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2. Knowledge and insights from a maturing international clinical quality registry.

Author

Sampurno, Fanny, Kowalski, Christoph, Connor, Sarah E, Nguyen, Anissa V, Acuña, Àngels Pont, Ng, Chi-Fai, Foster, Claire, Feick, Günter, Boronat, Olatz Garin, Dieng, Sebastian, Brglevska, Silvana, Ferrante, Stephanie, Leung, Steven, Villanti, Paul, Moore, Caroline M, Graham, Ian D, Millar, Jeremy L, Litwin, Mark S, and Papa, Nathan

Subjects
Cancer, Health and social care services research, 8.1 Organisation and delivery of services, Benchmarking, Delivery of Health Care, Humans, Male, Registries, international clinical quality registry, process evaluation, collaborative working group, documentation, audit and feedback, shared-learning, Information and Computing Sciences, Engineering, Medical and Health Sciences, Medical Informatics
Abstract

Since 2017, the TrueNTH Global Registry (TNGR) has aimed to drive improvement in patient outcomes for individuals with localized prostate cancer by collating data from healthcare institutions across 13 countries. As TNGR matures, a systematic evaluation of existing processes and documents is necessary to evaluate whether the registry is operating as intended. The main supporting documents: protocol and data dictionary, were comprehensively reviewed in a series of meetings over a 10-month period by an international working group. In parallel, individual consultations with local institutions regarding a benchmarking quality-of-care report were conducted. Four consensus areas for improvement emerged: updating operational definitions, appraisal of the recruitment process, refinement of data elements, and improvement of data quality and reporting. Recommendations presented were drawn from our collective experience and accumulated knowledge in operating an international registry. These can be readily generalized to other health-related reporting programs beyond clinical registries.

Published
2022

4. Establishing a global quality of care benchmark report

Author

Sampurno, Fanny, Cally, Justin, Opie, Jacinta L, Kannan, Ashwini, Millar, Jeremy L, Finelli, Antonio, Vickers, Andrew J, Moore, Caroline M, Kowalski, Christoph, Foster, Claire, Barocas, Dan A, Galvin, David, Van Basten, Jean-Paul, Gore, John L, Ferencz, Julia, Lawson, Keith A, Ghani, Khurshid R, Kwan, Lorna, Saarela, Olli, Connor, Sarah E, Dieng, Sebastian, Linsell, Susan, Soeterik, Timo FW, Villanti, Paul, Litwin, Mark S, and Evans, Sue M

Subjects
Health Services and Systems, Health Sciences, Generic health relevance, Benchmarking, Delivery of Health Care, Humans, Male, Quality Indicators, Health Care, Registries, Surveys and Questionnaires, international registry, benchmarking, data display, data science, quality indicators, R Markdown, Information Systems, Library and Information Studies, Medical Informatics, Health services and systems, Applied computing
Abstract

BackgroundThe Movember funded TrueNTH Global Registry (TNGR) aims to improve care by collecting and analysing a consistent dataset to identify variation in disease management, benchmark care delivery in accordance with best practice guidelines and provide this information to those in a position to enact change. We discuss considerations of designing and implementing a quality of care report for TNGR.MethodsEleven working group sessions were held prior to and as reports were being built with representation from clinicians, data managers and investigators contributing to TNGR. The aim of the meetings was to understand current data display approaches, share literature review findings and ideas for innovative approaches. Preferred displays were evaluated with two surveys (survey 1: 5 clinicians and 5 non-clinicians, 83% response rate; survey 2: 17 clinicians and 18 non-clinicians, 93% response rate).ResultsConsensus on dashboard design and three data-display preferences were achieved. The dashboard comprised two performance summary charts; one summarising site's relative quality indicator (QI) performance and another to summarise data quality. Binary outcome QIs were presented as funnel plots. Patient-reported outcome measures of function score and the extent to which men were bothered by their symptoms were presented in bubble plots. Time series graphs were seen as providing important information to supplement funnel and bubble plots. R Markdown was selected as the software program principally because of its excellent analytic and graph display capacity, open source licensing model and the large global community sharing program code enhancements.ConclusionsInternational collaboration in creating and maintaining clinical quality registries has allowed benchmarking of process and outcome measures on a large scale. A registry report system was developed with stakeholder engagement to produce dynamic reports that provide user-specific feedback to 132 participating sites across 13 countries.

Published
2021

7. Out of the blue

Author

Millar, Jeremy, Davidson, Ange, and Audige, Laurent

Published
1992

19. The impact of delayed diagnosis and treatment due to COVID-19 on Australian thyroid cancer patients: a qualitative interview study

Author

D'souza, Bianka, primary, Glover, Anthony, additional, Bavor, Claire, additional, Brown, Benjamin, additional, Dodd, Rachael H, additional, Lee, James C, additional, Millar, Jeremy, additional, Miller, Julie A, additional, Zalcberg, John R, additional, Serpell, Jonathan, additional, Ioannou, Liane J, additional, and Nickel, Brooke, additional

Published
2024
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22. Cohort profile: the TrueNTH Global Registry - an international registry to monitor and improve localised prostate cancer health outcomes.

Author

Evans, Sue M, Millar, Jeremy L, Moore, Caroline M, Lewis, John D, Huland, Hartwig, Sampurno, Fanny, Connor, Sarah E, Villanti, Paul, and Litwin, Mark S

Subjects
Humans, Prostatic Neoplasms, Data Collection, Registries, International Cooperation, Quality Indicators, Health Care, Male, Outcome Assessment, Health Care, international health services, prostate disease, quality in health care, Outcome Assessment, Quality Indicators, Health Care, Clinical Sciences, Public Health and Health Services, Other Medical and Health Sciences
Abstract

PurposeGlobally, prostate cancer treatment and outcomes for men vary according to where they live, their race and the care they receive. The TrueNTH Global Registry project was established as an international registry monitoring care provided to men with localised prostate cancer (CaP).ParticipantsSites with existing CaP databases in Movember fundraising countries were invited to participate in the international registry. In total, 25 Local Data Centres (LDCs) representing 113 participating sites across 13 countries have nominated to contribute to the project. It will collect a dataset based on the International Consortium for Health Outcome Measures (ICHOM) standardised dataset for localised CaP.Findings to dateA governance strategy has been developed to oversee registry operation, including transmission of reversibly anonymised data. LDCs are represented on the Project Steering Committee, reporting to an Executive Committee. A Project Coordination Centre and Data Coordination Centre (DCC) have been established. A project was undertaken to compare existing datasets, understand capacity at project commencement (baseline) to collect the ICHOM dataset and assist in determining the final data dictionary. 21/25 LDCs provided data dictionaries for review. Some ICHOM data fields were well collected (diagnosis, treatment start dates) and others poorly collected (complications, comorbidities). 17/94 (18%) ICHOM data fields were relegated to non-mandatory fields due to poor capture by most existing registries. Participating sites will transmit data through a web interface biannually to the DCC.Future plansRecruitment to the TrueNTH Global Registry-PCOR project will commence in late 2017 with sites progressively contributing reversibly anonymised data following ethical review in local regions. Researchers will have capacity to source deidentified data after the establishment phase. Quality indicators are to be established through a modified Delphi approach in later 2017, and it is anticipated that reports on performance against quality indicators will be provided to LDCs.

Published
2017

24. Co-designing an online treatment decision aid for men with low-risk prostate cancer: Navigate

Author

Schofield, Penelope, Hyatt, Amelia, White, Alan, White, Fiona, Frydenberg, Mark, Chambers, Suzanne, Gardiner, Robert, Murphy, Declan G., Cavedon, Lawrence, Millar, Jeremy, Richards, Natalie, Murphy, Barbara, Juraskova, Ilona, Schofield, Penelope, Hyatt, Amelia, White, Alan, White, Fiona, Frydenberg, Mark, Chambers, Suzanne, Gardiner, Robert, Murphy, Declan G., Cavedon, Lawrence, Millar, Jeremy, Richards, Natalie, Murphy, Barbara, and Juraskova, Ilona

Abstract

Objectives: To develop an online treatment decision aid (OTDA) to assist patients with low-risk prostate cancer (LRPC) and their partners in making treatment decisions. Patients and methods: Navigate, an OTDA for LRPC, was rigorously co-designed by patients with a confirmed diagnosis or at risk of LRPC and their partners, clinicians, researchers and website designers/developers. A theoretical model guided the development process. A mixed methods approach was used incorporating (1) evidence for essential design elements for OTDAs; (2) evidence for treatment options for LRPC; (3) an iterative co-design process involving stakeholder workshops and prototype review; and (4) expert rating using the International Patient Decision Aid Standards (IPDAS). Three co-design workshops with potential users (n = 12) and research and web-design team members (n = 10) were conducted. Results from each workshop informed OTDA modifications to the OTDA for testing in the subsequent workshop. Clinician (n = 6) and consumer (n = 9) feedback on usability and content on the penultimate version was collected. Results: The initial workshops identified key content and design features that were incorporated into the draft OTDA, re-workshopped and incorporated into the penultimate OTDA. Expert feedback on usability and content was also incorporated into the final OTDA. The final OTDA was deemed comprehensive, clear and appropriate and met all IPDAS criteria. Conclusion: Navigate is an interactive and acceptable OTDA for Australian men with LRPC designed by men for men using a co-design methodology. The effectiveness of Navigate in assisting patient decision-making is currently being assessed in a randomised controlled trial with patients with LRPC and their partners.

Published
2024

25. Adjuvant radiotherapy versus early salvage radiotherapy following radical prostatectomy (TROG 08.03/ANZUP RAVES): a randomised, controlled, phase 3, non-inferiority trial

Author

Kneebone, Andrew, Fraser-Browne, Carol, Duchesne, Gillian M, Fisher, Richard, Frydenberg, Mark, Herschtal, Alan, Williams, Scott G, Brown, Chris, Delprado, Warick, Haworth, Annette, Joseph, David J, Martin, Jarad M, Matthews, John H L, Millar, Jeremy L, Sidhom, Mark, Spry, Nigel, Tang, Colin I, Turner, Sandra, Wiltshire, Kirsty L, Woo, Henry H, Davis, Ian D, Lim, Tee S, and Pearse, Maria

Published
2020
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27. Prostate-Specific Antigen Response to Androgen Deprivation Therapy in the Neoadjuvant Setting for High-risk Prostate Adenocarcinoma (PIRANHA): Pooled Analysis of Two Randomized Clinical Trials

Author

Nikitas, John, primary, Ong, Wee Loon, additional, Carrier, Nathalie, additional, Romero, Tahmineh, additional, Millar, Jeremy, additional, Steinberg, Michael L., additional, Rettig, Matthew B., additional, Boutros, Paul C., additional, Reiter, Robert, additional, Nickols, Nicholas G., additional, Valle, Luca, additional, McGuire, Sean E., additional, Spratt, Daniel E., additional, Souhami, Luis, additional, Roy, Soumyajit, additional, Martin, Jarad M., additional, Joseph, David, additional, Nabid, Abdenour, additional, and Kishan, Amar U., additional

Published
2023
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32. Incident Chronic Kidney Disease After Radical Nephrectomy for Renal Cell Carcinoma

Author

Giles, Graham, White, Victoria, Coory, Michael, Millar, Jeremy, Bolton, Damien, Davis, Ian, Winship, Ingrid, Roos, Ian, Southey, Melissa, Severi, Gianlucca, Prince, Miles, Harrison, Simon, Seymour, John, Jefford, Michael, Hill, David, Kay, Anne, Ellis, Robert J., White, Victoria M., Bolton, Damien M., Coory, Michael D., Davis, Ian D., Francis, Ross S., Giles, Graham G., Gobe, Glenda C., Marco, David J.T., Neale, Rachel E., Wood, Simon T., and Jordan, Susan J.

Published
2019
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34. Management and outcomes of glioblastoma: 20‐year experience in a single Australian institution.

Author

Lenffer, Bianca, Ruben, Jeremy, Senthi, Sashendra, Millar, Jeremy, and Ong, Wee Loon

Subjects
GLIOBLASTOMA multiforme, RADIOTHERAPY, SURVIVAL rate, SURGICAL excision, OVERALL survival
Abstract

Introduction: We aimed to evaluate the changing patterns in the management of glioblastoma (GBM) and impact on survival outcomes over a 20‐year period. Methods: This is a retrospective study of patients diagnosed with GBM between 2001 and 2020, who had radiation therapy (RT) in an Australian institution. The primary outcomes were changes in treatment modalities (including surgery, RT, and chemotherapy) over time and overall survival (OS). Multivariable Cox regressions were used to evaluate factors associated with OS, including age, sex, ECOG performance status, treatment modalities, treatment facility, and year of treatment. Results: 1079 patients were included in this study. Thirty‐five per cent of patients had gross total resection, increasing from 31% in 2001–2005 to 45% in 2016–2020 (P < 0.001). Sixty‐four per cent of patients had ≥60 Gy RT, increasing from 57% in 2001–2005 to 66% in 2016–2020 (P < 0.001). Seventy‐five per cent of patients had chemotherapy, increasing from 22% in 2001–2005 to 89% in 2016–2020 (P < 0.001). Treatment received varied based on patients' age and ECOG performance status. The median OS for the entire cohort was 13.0 months (95% CI = 12.0–13.7). Median OS in patients who had maximal treatment (i.e., gross total resection, ≥60 Gy RT and chemotherapy) was 20.6 months (95% CI = 17.3–22.8). In multivariable analyses, age, sex, treatment facility, extent of surgical resection, RT dose, and chemotherapy use were associated with OS. Conclusion: This is one of the largest Australian series on the management and outcomes of GBM spanning a 20‐year period. We observed improvement in OS over time, which is likely associated with evolving treatment options over the study period. [ABSTRACT FROM AUTHOR]

Published
2024
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36. Disease mapping: Geographic differences in population rates of interventional treatment for prostate cancer in Australia

Author

Cameron, Jessica K., primary, Chandrasiri, Upeksha, additional, Millar, Jeremy, additional, Aitken, Joanne F., additional, Cramb, Susanna, additional, Dunn, Jeff, additional, Frydenberg, Mark, additional, Rashid, Prem, additional, Mengersen, Kerrie, additional, Chambers, Suzanne K., additional, Baade, Peter D., additional, and Smith, David P., additional

Published
2023
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39. Long-Term Quality-of-Life Outcomes After Prostate Radiation Therapy With or Without High-Dose-Rate Brachytherapy Boost: Post Hoc Analysis of TROG 03.04 RADAR

Author

Ong, Wee Loon, primary, Nikitas, John, additional, Joseph, David, additional, Steigler, Allison, additional, Millar, Jeremy, additional, Valle, Luca, additional, Steinberg, Michael L., additional, Ma, Ting Martin, additional, Reiter, Robert E., additional, Rettig, Matthew B., additional, Nickols, Nicholas G., additional, Chang, Albert, additional, Zaorsky, Nicholas G., additional, Spratt, Daniel E., additional, Romero, Tahmineh, additional, and Kishan, Amar U., additional

Published
2023
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40. Barriers and enablers of active surveillance for prostate cancer: a qualitive study of clinicians

Author

Pattenden, Trent A., primary, Thangasamy, Isaac A., additional, Ong, Wee Loon, additional, Samaranayke, Dhanika, additional, Morton, Andrew, additional, Murphy, Declan G., additional, Evans, Sue, additional, Millar, Jeremy, additional, Chalasani, Venu, additional, Rashid, Prem, additional, Winter, Matthew, additional, Vela, Ian, additional, Pryor, David, additional, Mark, Stephen, additional, Loeb, Stacy, additional, Lawrentschuk, Nathan, additional, and Pritchard, Elizabeth, additional

Published
2023
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41. 34 Testosterone Recovery Following Androgen Suppression and Prostate Radiotherapy (Transport) - Updated Analyses from the MARCAP Consortium

Author

Ong, Wee Loon, primary, Wilhalme, Holly, additional, Millar, Jeremy, additional, Steigler, Allison, additional, Denham, James, additional, Joseph, David, additional, Roy, Soumyajit, additional, Malone, Shawn, additional, Nickols, Nicholas, additional, Rettig, Matthew, additional, Valle, Luca, additional, Steinberg, Michael, additional, Sun, Yilun, additional, Zaorsky, Nicholas, additional, Spratt, Daniel, additional, Souhami, Luis, additional, Carrier, Nathalie, additional, Nabid, Abdenour, additional, and Kishan, Amar U., additional

Published
2023
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43. Prostate-Specific Antigen Response to Androgen Deprivation Therapy in the Neoadjuvant Setting for High-Risk Prostate Adenocarcinoma (PIRANHA): Pooled Analysis of Two Randomized Clinical Trials

Author

Nikitas, John, Ong, Wee Loon, Carrier, Nathalie, Romero, Tahmineh, Millar, Jeremy, Steinberg, Michael L., Rettig, Matthew B., Boutros, Paul C., Reiter, Robert, Nickols, Nicholas G., Valle, Luca, McGuire, Sean E., Spratt, Daniel E., Souhami, Luis, Roy, Soumyajit, Martin, Jarad M., Joseph, David, Nabid, Abdenour, and Kishan, Amar U.

Published
2024
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47. Development of Indicators to Assess Quality of Care for Prostate Cancer

Author

Nag, Nupur, Millar, Jeremy, Davis, Ian D., Costello, Shaun, Duthie, James B., Mark, Stephen, Delprado, Warick, Smith, David, Pryor, David, Galvin, David, Sullivan, Frank, Murphy, Áine C., Roder, David, Elsaleh, Hany, Currow, David, White, Craig, Skala, Marketa, Moretti, Kim L., Walker, Tony, De Ieso, Paolo, Brooks, Andrew, Heathcote, Peter, Frydenberg, Mark, Thavaseelan, Jeffery, and Evans, Sue M.

Published
2018
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50. Co‐designing an online treatment decision aid for men with low‐risk prostate cancer: Navigate

Author

Schofield, Penelope, primary, Hyatt, Amelia, additional, White, Alan, additional, White, Fiona, additional, Frydenberg, Mark, additional, Chambers, Suzanne, additional, Gardiner, Robert, additional, Murphy, Declan G., additional, Cavedon, Lawrence, additional, Millar, Jeremy, additional, Richards, Natalie, additional, Murphy, Barbara, additional, and Juraskova, Ilona, additional

Published
2023
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