Background:The need for palliative care in HIV management is underlined by the high prevalence of pain and symptoms, the toxicity, side effects, and virological failure associated with antiretroviral therapy, emergence of co-morbidities, continued high incidence of malignancies, late presentation of people with HIV disease, and the comparatively higher death rates among the infected individuals. Methods: A systematic review was undertaken to appraise the effect of models of palliative care on patient outcomes. A detailed search strategy was devised and biomedical databases searched using specific terms relevant to models of palliative care. Data from papers that met the inclusion criteria were extracted into common tables, and evidence independently graded using well described hierarchy of evidence. Results: 34 services met the inclusion criteria. Of these, 22 had been evaluated, and the evidence was graded as follows: grade 1 (n = 1); grade 2 (n = 2); grade 3 (n = 7); grade 4 (n = 1); qualitative (n = 6). Services were grouped as: home based care (n = 15); home palliative care/hospice at home (n = 7); hospice inpatient (n = 4); hospital inpatient palliative care (n = 4); specialist AIDS inpatient unit (n = 2); and hospital inpatient and outpatient care (n = 2). The evidence largely demonstrated that home palliative care and inpatient hospice care significantly improved patient outcomes in the domains of pain and symptom control, anxiety, insight, and spiritual wellbeing. Conclusions: Although the appraisal of evidence found improvements across domains, the current body of evidence suffers from a lack of (quasi) experimental methods and standardised measures. The specialism of palliative care is responding to the clinical evidence that integration into earlier disease stages is necessary. Further studies are needed to both identify feasible methods and evaluate the apparent beneficial effect of palliative care on patient outcomes in the post-HAART era.
Six hundred twenty-nine persons with cancer (PWC) selected from the Pennsylvania Cancer Registry plus 397 nonprofessional (support) persons involved in their care (SP) were interviewed to determine their views of the unmet psychological, social and economic needs of PWC. The most frequently mentioned unmet need was for help in dealing with emotional problems (estimated at 25% of PWC state-wide). Other unmet need estimates ranged from 14% for financial to 4% for transportation, with 59% of PWC reporting at least one unmet need. Characteristics of PWC reporting unmet needs included being younger, a history of emotional problems, a chronic illness in addition to cancer, more advanced stage at diagnosis, and a diagnosis of lung cancer. The percent of PWC and CP reporting unmet needs were very similar. These findings indicate that more effective screening for psychosocial problems and referral to supportive services is needed.
BackgroundIn response to increased global public health funding initiatives to HIV/AIDS care in Africa, this study aimed to describe practice models, strategies and challenges to delivering end-of-life care in sub-Saharan Africa.MethodsA survey end-of-life care programs was conducted, addressing the domains of service aims and configuration, barriers to pain control, governmental endorsement and strategies, funding, monitoring and evaluation, and research. Both closed and qualitative responses were sought.ResultsDespite great structural challenges, data from 48 programs in 14 countries with a mean annual funding of US $374,884 demonstrated integrated care delivery across diverse settings. Care was commonly integrated with all advanced disease care (67%) and disease stages (65% offering care from diagnosis). The majority (98%) provided home-based care for a mean of 301 patients. Ninety-four percent reported challenges in pain control (including availability, lack of trained providers, stigma and legal restrictions), and 77% addressed the effects of poverty on disease progression and management. Although 85% of programs reported Government endorsement, end-of-life and palliative care National strategies were largely absent.ConclusionsThe interdependent tasks of expanding pain control, balancing quality and coverage of care, providing technical assistance in monitoring and evaluation, collaborating between donor agencies and governments, and educating policy makers and program directors of end-of-life care are all necessary if resources are to reach their goals.
Self-reports of 32 symptoms and their treatments were obtained from patients of three palliative care programs that provide services to seriously ill HIV patients (>or=95% AIDS) in Alabama (n=47), Baltimore (n=91), and New York City (n=117). On average, patients reported 10.9 (SD=7.6) to 12.7 (SD=6.2) symptoms. Pain, lack of energy, and worrying were reported by a majority of patients at all sites, often with a high level of associated distress. For only four symptoms (pain, nausea, difficulty swallowing, and mouth sores) did half or more of patients at all sites experiencing the symptom also report treatment. Less than a third of patients experiencing 12 symptoms (five of six comprising a psychological subscale) reported treatment. Results show that despite the availability of more efficacious treatments, many HIV/AIDS patients continue to experience significant physical and psychological symptomatology. Many of those experiencing symptoms, however, do not perceive their symptoms as being treated.
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