Using linked routinely collected health data to describe prostate cancer treatment in New South Wales, Australia: a validation study

<p>Abstract</p> <p>Background</p> <p>Population-based patterns of care studies are important for monitoring cancer care but conducting them is expensive and resource-intensive. Linkage of routinely collected administrative health data may provide an efficient alternative. Our aim was to determine the accuracy of linked routinely collected administrative data for monitoring prostate cancer care in New South Wales (NSW), Australia.</p> <p>Methods</p> <p>The NSW Prostate Cancer Care and Outcomes Study (PCOS), a population-based survey of patterns of care for men aged less than 70 years diagnosed with prostate cancer in NSW, was linked to the NSW Cancer Registry, electronic hospital discharge records and Medicare and Pharmaceutical claims data from Medicare Australia. The main outcome measures were treatment with radical prostatectomy, any radiotherapy, external beam radiotherapy, brachytherapy or androgen deprivation therapy, and cancer staging. PCOS data were considered to represent the true treatment status. The sensitivity and specificity of the administrative data were estimated and relevant patient characteristics were compared using chi-squared tests.</p> <p>Results</p> <p>The validation data set comprised 1857 PCOS patients with treatment information linked to Cancer Registry records. Hospital and Medicare claims data combined described treatment more accurately than either one alone. The combined data accurately recorded radical prostatectomy (96% sensitivity) and brachytherapy (93% sensitivity), but not androgen deprivation therapy (76% sensitivity). External beam radiotherapy was rarely captured (5% sensitivity), but this was improved by including Medicare claims for radiation field setting or dosimetry (86% sensitivity). False positive rates were near 0%. Disease stage comparisons were limited by one-third of cases having unknown stage in the Cancer Registry. Administrative data recorded treatment more accurately for cases in urban areas.</p> <p>Conclusions</p> <p>Cancer Registry and hospital inpatient data accurately captured radical prostatectomy and brachytherapy treatment, but not external beam radiotherapy or disease stage. Medicare claims data substantially improved the accuracy with which all major treatments were recorded. These administrative data combined are valid for population-based studies of some aspects of prostate cancer care.</p

Using administrative health data to describe colorectal and lung cancer care in New South Wales, Australia: a validation study

<p>Abstract</p> <p>Background</p> <p>Monitoring treatment patterns is crucial to improving cancer patient care. Our aim was to determine the accuracy of linked routinely collected administrative health data for monitoring colorectal and lung cancer care in New South Wales (NSW), Australia.</p> <p>Methods</p> <p>Colorectal and lung cancer cases diagnosed in NSW between 2000 and 2002 were identified from the NSW Central Cancer Registry (CCR) and linked to their hospital discharge records in the NSW Admitted Patient Data Collection (APDC). These records were then linked to data from two relevant population-based patterns of care surveys. The main outcome measures were the sensitivity and specificity of data from the CCR and APDC for disease staging, investigative procedures, curative surgery, chemotherapy, radiotherapy, and selected comorbidities.</p> <p>Results</p> <p>Data for 2917 colorectal and 1580 lung cancer cases were analysed. Unknown disease stage was more common for lung cancer in the administrative data (18%) than in the survey (2%). Colonoscopies were captured reasonably accurately in the administrative data compared with the surveys (82% and 79% respectively; 91% sensitivity, 53% specificity) but all other colorectal or lung cancer diagnostic procedures were under-enumerated. Ninety-one percent of colorectal cancer cases had potentially curative surgery recorded in the administrative data compared to 95% in the survey (96% sensitivity, 92% specificity), with similar accuracy for lung cancer (16% and 17%; 92% sensitivity, 99% specificity). Chemotherapy (~40% sensitivity) and radiotherapy (sensitivity≤30%) were vastly under-enumerated in the administrative data. The only comorbidity that was recorded reasonably accurately in the administrative data was diabetes.</p> <p>Conclusions</p> <p>Linked routinely collected administrative health data provided reasonably accurate information on potentially curative surgical treatment, colonoscopies and comorbidities such as diabetes. Other diagnostic procedures, comorbidities, chemotherapy and radiotherapy were not well enumerated in the administrative data. Other sources of data will be required to comprehensively monitor the primary management of cancer patients.</p

Stent insertion for palliation of advanced oesophageal carcinoma symptoms by level of socioeconomic disadvantage in urban New South Wales

For patients with advanced oesophageal carcinoma, palliation of debilitating symptoms such as dysphagia and odynophagia is important for improving quality of life. Owing to the possibility of complications, it is generally recommended that stents be used as a palliative measure when expected survival is less than 3 months. We analysed linked records from the NSW Central Cancer Registry, the NSW Admitted Patient Data Collection, NSW Registry of Births, Deaths and Marriages death registrations data and Australian Bureau of Statistics mortality data to investigate the association between socioeconomic disadvantage and palliation of advanced (stage IV) oesophageal carcinoma symptoms by stent insertion in urban-dwelling patients in New South Wales, from July 2001 to December 2007. The study was approved by the NSW Population and Health Services Research Ethics Committee

Health services costs for ovarian cancer in Australia: Estimates from the 45 and Up Study.

IntroductionThere have been significant advancements in risk identification and treatment for ovarian cancer over the last decade. However, their impact on health services costs is unclear. This study estimated the direct health system costs (government perspective) for women diagnosed with ovarian cancer in Australia during 2006-2013, as a benchmark prior to opportunities for precision-medicine approaches to treatment, and for health care planning.MethodsUsing cancer registry data, we identified 176 incident ovarian cancers (including fallopian tube and primary peritoneal cancer) in the Australian 45 and Up Study cohort. Each case was matched with four cancer-free controls on sex, age, geography, and smoking history. Costs were derived from linked health records on hospitalisations, subsidised prescription medicines and medical services to 2016. Excess costs for cancer cases were estimated for different phases of care relative to cancer diagnosis. Overall costs for prevalent ovarian cancers in Australia in 2013 were estimated based on 5-year prevalence statistics.ResultsAt diagnosis, 10% of women had localised disease, 15% regional spread and 70% distant metastasis (5% unknown). The mean excess cost per ovarian cancer case was $40,556 in the initial treatment phase (≤12 months post-diagnosis),$9,514 per annum in the continuing care phase and $49,208 in the terminal phase (up to 12 months before death). Hospital admissions accounted for the greatest proportion of costs during all phases (66$13,814 versus $4,884 for localised/regional disease). The estimated overall direct health services cost of ovarian cancer in 2013 was AUD$99million (4,700 women nationally).ConclusionThe excess health system costs of ovarian cancer are substantial. Continued investment in ovarian cancer research, particularly prevention, early detection and more effective personalised treatments is necessary to reduce the burden of disease

Capacity of the 45 and Up Study to mobilise evidence-based improvements in cancer control: lung cancer case study

Objective: Over the 15 years since the 45 and Up Study (the Study) was established, researchers have harnessed its capacity for enabling rigorous, comprehensive investigation of cancer causes, care, and outcomes. For the first time in Australia, the entire cancer-control continuum could be investigated by linking questionnaire data with cancer registry notifications, hospital records, outpatient medical services and prescription medications at scale. Here, we use lung cancer as a case study to demonstrate the Study’s potential to improve cancer control. Method: Narrative description. Results: Between 2006–2013, approximately 1200 participants in the Study cohort who had no prior history of cancer were diagnosed with lung cancer, allowing the generation of novel, policy- and practice-relevant evidence for tobacco control, screening, and systems of care. The Study produced evidence on the continuing impact of smoking, including that ‘light smoking’ (1–5 cigarettes/day) is associated with nine times the risk of lung cancer compared to never-smoking; and that 54% of lung cancers could be avoided long-term if all Australians who smoked were to quit. The Study was used to validate a lung cancer screening risk prediction tool, correctly identifying 70% of the participants with a history of smoking who developed lung cancer within a 6-year period as ‘high-risk’. Potential inequities in lung cancer care were identified using the Study cohort, including suboptimal levels of radiotherapy utilisation, below benchmark levels of systemic therapy for patients with metastatic disease, and high numbers of emergency department presentations prior to diagnosis. Participants with lung cancer reported poorer quality of life than those with almost any other cancer type, and about 50% reported severe physical functioning limitations. The Study also provided the infrastructure for the first comprehensive report on lung cancer health system costs. Lessons learnt: As a statewide, population-based cohort, the Study provides reliable estimates of cancer risk, health services utilisation, and person-centred outcomes that can inform policy and practice decision making; and has provided the backbone for localising policy-relevant insights from international experience. We have found that the direct involvement of clinicians and policy makers in research design, and engagement with community networks, can yield tractable, policy-relevant, and ultimately impactful scientific insights

Health services costs for cancer care in Australia: estimates from the 45 and Up Study

Background: Cancer care represents a substantial and rapidly rising healthcare cost in Australia. Our aim was to provide accurate population-based estimates of the health services cost of cancer care using large-scale linked patient-level data. Methods: We analysed data for incident cancers diagnosed 2006–2010 and followed to 2014 among 266,793 eligible participants in the 45 and Up Study. Health system costs included Medicare and pharmaceutical claims, inpatient hospital episodes and emergency department presentations. Costs for cancer cases and matched cancer-free controls were compared, to estimate monthly/annual excess costs of cancer care by cancer type, before and after diagnosis and by phase of care (initial, continuing, terminal). Total costs incurred in 2013 were also estimated for all people diagnosed in Australia 2009–2013. Results: 7624 participants diagnosed with cancer were matched with up to three controls. The mean excess cost of care per case was AUD$1,622 for the year before diagnosis,$33,944 for the first year post-diagnosis and $8,796 for the second year post-diagnosis, with considerable variation by cancer type. Mean annual cost after the initial treatment phase was$4,474/case and the mean cost for the last year of life was $49,733/case. In 2013 the cost for cancers among people in Australia diagnosed during 2009–2013 was ~$6.3billion (0.4% of Gross Domestic Product; $272 per capita), with the largest costs for colorectal cancer ($1.1billion), breast cancer ($0.8billion), lung cancer ($0.6billion) and prostate cancer ($0.5billion). Conclusions: The cost of cancer care is substantial and varies by cancer type and time since diagnosis. These findings emphasise the economic importance of effective primary and secondary cancer prevention strategies