Carla Alexander

Generating an African palliative care evidence base: The context, need, challenges, and strategies

The enormous burden of progressive, incurable disease in sub-Saharan Africa is reflected in the epidemiology of cancer and HIV. However, there has been little research activity and evidence generated to inform appropriate and effective responses. A collaborative of clinicians, academics and advocates have been active in the design, delivery and reporting of research activities in African palliative care. Here, they report the methodological, ethical, logistic and capacity-based challenges of conducting research in the sub-Saharan context from their experience. A number of strategies and responses are presented.

Family perspectives on communication with healthcare providers during end-of-life cancer care

PURPOSE/OBJECTIVES To assess healthcare provider communication about end-of-life (EOL) and hospice care with patients with terminal cancer and their families, from the perspective of the family members. DESIGN Exploratory, qualitative study using focus group discussion. SETTING University of Maryland Greenebaum Cancer Center. SAMPLE 24 spouses and first-degree relatives of deceased patients with cancer who had been treated at the cancer center from 2000-2002. METHODS Family members participated in one of two focus group discussions and completed a short questionnaire regarding their sociodemographic characteristics and the type of EOL care their deceased relatives had received. Quantitative data were analyzed using descriptive statistics. Qualitative data were audiotaped and analyzed by comparing, contrasting, and summarizing content themes from the focus groups using NUD IST 5(N5) software. MAIN RESEARCH VARIABLES Family perceptions of communication with the healthcare team in EOL cancer care. FINDINGS Participants associated the information, content, style, language, and timing of communication about EOL and hospice care from healthcare professionals with patient age, attitudes, and compliance with medical decisions. Informed decisions about EOL care by patients and their family members, including the use of hospice services, appeared to be compromised by these types of communication biases. CONCLUSIONS Satisfaction with EOL care was associated with the perceived quality of communication among patients, family members, and the healthcare team. IMPLICATIONS FOR NURSING Study findings highlight the importance of training healthcare professionals in the content, timing, and potential biases associated with information delivery to facilitate informed decisions about EOL and hospice care to dying patients and their families.

Nursing Home Physician Educational Intervention Improves End-of-Life Outcomes

CONTEXT Nursing homes are the setting for one of five deaths in the United States. Unfortunately these deaths are often accompanied by pain and symptoms of discomfort. OBJECTIVE To determine if an educational intervention designed for nursing home physicians improves the quality of dying for nursing home residents. DESIGN Prospective measurement of changes in end-of-life medical care indicators. INTERVENTION Half-day adult educational outreach program, including audit and feedback, targeted at opinion leaders, and quality improvement suggestions. SETTING Five geographically diverse Maryland skilled nursing facilities with a total of 654 beds. PARTICIPANTS The terminal care delivered by 61 physicians who cared for 203 dying residents in the 5 facilities was reviewed. An intervention was targeted to medical directors and those physicians with the majority of patients. Twelve physicians participated in the educational program. MAIN OUTCOME MEASURES Chart documentation of recognition of possible death, presence of advance directives, pain control, analgesics used, dyspnea control, control of uncomfortable symptoms during the dying process, documented hygiene, documented bereavement support, and total patient comfort. RESULTS The four nursing facilities that completed the intervention all had significant improvements in end-of-life care outcomes (p < 0.001, chi2). No statistically significant changes were found in any measure in the cohort nursing facility that did not complete the intervention. When we compared residents with hospice services to those without, we found significant increases in documentation of better hygiene, bereavement support, and total patient comfort (p < 0.001, chi2 for each). CONCLUSIONS Important terminal care outcomes can be significantly improved by targeting key nursing home physicians with an adult educational program that includes audit and feedback, and quality improvement suggestions.

High cancer-related mortality in an urban, predominantly African-American, HIV-infected population.

Objective:To determine mortality associated with a new cancer diagnosis in an urban, predominantly African–American, HIV-infected population. Design:Retrospective cohort study. Methods:All HIV-infected patients diagnosed with cancer between 1 January 2000 and 30 June 2010 were reviewed. Mortality was examined using Kaplan–Meier estimates and Cox proportional hazards models. Results:There were 470 cases of cancer among 447 patients. Patients were predominantly African–American (85%) and male (79%). Non-AIDS-defining cancers (NADCs, 69%) were more common than AIDS-defining cancers (ADCs, 31%). Cumulative cancer incidence increased significantly over the study period. The majority (55.9%) was taking antiretroviral therapy (ART) at cancer diagnosis or started afterward (26.9%); 17.2% never received ART. Stage 3 or 4 cancer was diagnosed in 67%. There were 226 deaths during 1096 person years of follow-up, yielding an overall mortality rate of 206 per 1000 person years. The cumulative mortality rate at 30 days, 1 year, and 2 years was 6.5, 32.2, and 41.4%, respectively. Mortality was similar between patients on ART whether they started before or after the cancer diagnosis but was higher in patients who never received ART. In patients with a known cause of death, 68% were related to progression of the underlying cancer. Conclusion:In a large cohort of urban, predominantly African–American patients with HIV and cancer, many patients presented with late-stage cancer. There was substantial 30-day and 2-year mortality, although ART had a significant mortality benefit. Deaths were most often caused by progression of cancer and not from another HIV-related or AIDS-related event.

Can palliative care integrated within HIV outpatient settings improve pain and symptom control in a low-income country? A prospective, longitudinal, controlled intervention evaluation

A high burden of pain, symptoms and other multidimensional problems persist alongside HIV treatment. WHO policy indicates palliative care as essential throughout the disease course. This study aimed to determine whether palliative care delivered from within an existing HIV outpatient setting improves control of pain and symptoms compared to standard care. A prospective, longitudinal controlled design compared patient outcomes at an outpatient facility that introduced palliative care training to clinicians and stocked essential palliative care drugs, to outcomes of a cohort of patients at a similar HIV care facility with no palliative care, in Tanzania. Inclusion criteria were clinically significant pain or symptoms. Patients were followed from baseline fortnightly until week 10 using validated self-report outcome measures. For the primary pain outcome, the required sample size of 120 patients was recruited. Odds of reporting pain reduced significantly more at intervention site (OR=0.60, 95% CI 0.50–0.72) than at control (OR=0.85, 95% CI 0.80–0.90), p=0.001. For secondary outcomes, longitudinal analysis revealed significant difference in slope between intervention and control, respectively: Medical Outcomes Study-HIV (MOS-HIV) physical score 1.46 vs. 0.54, p=0.002; MOS-HIV mental health 1.13 vs. 0.26, p=0.006; and POS total score 0.84 vs. 0.18, p=0.001. Neither baseline CD4 nor antiretroviral therapy (ART) use was associated with outcome scores. These data are the first to report outcomes evaluating integrated HIV outpatient palliative care in the presence of ART. The data offer substantive evidence to underpin the existing WHO clinical guidance that states an essential role for palliative care alongside HIV treatment, regardless of prognosis.

Perspectives on the Role of Patient-Centered Medical Homes in HIV Care

To strengthen the quality of HIV care and achieve improved clinical outcomes, payers, providers, and policymakers should encourage the use of patient-centered medical homes (PCMHs), building on the Ryan White CARE Act Program established in the 1990s. The rationale for a PCMH with HIV-specific expertise is rooted in clinical complexity, HIVs social context, and ongoing gaps in HIV care. Existing Ryan White HIV/AIDS Program clinicians are prime candidates to serve HIV PCMHs, and HIV-experienced community-based organizations can play an important role. Increasingly, state Medicaid programs are adopting a PCMH care model to improve access and quality to care. Stakeholders should consider several important areas for future action and research with regard to development of the HIV PCMH.

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 Presidents 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 programing 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.

2017 HIVMA of IDSA Clinical Practice Guideline for the Management of Chronic Pain in Patients Living With HIV

Pain has always been an important part of human immunodeficiency virus (HIV) disease and its experience for patients. In this guideline, we review the types of chronic pain commonly seen among persons living with HIV (PLWH) and review the limited evidence base for treatment of chronic noncancer pain in this population. We also review the management of chronic pain in special populations of PLWH, including persons with substance use and mental health disorders. Finally, a general review of possible pharmacokinetic interactions is included to assist the HIV clinician in the treatment of chronic pain in this population.It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgment with respect to particular patients or special clinical situations. The Infectious Diseases Society of American considers adherence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patients individual circumstances.

Know your CD4 campaign: 6-year outcomes from a quality improvement initiative to promote earlier initiation of antiretroviral therapy in Tanzania

Background: Late initiation of treatment for illness secondary to the human immunodeficiency virus (HIV) remains a major challenge in developing countries. Despite the World Health Organization (WHO) recommendation that treatment be initiated early in disease management, health providers conducting quality improvement monitoring in one region of Tanzania noted that common management practice relies upon clinical signs of advanced disease alone for initiation of combination antiretroviral therapy (ART). Although Tanzanian National Treatment Guidelines followed standard WHO recommendations, few patients initiated ART based on laboratory parameters. As a potential barrier to optimal patient outcomes, further investigation of this inconsistency led to recognition of challenges reflecting patient, healthcare staff, and laboratory levels that might inhibit the use of CD4 cell counts as the entryway to care. Materials and Methods: Using a quality improvement approach, investigations were pursued for six discrete activities of HIV care delivery with before and after measures of selected indicators. With respect to patient engagement, meetings and informal educational sessions were held to promote understanding of the meaning of and need for CD4 testing. For clinic staff: (1) Qualitative interviews were conducted with providers to understand why laboratory data was not being used and (2) on-site interviews were conducted with laboratory personnel to review beliefs, methods, and practices related to measurement of CD4 cells testing. A large scale local campaign was mounted to (1) educate and empower patients to recognize a need for CD4 information in management of their own care; (2) re-educate and encourage providers to use measured, rather than clinical observation alone to initiate ART; and (3) understand and resolve clinical and laboratory challenges. Based upon findings from the interviews: (1) Meetings with hospital administrations were effected to resolve institutional barriers to using CD4 cell testing. Specific on-site training was initiated for both providers, with regard to use of CD4 cell counts, and nurses, with advanced training to initiate routine CD4 testing. These activities were well received because all staff were able to review unlinked, site-based clinical data to appreciate gaps in a local care. Results: The number of CD4 samples obtained and recorded increased by 114% between May and October 2007 at targeted health facilities. ART enrollment increased by 62% between June and September 2007 without other significant change in care delivery. The median baseline CD4 at enrollment increased from 110 cells/mm 3 in June to 150 cells/mm 3 in September. Overall retention rate was 77% for 13,333 HIV patients enrolled in seven facilities. In September 2013, the cumulative 6-year overall retention rates are 77% for 53,040 patients enrolled in 42 health facilities in the region. Obstacles were addressed and community empowerment techniques used to stimulate change in established clinical behaviors. Conclusion: This Know your CD4 campaign initiative resulted in increased uptake of CD4 testing, treatment initiation and an unanticipated improvement in patient retention. With attention to patient, staff, and laboratory elements in resource-poor settings, decline in immune function and morbidity may be reduced and viral suppression prolonged. Empowering patients to be involved in their own care resulted in better overall adherence with HIV management. Local use of reviewed data can impact overall effectiveness of HIV care delivery. Simple quality improvement approaches impact sustainable change.

2017 HIV Medicine Association of Infectious Diseases Society of America Clinical Practice Guideline for the Management of Chronic Pain in Patients Living With Human Immunodeficiency Virus

Pain has always been an important part of human immunodeficiency virus (HIV) disease and its experience for patients. In this guideline, we review the types of chronic pain commonly seen among persons living with HIV (PLWH) and review the limited evidence base for treatment of chronic noncancer pain in this population. We also review the management of chronic pain in special populations of PLWH, including persons with substance use and mental health disorders. Finally, a general review of possible pharmacokinetic interactions is included to assist the HIV clinician in the treatment of chronic pain in this population.It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgment with respect to particular patients or special clinical situations. The Infectious Diseases Society of American considers adherence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patients individual circumstances.