scholarly journals Geographic distribution of hospice, homecare, and nursing home facilities and access to end-of-life care among persons living with HIV/AIDS in Appalachia

PLoS ONE ◽  
2020 ◽  
Vol 15 (12) ◽  
pp. e0243814
Author(s):  
Sadie P. Hutson ◽  
Ashley Golden ◽  
Agricola Odoi

Background Access to healthcare services, from diagnosis through end of life (EOL), is important among persons living with Human Immunodeficiency Syndrome (HIV) and Acquired Immunodeficiency Syndrome (AIDS) (PLWHA). However, little is known about the availability of hospice services in Appalachian areas. Therefore, the objective of this study is to describe the geographic distribution of hospice, homecare and nursing home facilities in order to demonstrate current existence of and access to resources for EOL care among PLWHA in the Appalachian regions of Tennessee and Alabama. Methods This paper reports on the second aim of a larger sequential, mixed methods qualitative-quantitative (qual→quan) study. Data from advance care planning (ACP) surveys were collected by both electronic (n = 28) and paper copies (n = 201) and, among other things, obtained information on zip codes of residence of PLWHA. This enabled assessment of the geographic distribution of residences of PLWHA in relation to the distribution of healthcare services such as hospice and home healthcare services. Hospice and Home Healthcare data were obtained from the Tennessee and Alabama Departments of Health. The street addresses of these facilities were used to geocode and map the geographic distributions of the facilities using Street Map USA. Travel times to Hospice and Home Healthcare facilities were computed and mapped using ArcGIS 10.3. Results We identified a total of 32 hospice and 69 home healthcare facilities in the Tennessee Appalachian region, while the Alabama Appalachian region had a total of 110 hospice and 86 home healthcare facilities. Most care facilities were located in urban centers. The distribution of care facilities was worse in Tennessee with many counties having no facilities, requiring up to an hour drive time to reach patients. A total of 86% of the PLWHA indicated preference to die at home. Conclusions Persons living with HIV/AIDS in Appalachia face a number of challenges at the end of life that make access to EOL services difficult. Although respondents indicated a preference to die at home, the hospice/homecare infrastructure and resources are overwhelmingly inadequate to meet this need. There is need to improve access to EOL care in the Appalachian regions of both Tennessee and Alabama although the need is greater in Tennessee.

2019 ◽  
Vol 71 (3) ◽  
pp. 525-531 ◽  
Author(s):  
Caleb Skipper ◽  
Mark R Schleiss ◽  
Ananta S Bangdiwala ◽  
Nelmary Hernandez-Alvarado ◽  
Kabanda Taseera ◽  
...  

Abstract Background Cryptococcal meningitis and tuberculosis are both important causes of death in persons with advanced human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS). Cytomegalovirus (CMV) viremia may be associated with increased mortality in persons living with HIV who have tuberculosis. It is unknown whether concurrent CMV viremia is associated with mortality in other AIDS-related opportunistic infections. Methods We prospectively enrolled Ugandans living with HIV who had cryptococcal meningitis from 2010–2012. Subsequently, we analyzed stored baseline plasma samples from 111 subjects for CMV DNA. We compared 10-week survival rates among those with and without CMV viremia. Results Of 111 participants, 52% (58/111) had detectable CMV DNA (median plasma viral load 498 IU/mL, interquartile range [IQR] 259–2390). All samples tested were positive on immunoglobin G serology. The median CD4+ T cell count was 19 cells/µL (IQR 9–70) and did not differ by the presence of CMV viremia (P = .47). The 10-week mortality rates were 40% (23/58) in those with CMV viremia and 21% (11/53) in those without CMV viremia (hazard ratio 2.19, 95% confidence interval [CI] 1.07–4.49; P = .03), which remained significant after a multivariate adjustment for known risk factors of mortality (adjusted hazard ratio 3.25, 95% CI 1.49–7.10; P = .003). Serum and cerebrospinal fluid cytokine levels were generally similar and cryptococcal antigen-specific immune stimulation responses did not differ between groups. Conclusions Half of persons with advanced AIDS and cryptococcal meningitis had detectable CMV viremia. CMV viremia was associated with an over 2-fold higher mortality rate. It remains unclear whether CMV viremia in severely immunocompromised persons with cryptococcal meningitis contributes directly to this mortality or may reflect an underlying immune dysfunction (ie, cause vs effect). Clinical Trials Registration NCT01075152.


Author(s):  
Peter A. Newman

AIDS (acquired immunodeficiency syndrome) is the most deadly epidemic of modern times. Since HIV (human immunodeficiency virus), the virus that causes AIDS, was first identified in the United States in 1981, nearly 1 million Americans have been diagnosed with AIDS and 530,756 have died. Forty million people are living with HIV worldwide. Although AIDS is still a fatal disease, new drug therapies have greatly slowed the course of disease progression and enhanced quality of life for persons living with HIV. Nevertheless, monumental disparities persist within the United States and between the developed and developing worlds in this two-tiered epidemic.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Mina Motamedi ◽  
Caitlin Brandenburg ◽  
Mina Bakhit ◽  
Zoe A. Michaleff ◽  
Loai Albarqouni ◽  
...  

Abstract Background Overtreatment in advanced age i.e. aggressive interventions that do not improve survival and are potentially harmful, can impair quality of care near the end of life (EOL). As healthcare provider perspectives on care quality may differ from that of service users, the aim of this study was to explore the views of older patients near EOL or their caregivers about the quality of health care at the EOL based on their lived experience, and to identify healthcare service improvements. Methods Medline and backward citation searches were conducted for qualitative or quantitative studies reported on the views of patients and/or informal caregivers about EOL care quality. Thematic analysis was used to summarise qualitative data (primary analysis); narrative and tabulations were used to summarise quantitative data (secondary analysis). Results Thirty articles met the inclusion criteria. Five main qualitative themes regarding quality care emerged: (1) Effective communication between clinicians and patients/caregivers; (2) Healthcare that values patient preferences and shared decision making; (3) Models of care that support quality of life and death with dignity; (4) Healthcare services that meet patient expectations; and (5) Support for informal caregivers in dealing with EOL challenges. The quantitative articles supported various aspects of the thematic framework. Conclusion The findings of this study show that many of the issues highlighted by patients or bereaved relatives have persisted over the past two decades. There is an urgent need for comprehensive evaluation of care across the healthcare system and targeted redesign of existing EOL care pathways to ensure that care aligns with what patients and informal caregivers consider high-quality patient-centred care at the EOL.


2021 ◽  
Vol 11 (9) ◽  
pp. 79-82
Author(s):  
Zailatul Hani Mohamad Yadzir ◽  
Mazliza Ramly ◽  
Anita Suleiman

Background: Treatment literacy is a significant factor in the management of health and care of people living with HIV (PLHIV). Therefore, the aim of this study was to determine the level of treatment literacy among PLHIV in selected government facilities. Methods: A cross-sectional study was undertaken from July to August 2020 in five government hospitals and six government health clinics in Malaysia. A validated self-administered questionnaire encompassing six items about treatment literacy was used to assess the knowledge of PLHIV. This survey was conducted via web-based platform. Results: Overall, 1173 PLHIV participated in this study. The major finding in this study was that 90.0% of PLHIV were currently on treatment and aware of their antiretroviral therapy (ART) regime. Majority of PLHIV (74.0%) also stated that they know the frequency of receiving their viral load test. Conclusion: The study found a high level of treatment literacy among PLHIV in selected government facilities in Malaysia. Key words: Human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS), people living with HIV (PLHIV), antiretroviral therapy (ART)


2021 ◽  
pp. 095646242110516
Author(s):  
Souradet Y Shaw ◽  
Laurie Ireland ◽  
Leigh M McClarty ◽  
Carla Loeppky ◽  
Jared Bullard ◽  
...  

Background Understanding care patterns of persons living with HIV prior to diagnosis can inform prevention opportunities, earlier diagnosis, and engagement strategies. We examined healthcare utilization among HIV-positive individuals and compared them to HIV-negative controls. Methods Data were from a retrospective cohort from Manitoba, Canada. Participants included individuals living with HIV presenting to care between 2007 and 2011, and HIV-negative controls, matched (1:5) by age, sex, and region. Data from population-based administrative databases included physician visits, hospitalizations, drug dispensation, and chlamydia and gonorrhea testing. Diagnoses associated with physician visits were classified according to International Classification of Diseases chapters. Conditional logistic regression models were used to compare cases/controls, with adjusted odds ratios (AORs) and their 95% confidence intervals (95% CI) reported. Results A total of 193 cases and 965 controls were included. Physician visits and hospitalizations were higher for cases, compared to controls. In the 2 years prior to case date, cases were more likely to be diagnosed with “blood disorders” (AOR: 4.2, 95% CI: 2.0–9.0), be treated for mood disorders (AOR: 2.4, 95% CI: 1.6–3.4), and to have 1+ visits to a hospital (AOR: 2.2, 95% CI: 1.4–3.6). Conclusion Opportunities exist for prevention, screening, and earlier diagnosis. There is a need for better integration of healthcare services with public health.


2019 ◽  
Author(s):  
Jenevieve Opoku ◽  
Rupali K Doshi ◽  
Amanda D Castel ◽  
Ian Sorensen ◽  
Michael Horberg ◽  
...  

BACKGROUND HIV cohort studies have been used to assess health outcomes and inform the care and treatment of people living with HIV disease. However, there may be similarities and differences between cohort participants and the general population from which they are drawn. OBJECTIVE The objective of this analysis was to compare people living with HIV who have and have not been enrolled in the DC Cohort study and assess whether participants are a representative citywide sample of people living with HIV in the District of Columbia (DC). METHODS Data from the DC Health (DCDOH) HIV surveillance system and the DC Cohort study were matched to identify people living with HIV who were DC residents and had consented for the study by the end of 2016. Analysis was performed to identify differences between DC Cohort and noncohort participants by demographics and comorbid conditions. HIV disease stage, receipt of care, and viral suppression were evaluated. Adjusted logistic regression assessed correlates of health outcomes between the two groups. RESULTS There were 12,964 known people living with HIV in DC at the end of 2016, of which 40.1% were DC Cohort participants. Compared with nonparticipants, participants were less likely to be male (68.0% vs 74.9%, <i>P</i>&lt;.001) but more likely to be black (82.3% vs 69.5%, <i>P</i>&lt;.001) and have a heterosexual contact HIV transmission risk (30.3% vs 25.9%, <i>P</i>&lt;.001). DC Cohort participants were also more likely to have ever been diagnosed with stage 3 HIV disease (59.6% vs 47.0%, <i>P</i>&lt;.001), have a CD4 &lt;200 cells/µL in 2017 (6.2% vs 4.6%, <i>P</i>&lt;.001), be retained in any HIV care in 2017 (72.9% vs 59.4%, <i>P</i>&lt;.001), and be virally suppressed in 2017. After adjusting for demographics, DC Cohort participants were significantly more likely to have received care in 2017 (adjusted odds ratio 1.8, 95% CI 1.70-2.00) and to have ever been virally suppressed (adjusted odds ratio 1.3, 95% CI 1.20-1.40). CONCLUSIONS These data have important implications when assessing the representativeness of patients enrolled in clinic-based cohorts compared with the DC-area general HIV population. As participants continue to enroll in the DC Cohort study, ongoing assessment of representativeness will be required.


2021 ◽  
Author(s):  
Ai Chikada ◽  
Sayaka Takenouchi ◽  
Yoshiki Arakawa ◽  
Kazuko Nin

Abstract Background End-of-life discussions (EOLDs) in patients with high-grade glioma (HGG) have not been well described. Therefore, this study examined the appropriateness of timing and the extent of patient involvement in EOLDs and their impact on HGG patients. Methods A cross-sectional survey was conducted among 105 bereaved families of HGG patients at a university hospital in Japan between July and August 2019. Fisher’s exact test and the Wilcoxon rank-sum test were used to assess the association between patient participation in EOLDs and their outcomes. Results In total, 77 questionnaires were returned (response rate 73%), of which 20 respondents replied with refusal documents. Overall, 31/57 (54%) participated in EOLDs at least once in acute hospital settings, and a significant difference was observed between participating and nonparticipating groups in communicating the patient’s wishes for EOL care to the family (48% vs 8%, P = .001). Moreover, &gt;80% of respondents indicated that the initiation of EOLDs during the early diagnosis period with patients and families was appropriate. Most EOLDs were provided by neurosurgeons (96%), and other health care providers rarely participated. Additionally, patient goals and priorities were discussed in only 28% of the EOLDs. Patient participation in EOLDs was not associated with the quality of EOL care and a good death. Conclusions Although participation in EOLDs is relatively challenging for HGG patients, this study showed that participation in EOLDs may enable patients to express their wishes regarding EOL care. It is important to initiate EOLDs early on through an interdisciplinary team approach while respecting patient goals and priorities.


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