“…Clinical registries augment linked population-based registry and administrative treatment data with data of greater detail and quality that can be used: (i) to validate courser population-based evidence for those patient groups where the data systems overlap; (ii) to monitor health-system performance; (iii) to undertake clinical research, including T1 translation of research from laboratory to clinical settings; (iv) to undertake comparative effectiveness research; and (v) to check how outcomes from clinical trials translate to outcomes in routine practice, including outcomes in older patients with multiple and complex disease who may not have been included in the trials (Beckmann et al, 2014a;Roder et al, 2014;Roder, 2015). The value of clinical and population-based registries can be greatly increased when data extracts from these registries are linked, along with linkage to screening registries and other administrative datasets (Beckmann et al, 2014a;Roder et al, 2014;Roder, 2015).…”
Section: Discussionmentioning
confidence: 99%
“…The value of clinical and population-based registries can be greatly increased when data extracts from these registries are linked, along with linkage to screening registries and other administrative datasets (Beckmann et al, 2014a;Roder et al, 2014;Roder, 2015).…”
Section: Discussionmentioning
confidence: 99%
“…While a national survey of colorectal cancers in 50-79 year olds indicated that approximately 24% were ACPS stage A (i.e., they had not spread beyond the muscularis propria at diagnosis) (NCCI, 2000), and a recent data-linkage study indicated a corresponding 20% of colorectal cancers were stage A among all South Australian cases aged 50-79 years (Beckmann et al, 2014a), the proportion of SACCR cases that were stage A has been lower at about 12% (SACR, 1999). Further, 29% of SACCR cases showed distant metastases compared with 18% of those included in the national survey and 14% of 50-79 year olds included in the South Australian linkage study (SACR, 1999;NCCI, 2000;Beckmann et al, 2014a). Five-year survivals for SACCR colorectal cases were lower during a 1991-1998 study period at 53% (SACR, 1999), compared with a corresponding 58% for all colorectal cases in South Australia and Australia overall (SACR, 1999;AIHW & AACR, 2001).…”
Based on survey data on uptake of adjuvant therapy among those offered this care, it is likely that all these younger patients were offered systemic treatment. Conclusions: We conclude that pronounced increases in survivals from colorectal cancer have occurred at major public hospitals in South Australia due to increases in stage-specific survivals. Use of adjuvant therapies has increased and the patterns of change accord with clinical guideline recommendations. Reasons for sub-optimal use of radiotherapy for rectal cases warrant further investigation, including the potential for limited rural access to impede uptake of treatments at metropolitan-based radiotherapy centres.
“…Clinical registries augment linked population-based registry and administrative treatment data with data of greater detail and quality that can be used: (i) to validate courser population-based evidence for those patient groups where the data systems overlap; (ii) to monitor health-system performance; (iii) to undertake clinical research, including T1 translation of research from laboratory to clinical settings; (iv) to undertake comparative effectiveness research; and (v) to check how outcomes from clinical trials translate to outcomes in routine practice, including outcomes in older patients with multiple and complex disease who may not have been included in the trials (Beckmann et al, 2014a;Roder et al, 2014;Roder, 2015). The value of clinical and population-based registries can be greatly increased when data extracts from these registries are linked, along with linkage to screening registries and other administrative datasets (Beckmann et al, 2014a;Roder et al, 2014;Roder, 2015).…”
Section: Discussionmentioning
confidence: 99%
“…The value of clinical and population-based registries can be greatly increased when data extracts from these registries are linked, along with linkage to screening registries and other administrative datasets (Beckmann et al, 2014a;Roder et al, 2014;Roder, 2015).…”
Section: Discussionmentioning
confidence: 99%
“…While a national survey of colorectal cancers in 50-79 year olds indicated that approximately 24% were ACPS stage A (i.e., they had not spread beyond the muscularis propria at diagnosis) (NCCI, 2000), and a recent data-linkage study indicated a corresponding 20% of colorectal cancers were stage A among all South Australian cases aged 50-79 years (Beckmann et al, 2014a), the proportion of SACCR cases that were stage A has been lower at about 12% (SACR, 1999). Further, 29% of SACCR cases showed distant metastases compared with 18% of those included in the national survey and 14% of 50-79 year olds included in the South Australian linkage study (SACR, 1999;NCCI, 2000;Beckmann et al, 2014a). Five-year survivals for SACCR colorectal cases were lower during a 1991-1998 study period at 53% (SACR, 1999), compared with a corresponding 58% for all colorectal cases in South Australia and Australia overall (SACR, 1999;AIHW & AACR, 2001).…”
Based on survey data on uptake of adjuvant therapy among those offered this care, it is likely that all these younger patients were offered systemic treatment. Conclusions: We conclude that pronounced increases in survivals from colorectal cancer have occurred at major public hospitals in South Australia due to increases in stage-specific survivals. Use of adjuvant therapies has increased and the patterns of change accord with clinical guideline recommendations. Reasons for sub-optimal use of radiotherapy for rectal cases warrant further investigation, including the potential for limited rural access to impede uptake of treatments at metropolitan-based radiotherapy centres.
“…41 Registry data linkage with administrative data enables assessment of patterns of care and other performance indicators for health-system monitoring. [36][37][38][39][40] Administrative data may lack the quality of customised registry data, but they complement the registry data and are adequate for showing broad populationwide patterns of care. 34,[36][37][38] Clinical registries may be used to validate linked administrative data in instances where these data cover common patient groups.…”
Section: Emerging Rolesmentioning
confidence: 99%
“…[36][37][38][39][40] Addition of tumour/node/metastases (TNM) cancer stage and other prognostic indicators to registry databases is important for these analyses and is facilitated by the increased use of structured pathology reporting advocated by the Royal College of Pathologists of Australasia. 41 Registry data linkage with administrative data enables assessment of patterns of care and other performance indicators for health-system monitoring.…”
Abstract.Registries have key roles in cancer incidence, mortality and survival monitoring and in showing disparities across the population. Incidence monitoring began in New South Wales in 1972 and other jurisdictions soon followed. Registry data are used to evaluate outcomes of preventive, screening, treatment and support services. They have shown decreases in cancer incidence following interventions and have been used for workforce and other infrastructure planning. Crude markers of optimal radiotherapy and chemotherapy exist and registry data are used to show shortfalls against these markers. The data are also used to investigate cancer clusters and environmental concerns. Survival data are used to assess service performance and interval cancer data are used in screening accreditation. Registries enable determination of risk of multiple primary cancers. Clinical quality registries are used for clinical quality improvement. Population-based cancer registries and linked administrative data complement clinical registries by providing high-level system-wide data. The USA Commission on Cancer has long used registries for quality assurance and service accreditation. Increasingly population-based registry data in Australia are linked with administrative data on service delivery to assess system performance. Addition of tumour stage and other prognostic indicators is important for these analyses and is facilitated by the roll-out of structured pathology reporting. Data linkage with administrative data, following checks on the quality of these data, enables assessment of patterns of care and other performance indicators for health-system monitoring. Australian cancer registries have evolved and increasingly are contributing to broader information networks for health system management.
Traditional rolesCancer registries perform a fundamentally important role in monitoring incidence, mortality and survival by cancer type across the population and show sociodemographic disparities.
International clinical guidelines recommend long-or short-course neoadjuvant radiotherapy for locally advanced rectal cancer. This study aims to examine variation in the use of neoadjuvant radiotherapy for rectal cancer and identify patient and hospital factors that underpin this variation.
Methods and Materials:We conducted a retrospective, consecutive cohort study using statewide hospitalisation and radiotherapy data from New South Wales, Australia, 2013-2018. Included participants had a primary rectal adenocarcinoma and underwent surgical resection. Factors associated with the use or not of any neoadjuvant radiotherapy, and short versus long-course were explored using multilevel logistic regression models.Results: Of the 2912 people included in the study, 43% received neoadjuvant radiotherapy. There was significant variation in the use of neoadjuvant radiotherapy depending on geographic location. Abdominoperineal excision (odds ratio [OR] = 1.87, 95% confidence interval [CI] = 1.53-2.28) and having surgery in a public hospital (OR = 2.34, 95% CI = 1.92-2.87) were both predictors of use. Among those receiving neoadjuvant radiotherapy, 17% received short-course therapy, with shortcourse declining over the study period.Conclusions: The use of neoadjuvant radiotherapy for rectal cancer is highly variable, with differences only partially explained by assessable patient-or hospital-level factors. Understanding neoadjuvant radiotherapy utilisation patterns may assist in identifying barriers and opportunities to improve adherence to clinical guidelines.
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