Patient Outcomes in Palliative Care, Report 13 (January - June 2012) - Western Australia

PCOC aims to assist services to improve the quality of the palliative care they provide through the analysis and benchmarking of patient outcomes. In this, the thirteenth PCOC report, data submitted for the January - June 2012 period are summarised and patient outcomes benchmarked to enable participating services to assess their performance and identify areas in which they may improve. This report is broken into four sections: Section 1 provides a summary of the data included in this report. Section 2 summarises each of the four outcome measures and presents national benchmarking results for a selection of these measures. Section 3 presents a more detailed analysis of the outcome measures and benchmarks. Section 4 provides descriptive analysis at each of the patient, episode and phase data levels. In each of the four sections, data and analysis for services in WA is presented alongside the national figures for comparative purposes. The national figures reflect all palliative care services who submitted data for the January - June 2012 period. A full list of these services can be found at www.pcoc.org.au The four outcome measures included in this report were first introduced in the reporting period January to June 2009 (Report 7). There is strong sectoral support for national benchmarks and a consensus that such benchmarks can drive service innovation regardless of model of care. Benchmarking provides opportunities to understand the services that are provided, the outcomes patients experience and also to generate research opportunities focused on how to demonstrate variations in practice and outcomes

The Return To Tax Simplification: an Econometric Analysis

This article provides estimates of the probable saving in the resource cost of complying with the tax law that would result from simplifying the individual Abstract income tax law. These estimates are based on an econometric analysis of the tax-filing behavior in 1982 of a sample of Minnesota taxpayers. A simple model of tax-compliance behavior based on utility maximization is first presented in order to suggest the important determinants of compliance behavior. The empirical model treats the discrete choices of whether to itemize deductions and whether to hire professional tax advice, and the choice of how much time and money to spend, conditional on the discrete choices made. Simulations based on the econometric results suggest that significant resource saving could be expected from eliminating the system of itemized deductions, although no significant saving from changing to a single-rate tax structure can be confidently predicted. Results suggest that the Tax Reform Act of 1986 will, in the long run, decrease the use ofprofessional tax assistance, but its net effect on the use of taxpayer's own time is unclear.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/68711/2/10.1177_109114218901700101.pd

Glaucoma Patients' Trust in the Physician

Objectives. To describe glaucoma patients' trust in the physician and to test the hypothesis that increased interpersonal trust is associated with increased medication adherence. Methods. One hundred ninety-five subjects with open-angle glaucoma seen by multiple glaucoma subspecialists participated in a cross-sectional patient survey and concomitant chart review which included a test of health literacy and the Trust in Physician Scale (TPS), a scale from 1–100, with 100 indicating greatest trust. Charts were reviewed for visual acuity and visual field results. Subjects' pharmacies were contacted to ascertain medication refill rates over the preceding six months. Results. TPS scores ranged from 57.5 to 100, 78.7 ± 8.4 (mean ± SD,) median 75.0. When age, race, gender, baseline visual acuity and visual field status, education level, and literacy status were considered, only race was associated with TPS. Caucasians expressed slightly higher levels of trust (n = 108; TPS 80.1 ± 8.2) than non-Caucasians, (n = 87 (82 Africans Americans); TPS 77.1 ± 8.4; P = .012). TPS score was not associated with refill rates (P = .190). Conclusions. Trust in physician is generally high in this group of glaucoma patients but varies slightly by race. Trust in physician was not associated with glaucoma medication adherence in this tertiary care population

Low prevalence of myocilin mutations in an African American population with primary open-angle glaucoma

Purpose Mutations in the myocilin gene (MYOC) are associated with primary open-angle glaucoma (POAG) in many different populations. This study represents the first large survey of MYOC mutations in an African American population. Methods: We recruited 529 African American subjects with POAG and 270 African American control subjects in this study. A complete eye examination and blood collection was performed in all study subjects. Genomic DNA was extracted. The entire coding sequence of MYOC was amplified and sequenced using the Sanger method. Identified MYOC variants were compared with previously reported MYOC mutations. Results: We identified a total of 29 MYOC variants including six potential MYOC mutations. Two mutations (Thr209Asn and Leu215Gln) are novel and are found only in cases and no controls. We also identified four previously reported MYOC mutations in cases and no controls (Tyr453MetfsX11, Gln368X, Thr377Met, and Ser393Arg). The overall frequency of glaucoma-causing MYOC mutations in our African American population with POAG was 1.4%. Conclusions: We identified two novel probable glaucoma-causing MYOC mutations (Thr209Asn and Leu215Gln). This study indicates that, despite the high prevalence of POAG, MYOC mutations are rare in the African American population

Addressing ethical challenges in the Genetics Substudy of the National Eye Survey of Trinidad and Tobago (GSNESTT).

BACKGROUND: The conduct of international collaborative genomics research raises distinct ethical challenges that require special consideration, especially if conducted in settings that are research-naïve or resource-limited. Although there is considerable literature on these issues, there is a dearth of literature chronicling approaches taken to address these issues in the field. Additionally no previous ethical guidelines have been developed to support similar research in Trinidad and Tobago. METHODS: A literature review was undertaken to identify strategies used to address common ethical issues relevant to human genetics and genomics research in research-naïve or resource-limited settings. Strategies identified were combined with novel approaches to develop a culturally appropriate, multifaceted strategy to address potential challenges in the Genetics Substudy of the National Eye Survey of Trinidad and Tobago (GSNESTT). RESULTS: Regarding the protection of study participants, we report a decision to exclude children as participants; the use of a Community Engagement and Sensitization Strategy to increase the genetic literacy of the target population; the involvement of local expertise to ensure cultural sensitivity and to address potential comprehension barriers in informed consent; and an audit of the informed consent process to ensure valid consent. Concerning the regulation of the research, we report on ethics approvals from relevant authorities; a Materials Transfer Agreement to guide sample ownership and export; and a Sample Governance Committee to oversee data use and data access. Finally regarding the protection of the interests of scientists from the host country, we report on capacity building efforts to ensure that local scientists have access to data collected through the project and appropriate recognition of their contributions in future publications. CONCLUSION: This paper outlines an ethical framework for the conduct of population-based genetics and genomics research in Trinidad and Tobago; highlights common issues arising in the field and strategies to address these