scholarly journals Development of a binational thyroid cancer clinical quality registry: a protocol paper

BMJ Open ◽  
2019 ◽  
Vol 9 (1) ◽  
pp. e023723
Author(s):  
Liane J Ioannou ◽  
Jonathan Serpell ◽  
Joanne Dean ◽  
Cino Bendinelli ◽  
Jenny Gough ◽  
...  
Keyword(s):  
Thyroid Cancer ◽  
New Zealand ◽  
South Australia ◽  
Steering Committee ◽  
Population Based ◽  
Outcome Data ◽  
Term Outcome ◽  
Data Set ◽  
Clinical Quality ◽  
Quality Registry

IntroductionThe occurrence of thyroid cancer is increasing throughout the developed world and since the 1990s has become the fastest increasing malignancy. In 2014, a total of 2693 Australians and 302 New Zealanders were diagnosed with thyroid cancer, with this number projected to rise to 3650 in 2018. The purpose of this protocol is to establish a binational population-based clinical quality registry with the aim of monitoring and improving the quality of care provided to patients diagnosed with thyroid cancer in Australia and New Zealand.Methods and analysisThe Australian and New Zealand Thyroid Cancer Registry (ANZTCR) aims to capture clinical data for all patients over the age of 16 years with thyroid cancer, confirmed by histopathology report, who have been diagnosed, assessed or treated at a contributing hospital. A multidisciplinary steering committee was formed which, with operational support from Monash University, established the ANZTCR in early 2017. The pilot phase of the registry is currently operating in Victoria, New South Wales, Queensland, Western Australia and South Australia, with over 20 sites expected to come on board across Australia in 2018. A modified Delphi process was undertaken to determine the clinical quality indicators to be reported by the registry, and a minimum data set was developed comprising information regarding thyroid cancer diagnosis, pathology, surgery and 90-day follow-up.Future plansThe establishment of the ANZTCR provides the opportunity for Australia and New Zealand to further understand current practice in the treatment of thyroid cancer and identify variation in outcomes. The engagement of endocrine surgeons in supporting this initiative is crucial. While the pilot registry has a focus on early clinical outcomes, it is anticipated that future collection of longer term outcome data particularly for patients with poor prognostic disease will add significant further value to the registry.

scholarly journals Data quality audit of a clinical quality registry: a generic framework and case study of the Australian and New Zealand Hip Fracture Registry

2019 ◽  
Vol 8 (3) ◽  
pp. e000490 ◽  
Author(s):  
Aidan Christopher Tan ◽  
Elizabeth Armstrong ◽  
Jacqueline Close ◽  
Ian Andrew Harris
Keyword(s):  
Quality Improvement ◽  
New Zealand ◽  
Hip Fracture ◽  
Data Quality ◽  
Data Abstraction ◽  
Data Set ◽  
Clinical Quality ◽  
Data Completeness ◽  
Quality Registry ◽  
Generic Framework

ObjectivesThe value of a clinical quality registry is contingent on the quality of its data. This study aims to pilot methodology for data quality audits of the Australian and New Zealand Hip Fracture Registry, a clinical quality registry of hip fracture clinical care and secondary fracture prevention.MethodsA data quality audit was performed by independently replicating the data collection and entry process for 163 randomly selected patient records from three contributing hospitals, and then comparing the replicated data set to the registry data set. Data agreement, as a proxy indicator of data accuracy, and data completeness were assessed.ResultsAn overall data agreement of 82.3% and overall data completeness of 95.6% were found, reflecting a moderate level of data accuracy and a very high level of data completeness. Half of all data disagreements were caused by information discrepancies, a quarter by missing discrepancies and a quarter by time, date and number discrepancies. Transcription discrepancies only accounted for 1 in every 50 data disagreements. The sources of inaccurate and incomplete data have been identified with the intention of implementing data quality improvement.ConclusionsRegular audits of data abstraction are necessary to improve data quality, assure data validity and reliability and guarantee the integrity and credibility of registry outputs. A generic framework and model for data quality audits of clinical quality registries is proposed, consisting of a three-step data abstraction audit, registry coverage audit and four-step data quality improvement process. Factors to consider for data abstraction audits include: central, remote or local implementation; single-stage or multistage random sampling; absolute, proportional, combination or alternative sample size calculation; data quality indicators; regular or ad hoc frequency; and qualitative assessment.

scholarly journals Pilot for the Australian Breast Device Registry (ABDR): a national opt-out clinical quality registry for breast device surgery

BMJ Open ◽  
2017 ◽  
Vol 7 (12) ◽  
pp. e017778 ◽  
Author(s):  
Ingrid Hopper ◽  
Renee L Best ◽  
John J McNeil ◽  
Catherine M Mulvany ◽  
Colin C M Moore ◽  
...  
Keyword(s):  
Quality Indicators ◽  
Data Entry ◽  
Steering Committee ◽  
Population Based ◽  
Scientific Validity ◽  
Validity Data ◽  
Clinical Quality ◽  
Quality Registry ◽  
Opt Out ◽  
Minimum Dataset

PurposeTo establish a pilot clinical quality registry (CQR) to monitor the quality of care and device performance for breast device surgery in Australia.ParticipantsAll patients having breast device surgery from contributing hospitals in Australia. A literature review was performed which identified quality indicators for breast device surgery.Findings to dateA pilot CQR was established in 2011 to capture prospective data on breast device surgery. An interim Steering Committee and Management Committee were established to provide clinical governance, and guide quality indicator selection. The registry’s minimum dataset was formulated in consultation with stakeholder groups; potential quality indicators were assessed in terms of (1) importance and relevance, (2) usability, (3) feasibility to collect and (4) scientific validity. Data collection was by a two-sided paper-based form with manual data entry. Seven sites were recruited, including one public hospital, four private hospitals and two day surgeries. Patients were recruited and opt-out consent used.Future plansThe pilot breast device registry provides high-quality population-based data. It provides a model for developing a national CQR for breast devices; its minimum dataset and quality indicators reflect the opinions of the broad range of stakeholders. It is easily scalable, and has formed the basis for other international surgical groups establishing similar registries.

scholarly journals The protocol of a clinical quality registry for dementia and mild cognitive impairment (MCI): the Australian dementia network (ADNeT) Registry

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Xiaoping Lin ◽  
Kasey Wallis ◽  
Stephanie A. Ward ◽  
Henry Brodaty ◽  
Perminder S. Sachdev ◽  
...  
Keyword(s):  
Cognitive Impairment ◽  
Clinical Practice ◽  
Mild Cognitive Impairment ◽  
Patient Outcomes ◽  
Steering Committee ◽  
Primary Objective ◽  
Clinical Quality ◽  
Quality Registry ◽  
People With Dementia ◽  
Diagnosis Of Dementia

Abstract Background Dementia was identified as a priority area for the development of a Clinical Quality Registry (CQR) in Australia in 2016. The Australian Dementia Network (ADNeT) Registry is being established as part of the ADNeT initiative, with the primary objective of collecting data to monitor and enhance the quality of care and patient outcomes for people diagnosed with either dementia or Mild Cognitive Impairment (MCI). A secondary aim is to facilitate the recruitment of participants into dementia research and trials. This paper describes the Registry protocol. Methods The ADNeT Registry is a prospective CQR of patients newly diagnosed with either dementia or MCI. Eligible patients will be identified initially from memory clinics and individual medical specialists (e.g., geriatricians, psychiatrists and neurologists) involved in the diagnosis of dementia. Participants will be recruited using either an opt-out approach or waiver of consent based on three key determinants (capacity, person responsible, and communication of diagnosis). Data will be collected from four sources: participating sites, registry participants, carers, and linkage with administrative datasets. It is anticipated that the Registry will recruit approximately 10,000 participants by the end of 2023. The ADNeT registry will be developed and implemented to comply with the national operating principles for CQRs and governed by the ADNeT Registry Steering Committee. Discussion The ADNeT Registry will provide important data on current clinical practice in the diagnosis, treatment and care of people with dementia and MCI in Australia as well as long-term outcomes among these people. These data will help to identify variations in clinical practice and patient outcomes and reasons underlying these variations, which in turn, will inform the development of interventions to improve care and outcomes for people with dementia and MCI.

Measuring The Quality Of Cancer Care In The Barwon South Western Region, Victoria, Australia

2020 ◽  
Author(s):  
Leigh M Matheson ◽  
Graham Pitson ◽  
Cheng Hon Yap ◽  
Madhu Singh ◽  
Ian Collins ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Health Services ◽  
Quality Indicators ◽  
Cancer Care ◽  
Population Based ◽  
Western Region ◽  
Clinical Indicators ◽  
Clinical Quality ◽  
Quality Registry

ABSTRACT Objective The implementation of clinical quality indicators for monitoring cancer care in regional, rural and remote areas. Design Retrospective data from a population-based Clinical Quality Registry for lung, colorectal, and breast cancer. Setting All major Health Services in the Barwon South Western Region, Victoria, Australia. Participants All patients diagnosed with cancer presenting to a Health Service Intervention(s) Main Outcome Measures(s) Clinical Quality Indicators for Lung, Colorectal and Breast Cancer Results Clinical indicators included the following: discussion at multidisciplinary meetings, timeliness of care provided, type of care for different stages of the disease and survival outcomes. Many of the derived clinical indicator targets were reached. However, variation led to improvement in tumour stage being recorded in the medical record; improved awareness of the need for adjuvant chemotherapy for colorectal cancer; a reduction in time to treatment for lung cancer; reduced time to surgery for breast cancer; and highlighted the 30 day mortality post treatment for all of the tumour streams. Conclusions Clinical quality indicators allow for valuable insights into patterns of care, driving improvement in the quality of cancer care. These indicators are easily reproduced and may be of use to other cancer centres and health services.

scholarly journals A New Predictive Model for Breast Cancer Survival in New Zealand: Development, Internal and External Validation, and Comparison With the Nottingham Prognostic Index

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 227s-227s
Author(s):  
M. Elwood ◽  
S. Tin Tin ◽  
E. Tawfiq ◽  
R.J. Marshall ◽  
T.M. Phung ◽  
...  
Keyword(s):  
Breast Cancer ◽  
New Zealand ◽  
External Validity ◽  
External Validation ◽  
Prognostic Index ◽  
Population Based ◽  
Nottingham Prognostic Index ◽  
Data Set ◽  
Kaplan Meier ◽  
Internal And External Validity

Background: Women diagnosed with breast cancer, their doctors, and their families, would find a valid estimate of her prognosis helpful in planning treatment and support. Assessing prognosis is complex as many factors influence it. Several predictive models have been produced, but none has been developed or tested on patients in New Zealand (NZ). Aim: We aimed to develop and validate a NZ predictive model (NZPM) for breast cancer, and compare its performance to a widely used UK-developed model, the Nottingham Prognostic Index (NPI). Methods: We developed a model to predict 10-year breast cancer-specific survival, using data collected prospectively in the largest population-based breast cancer registry in NZ (Auckland, 9182 patients), and assessed its performance in this data set (internal validation) and in an independent NZ population-based series of 2625 patients in Waikato (external validation). The data included all women with primary invasive breast cancer diagnosed from 1 June 2000 to 30 June 2014, with follow-up to death or to 31 December 2014. We used multivariate Cox proportional hazards regression to assess predictors and to estimate the probability of breast cancer mortality within 10 years, and therefore 10-year survival, for each patient. We assessed observed survival by the Kaplan-Meier method. We assessed discrimination by the C-statistic, and calibration by comparing predicted and observed survival rates for patients in 10 groups ordered by predicted 10-year survival. We compared this NZPM with the NPI in the validation data set. Results: The final NZPM used continuous variables of age, tumor size, and number of positive lymph nodes, and categorical variables of ethnicity, tumor stage, tumor grade, ER and PR receptors, HER2 status, and histologic type of tumor. Discrimination was good: C-statistics were 0.84 for internal validity and 0.83 for independent external validity. For calibration, for both internal and external validity, the predicted 10-year survival probabilities in 10 groups of patients, ordered by predicted survival, were all within the 95% confidence intervals (CI) of the observed Kaplan-Meier survival probabilities. The NZPM showed good discrimination even within the prognostic groups defined by the NPI. Conclusion: These results for the NZPM show good internal and external validity, transportability, potential clinical value, and its clear superiority over the NPI. Further research will assess other potential predictors, other outcomes, performance in specific subgroups of patients, and compare the NZPM to other models, which have been developed in other countries and have not yet been tested in NZ.

scholarly journals Population-based analysis of the effect of a comprehensive, systematic change in an emergency medical service resource allocation plan on 24 hour mortality

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
John Tallon ◽  
Julie Wei ◽  
Lu Zheng ◽  
Ognjenka Djurdjev ◽  
George Papadopoulos ◽  
...  
Keyword(s):  
Resource Allocation ◽  
Interrupted Time Series ◽  
Population Based ◽  
Outcome Data ◽  
Considerable Change ◽  
Systematic Change ◽  
Main Stream ◽  
Special Schools ◽  
Data Set ◽  
Before And After

IntroductionThe British Columbia Emergency Health Services developed a new resource allocation plan (RAP) using an evidenced informed methodology and with further clinical input from EMS physicians, paramedics and allied EMS providers. Population-based analysis was used to determine the effect by comparing 24-hour mortality before and after province-wide implementation of the revised RAP. Objectives and ApproachThe primary outcome, 24-hour mortality, was obtained through linked provincial health administrative data. All adult cases with evaluable outcome data were included in the analysis. A pre and post methodology was used to evaluate the effect of post-RAP revision (post-RAP-revision) on 24-hour mortality compared to pre-RAP revision (pre-RAP-revision). Multivariable logistic regression was used to adjust for variations in other significant factors associated with 24-hour mortality. The interrupted time series (ITS) estimated any immediate changes in the level or trend of outcome after the start of the revised RAP implementation (fall of 2013), while simultaneously controlling for pre-existing trends. ResultsThe linked data set included some 1500–2000 children per school census classified as having a CP, representing a prevalence of some 0.3%. Provisionally, results show: prevalence of CP is higher amongst children living in relatively deprived areas; around 60% of CP children have a statement of SEN; the SEN type most commonly recorded for CP children with SEN is ‘Physical and medical difficulties’ and relatively high proportions have profound, multiple or severe learning difficulties; around 30% of CP children are educated in special schools; CP children in main stream (primary, middle and secondary) schools tended to miss more school sessions (~50% more) than other children and lower percentages achieved the expected levels at key stages 2 and 3 and the Level 2 GCSE threshold. Conclusion/ImplicationsOur results demonstrate that a comprehensive, evidence informed reconstruction of a provincial EMS RAP is feasible. Despite considerable change in crew level response and resource allocation, there was significant decrease in 24 hour mortality in a large pan-provincial population based patient cohort.

Predictors of short – and long-term clinical outcome in schizophrenic psychosis – the Northern Finland 1966 Birth Cohort study

2013 ◽  
Vol 28 (5) ◽  
pp. 263-268 ◽  
Author(s):  
P. Juola ◽  
J. Miettunen ◽  
J. Veijola ◽  
M. Isohanni ◽  
E. Jääskeläinen
Keyword(s):  
Clinical Practice ◽  
Clinical Outcome ◽  
Birth Cohort ◽  
Population Based ◽  
Outcome Data ◽  
Birth Cohort Study ◽  
Term Outcome ◽  
Long Term Outcome ◽  
Insidious Onset

AbstractObjective:Since the outcome in schizophrenia is heterogeneous and often poor, identification of specific predictors of outcome would be useful in clinical practice.Methods:Subjects with schizophrenic psychoses (n = 103) included in the Northern Finland 1966 Birth Cohort (n = 12,058), representing the general population, were followed-up for an average of 16.4 years. Predictor and outcome data were collected from the nationwide Finnish Hospital Discharge Register, hospital records and interviews.Results:Insidious onset of illness predicted a rehospitalization due to psychosis in the 2 years after the initial discharge. Being single, having an early onset, insidious onset, suicidal ideations upon the first admission, a rehospitalization and a high number of treatment days due to psychosis in the early stages of the illness all predicted a poorer clinical outcome in the longer term, after a minimum follow-up of 10 years.Conclusions:This population-based study indicates that clinical and sociodemographic factors around the onset of illness have significance for the long-term outcome in schizophrenia. These prognostic factors should be taken into account in clinical practice.

Thyroid cancer and its associated factors: A population‐based case‐control study

2021 ◽  
Author(s):  
Mohammad Taher Parad ◽  
Mohammad Fararouei ◽  
Ali Reza Mirahmadizadeh ◽  
Sima Afrashteh
Keyword(s):  
Thyroid Cancer ◽  
Associated Factors ◽  
Case Control Study ◽  
Population Based ◽  
Case Control ◽  
Control Study

scholarly journals A machine learning case–control classifier for schizophrenia based on DNA methylation in blood

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Chathura J. Gunasekara ◽  
Eilis Hannon ◽  
Harry MacKay ◽  
Cristian Coarfa ◽  
Andrew McQuillin ◽  
...  
Keyword(s):  
Dna Methylation ◽  
Population Based ◽  
Case Control ◽  
Training Data ◽  
Polygenic Risk Score ◽  
Reverse Causality ◽  
Cell Type Specificity ◽  
Data Set ◽  
Human Genomic ◽  
Genomic Regions

AbstractEpigenetic dysregulation is thought to contribute to the etiology of schizophrenia (SZ), but the cell type-specificity of DNA methylation makes population-based epigenetic studies of SZ challenging. To train an SZ case–control classifier based on DNA methylation in blood, therefore, we focused on human genomic regions of systemic interindividual epigenetic variation (CoRSIVs), a subset of which are represented on the Illumina Human Methylation 450K (HM450) array. HM450 DNA methylation data on whole blood of 414 SZ cases and 433 non-psychiatric controls were used as training data for a classification algorithm with built-in feature selection, sparse partial least squares discriminate analysis (SPLS-DA); application of SPLS-DA to HM450 data has not been previously reported. Using the first two SPLS-DA dimensions we calculated a “risk distance” to identify individuals with the highest probability of SZ. The model was then evaluated on an independent HM450 data set on 353 SZ cases and 322 non-psychiatric controls. Our CoRSIV-based model classified 303 individuals as cases with a positive predictive value (PPV) of 80%, far surpassing the performance of a model based on polygenic risk score (PRS). Importantly, risk distance (based on CoRSIV methylation) was not associated with medication use, arguing against reverse causality. Risk distance and PRS were positively correlated (Pearson r = 0.28, P = 1.28 × 10−12), and mediational analysis suggested that genetic effects on SZ are partially mediated by altered methylation at CoRSIVs. Our results indicate two innate dimensions of SZ risk: one based on genetic, and the other on systemic epigenetic variants.

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