Assessment of the Australian Rheumatology Association Database for national population health monitoring: working paper

This working paper uses the Australian Institute of Health and Welfare\u27s recently developed assessment framework to assess the suitability of the Australian Rheumatology Association Database as a potential new data source for population health monitoring of inflammatory arthritis. Summary A wide range of existing data sources could potentially be used to improve our understanding of arthritis in the Australian population. This working paper uses an assessment framework recently developed by the Australian Institute of Health and Welfare (AIHW) to assess the suitability of the Australian Rheumatology Association Database (ARAD) as a potential new data source for population health monitoring of inflammatory arthritis. More than 400,000 Australians have rheumatoid arthritis, the most common form of inflammatory arthritis. This auto-immune disease causes chronic inflammation, pain and swelling of the joints and can greatly reduce a person\u27s quality of life. The ARAD, managed by the Australian Rheumatology Association, is a national registry that collects health information from individuals with inflammatory arthritis. It was primarily established to monitor the benefits and safety of new treatments, particularly the biological disease-modifying anti-rheumatic drugs (bDMARDs). The AIHW\u27s assessment of the ARAD for the purpose of national population health monitoring is that: it has the potential to fill a range of identified data gaps in relation to key questions for monitoring arthritis, including treatment outcomes, disease progression, quality of life and economic impacts it has well established administrative and governance arrangements in place to ensure data quality and compliance with legislative requirements it has limited coverage which could potentially be improved by combining with, or linking to, other similar data sources on balance, it is a data source with the potential to provide useful information for population health monitoring of inflammatory arthritis, particularly if used in combination with, or linked to, other data sources

Development and Psychometric Properties of A Screening Tool for Assessing Developmental Coordination Disorder in Adults

Background: Developmental Coordination Disorder (DCD) is a neurodevelopmental disorder affecting motor coordination. Evidence suggests this disorder persists into adulthood and may be associated with biomechanical dysfunction and pain. We report on the development and initial validation of a questionnaire to assess for DCD in adults. Methods: An initial item pool (13 items) was derived from the American Psychiatric Association criteria and World Health Organisation definition for DCD. An expert panel assessed face and content validity which led to a 9-item Functional Difficulties Questionnaire (FDQ-9) with possible scores ranging from 9-36 (higher scores indicating greater functional difficulties). The FDQ-9 was piloted on individuals recruited from convenience samples. The underlying factor structure and aspects of reliability, validity and accuracy were tested. The Receiver Operating Characteristic Curve was employed to evaluate the diagnostic accuracy of the test using self-reported dyspraxia as the reference standard. Results: Principal Axis Factoring yielded a two factor solution relating to gross and fine motor skills; for conceptual parsimony these were combined. Internal reliability was high (0.81), the mean inter-item correlation was 0.51 and preliminary findings suggested satisfactory construct validity. The Area under the Curve was 0.918 [95% CI 0.84-1.00] indicating a diagnostic test with high accuracy. A cut-off score was established with a sensitivity and specificity of 86% [95% CI 78%-89%] and 81% [95 % CI 73%-89%] respectively. Test-retest reliability was good (ICC 0.96 [95% CI 0.92 to 0.98]. Conclusion: The psychometric properties of the FDQ-9 appear promising. Work is required to conduct further psychometric evaluations on new samples and apply the scale to clinical practice

Initial experiences in developing e-health solutions across Scotland

The MRC funded Virtual Organisations for Trials and Epidemiological Studies (VOTES) project is a collaborative effort between e-Science, clinical and ethical research centres across the UK including the universities of Oxford, Glasgow, Imperial, Nottingham and Leicester. The project started in September 2005 and is due to run for 3 years. The primary goal of VOTES is to develop a reusable Grid framework through which a multitude of clinical trials and epidemiological studies can be supported. The National e-Science Centre (NeSC) at the University of Glasgow are looking at developing the Scottish components of this framework. This paper presents the initial experiences in developing this framework and in accessing and using existing data sets, services and software across the NHS in Scotland

Quality Assessment of Healthcare Databases

The assessment of data quality and suitability plays an important role in improving the validity and generalisability of the results of studies based on secondary use of health databases. The availability of more and more updated and valid information on data quality and suitability provides data users and researchers an useful tool to optimize their activities. In this paper, we have summarized and synthesized the main aspects of Data Quality Assessment (DQA) applied in the field of secondary use of healthcare databases, with the aim of drawing attention to the critical aspects having to be considered and developed for improving the correct and effective use of secondary sources. Four developing features are identified: standardizing DQA methods, reporting DQA methods and results, synergy between data managers and data users, role of Institutions. Interdisciplinarity, multi-professionality and connection between government institutions, regulatory bodies, universities and the scientific community will provide the "toolbox" for i) developing standardized and shared DQA methods for health databases, ii) defining the best strategies for disseminating DQA information and results

Evidence-Based Health Care for Children: What Are We Missing?

Proposes a new framework for evaluating evidence in health care that takes into account interventions in child health promotion, which aim to change children's physical, social, or emotional environment and may take longer for the effects to show

Workplace screening programs for chronic disease prevention: a rapid review

This review examined the effectiveness of workplace screening programs for chronic disease prevention based on evidence retrieved from the main databases of biomedical and health economic literature published to March 2012, supplemented with relevant reports. The review found: 1. Strong evidence of effectiveness of HRAs (when used in combination with other interventions) in relation to tobacco use, alcohol use, dietary fat intake, blood pressure and cholesterol 2. Sufficient evidence for effectiveness of worksite programs to control overweight and obesity 3. Sufficient evidence of effectiveness for workplace HRAs in combination with additional interventions to have favourable impact on the use of healthcare services (such as reductions in emergency department visits, outpatient visits, and inpatient hospital days over the longer term) 4. Sufficient evidence for effectiveness of benefits-linked financial incentives in increasing HRA and program participation 5. Sufficient evidence that for every dollar invested in these programs an annual gain of $3.20 (range$1.40 to $4.60) can be achieved 6. Promising evidence that even higher returns on investment can be achieved in programs incorporating newer technologies such as telephone coaching of high risk individuals and benefits-linked financial incentive

Effects of Multidimensional Vs. Functional Health Literacy Educational Interventions on Standardized Patient-Nurse Interactions: A Feasibility Study

Background. Patients with limited health literacy (HL) are use fewer preventive services, access more emergent care and report poorer health outcomes than those with adequate literacy. Nurse have little consistent preparation to use HL competencies in practice, thus exacerbating risks for miscommunication and harm with patients of diverse literacy levels. Purpose. The purpose was crafting educational interventions to compare effects of two contrasting theoretical approaches on HL practice uptake including initial assessments of a HL competencies tool. Problem/Aims. For nine nurses and nursing faculty, did use of multidimensional versus functional HL educational strategies lead to changes in HL knowledge and HL- related behaviors in recorded standardized patient- nurse interactions? The four aims were to develop the Health Literacy Patient-Nurse Interaction Competencies Evaluation or HLP-NICE tool, craft two contrasting HL curricula and teaching approaches, evaluate intervention effects on HL knowledge and HL-related behaviors of participants, and then identify future research directions. Design/Theoretical Basis. A sequential mixed methods feasibility study design compared effects of the contrasting implementations on HL knowledge and HL-related behavior changes of the nine randomly assigned participants. Zarcadoolas, Pleasant & Greer’s multidimensional HL theoretical framework was integrated through HLP-NICE items and multidimensional teaching activities Procedures. Preliminary qualitative case study methodology shaped standardized patient, teacher and HLP-NICE development through individual cognitive, focus group and expert panel interviews. A quantitative two group between subjects design assessed study feasibility. HL experiences and changes in HL knowledge were based on the Health Literacy Knowledge and Experiences Survey or HLK-ES scores. Kalamazoo Essential Elements Communication Competencies-Adapted or KEECC-A and HLP-NICE ratings evaluated communication and HL-related behavior changes. Findings. HL knowledge did not increase overall for participants, nor was prior HL educational experience associated with HL knowledge gains. Increases in communication and HL-related behaviors were noted for both groups, although functional group gains were greater for KEECC-A communication ratings. Study implementation was feasible for enhancing short-term HL– related behavior changes although challenges existed in recruitment. Conclusions. Improving acceptability for participation, creating additional standardized HL training resources, enhancing educational strategies and strengthening HLP-NICE psychometric support is warranted to advance HL integration in nursing educational and clinical practice