providers (stress management for sustainability of a skilled HIV workforce); 4) Tied Priorities: symptom management in opportunistic infections; end-of-life care; spiritual history-taking; and 5) Tied Priorities: attention to grief-related needs of patients, their families and staff; and management of HIV co-morbidities. This process can inform health policy as funding transitions to new priorities.

Development of required postgraduate palliative care training for internal medicine residents and medical oncology fellows.

BACKGROUND: The need for better care for terminally ill patients led us to create an educational program to provide internal medicine residents and medical oncology fellows basic competency in palliative and end-of-life care. METHODS: An interdisciplinary team identified educational strategies, course objectives, content, and evaluation instruments. RESULTS AND CONCLUSIONS: Our strategy is to use a required Web-based course to establish a knowledge base upon which specific training during clinical rotations build skills. Field testing of the Web course showed it was an effective tool for delivering clinically applicable content. Skill building experiences are now being integrated into selected clinical rotations.