Perceived stigma in clinical settings may discourage HIV-infected individuals from accessing needed health care services. Having good access to care is imperative for maintaining the health, well being, and quality of life of persons living with HIV/AIDS (PLWHAs). The purpose of this prospective study, which took place from January 2004 through June 2006, was to evaluate the relationship between perceived stigma from a health care provider and access to care among 223 low income, HIV-infected individuals in Los Angeles County. Approximately one fourth of the sample reported perceived stigma from a health care provider at baseline, and about one fifth reported provider stigma at follow up. We also found that access to care among this population was low, as more than half of the respondents reported difficulty accessing care at baseline and follow up. Perceived stigma was found to be associated with low access to care both at baseline (odds ratio [OR] = 3.29; 95% confidence interval [CI] = 1.55, 7.01) and 6-month follow up (2.85; 95% CI = 1.06, 7.65), even after controlling for sociodemographic characteristics and most recent CD4 count. These findings are of particular importance because lack of access or delayed access to care may result in clinical presentation at more advanced stages of HIV disease. Interventions are needed to reduce perceived stigma in the health care setting. Educational programs and modeling of nonstigmatizing behavior can teach health care providers to provide unbiased care.
Summary BACKGROUND Plexiform neurofibromas (PN) are slow growing chemoradiotherapy resistant tumours arising in patients with neurofibromatosis type I (NF1). Currently there are no viable therapeutic options for patients whose life-threatening plexiform neurofibromas cannot be surgically removed due to proximity to vital body structures. Based on identification of molecular targets in genetic mouse models of human NF1 tumours, we hypothesized that the oral kinase inhibitor, imatinib mesylate, may be effective in targeted treatment of these chemoradiotherapy-refractory tumours. METHODS An open-label pilot Phase II clinical trial was designed to test whether treatment with imatinib mesylate can decrease volume burden of clinically significant plexiform neurofibromas in NF1 patients. The entry criteria require patients only to have NF1 and a clinically significant plexiform neurofibroma with the specified age limitations (age 3–65). Patients were treated with daily oral imatinib at 440 mg/m2/day for children and 800 mg/day for adults divided twice daily for 6 months. The primary endpoint measure of significant response was a 20% or more reduction in plexiform size by sequential volumetric MRI imaging. Clinical data was analyzed on an intent to treat basis, however to determine the activity of imatinib on NF1-related plexiform tumours, patients able to take imatinib for 6 months were evaluated for their response. Secondary outcomes included evaluation of safety of imatinib mesylate in this group of patients. The trial is registered at http://clinicaltrials.gov/; study number 0512-25. The trial currently is closed to enrollment, however there is a single patient that continues to respond and remains on study. FINDINGS On an intent to treat basis, 6 out of 36 patients or 17% (95% CI: 6 – 33%) experienced objective response to imatinib mesylate. In the evaluable study population of patients (n=23) who received drug for at least six months, six patients (26%; 95% CI: 10 – 48%) experienced ≥ 20% decrease in volume of one or more plexiform tumours and 30% of study patients had symptomatic improvement. We noted significant inter-patient and intra-patient heterogeneity of plexiform neurofibroma response. Toxicity of drug was comparable to previous reports in patients with chronic myelogenous leukemia. The most common adverse events were reversible skin rash (5 patients) and edema with weight gain (6 patients). More serious adverse events included reversible grade 3 neutropenia (2 patients) and grade 4 transaminitis (one patient). INTERPRETATION Imatinib mesylate caused disease regression in 26% of evaluable patients with clinically significant plexiform neurofibromas due to neurofibromatosis type 1. These results warrant confirmation in a larger multi-institutional clinical trial aimed at this patient population. These findings provide the first demonstration of radiographic volumetric tumour reduction in response to medical therapy in patients with NF1 plexiform neurofibromas using imatinib mesylate based on studies...
The aim of this study was to profile patients' satisfaction with information they have received about HAART in relation to treatment uptake. As part of a prospective investigation into uptake and adherence to HAART, 115 participants, comprising predominantly gay men, completed validated questionnaires investigating their satisfaction with information relating to practical aspects and potential problems of HAART, perceptions of information from different sources and beliefs about HAART, following a clinically recommended treatment offer. There was a wide range of total satisfaction scores indicating variation in patients' information requirements. Those who declined HAART were less satisfied with the information they had received than those who accepted the treatment recommendation (p < 0.05). Lower levels of satisfaction were associated with stronger concerns about the potential adverse effects of HAART (p < 0.05). Furthermore, concerns about HAART were related to uptake of HAART with those declining treatment being significantly more concerned about potential adverse effects than those who accepted the treatment offer (p < 0.001). The most helpful sources of information were specialist HIV staff: hospital consultants, pharmacists and nurses, as well as other people with HIV. This study improves our understanding of how information about HAART is perceived by people faced with treatment decisions. It emphasizes the importance of providing information tailored to meet the needs of individual patients and address their specific concerns, in order to support informed decision making.
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