Operating principles for running a clinical quality registry: are they feasible?

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.

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Towards a national perioperative clinical quality registry: The diagnostic accuracy of administrative data in identifying major postoperative complications

Anaesthesia and Intensive Care ◽

10.1177/0310057x20905606 ◽

2020 ◽

Vol 48 (3) ◽

pp. 203-212 ◽

Cited By ~ 1

Author(s):

Jennifer R Reilly ◽

Mark A Shulman ◽

Annie M Gilbert ◽

Bismi Jomon ◽

Robin J Thompson ◽

...

Keyword(s):

Postoperative Complications ◽

Administrative Data ◽

Clinical Audit ◽

Hospital Performance ◽

Clinical Quality ◽

Quality Registry ◽

Alfred Hospital ◽

Classification Of Diseases ◽

International Statistical Classification

Accurately measuring the incidence of major postoperative complications is essential for funding and reimbursement of healthcare providers, for internal and external benchmarking of hospital performance and for valid and reliable public reporting of outcomes. Actual or surrogate outcomes data are typically obtained by one of three methods: clinical quality registries, clinical audit, or administrative data. In 2017 a perioperative registry was developed at the Alfred Hospital and mapped to administrative and clinical data. This study investigated the statistical agreement between administrative data (International Statistical Classification of Diseases and Related Health Problems (10th edition) Australian Modification codes) and clinical audit by anaesthetists in identifying major postoperative complications. The study population included 482 high-risk surgical patients referred to the Alfred Hospital anaesthesia postoperative service over two years. Clinical audit was conducted to determine the presence of major complications and these data were compared to administrative data. The main outcome was statistical agreement between the two methods, as defined by Cohen’s kappa statistic. Substantial agreement was observed for five major complications, moderate agreement for three, fair agreement for six and poor agreement for two. Sensitivity and positive predictive value ranged from 0 to 100%. Specificity was above 90% for all complications. There was important variation in inter-rater agreement. For four of the five complications with substantial agreement between administrative data and clinical audit, sensitivity was only moderate (61.5%–75%). Using International Statistical Classification of Diseases and Related Health Problems (10th edition) Australian Modification codes to identify postoperative complications at our hospital has high specificity but is likely to underestimate the incidence compared to clinical audit. Further, retrospective clinical audit itself is not a highly reliable method of identifying complications. We believe a perioperative clinical quality registry is necessary to validly and reliably measure major postoperative complications in Australia for benchmarking of hospital performance and before public reporting of outcomes should be considered.

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

BMJ Open ◽

10.1136/bmjopen-2018-023723 ◽

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.

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

BMC Geriatrics ◽

10.1186/s12877-020-01741-2 ◽

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.

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

International Journal for Quality in Health Care ◽

10.1093/intqhc/mzaa145 ◽

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.

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