Journal of Medical Imaging and Radiation Oncology 58 (2014) 691–692 bs_bs_banner
R ADIATION O N C O LO GY —E DI TO R I A L
Registries and paediatric radiation oncology
Submitted 3 August 2014; accepted 6 September 2014. doi:10.1111/1754-9485.12253
In this issue of the Journal of Medical Imaging and Radiation Oncology, Ahern et al. show that a registry for paediatric oncology patients receiving radiation therapy (RT) gives invaluable information.1Registry data analysis can help to assess patterns of care across different regions and determine the necessary resources for effective therapy in terms of both healthcare professionals (HCPs) and treatment facilities. More importantly, registries give us the ability to study treatment efficacy and toxicity. Determining these outcomes is especially critical for children treated with RT. We have become increasingly aware that these patients are at risk for serious long-term health problems2 and need preventative surveillance and intervention. Our knowledge about these late effects is not static. How are we to learn more about late effects and identify patients who would benefit from screening, if there is no centralized registry? To optimise the ongoing health care of this population, a registry for paediatric oncology patients treated with RT is essential. In addition, cancer registries have a critical role in research by providing statistical data from an unbiased source of participants for population-based studies. The devil is in the details. Who should provide the funds to create and maintain a registry? How should one organise and populate the database? Registry organisers need to select relevant information and assign specific individuals to enter that information. The authors also thoroughly explore the pitfalls of trying to maintain an accurate registry. Although the database outlined is specifically designed to capture information about the practice of paediatric radiation oncology, many of the problems discussed relate to any cancer registry. The barriers to enrolling patients in cancer registries include fulfilling the requirements of different privacy laws in the setting of multiple jurisdictions. Recruitment strategies need to maximise privacy protection, and investigators should have no personal information about patients in a registry without their permission.3 This may compromise participant registration, especially where registry laws and regulations vary by state and province as in the United States, Australia and Canada. Resources are also problematic in the current time of budget restraints and cuts to healthcare funding. Should © 2014 The Royal Australian and New Zealand College of Radiologists
physicians be responsible for entering the data? Radiation oncologists, like most groups of clinicians, are increasingly expected to undertake extra tasks such as peer review of radical radiation therapy plans with no extra allotted resources.4 The authors document that the practice of paediatric radiation oncology is more labour intensive and time consuming than adult radiation oncology. However, paediatric radiation oncologists do not see significantly less patients in consultation. It is difficult to think that in these circumstances, paediatric radiation oncologists are going to have either the time or inclination to assiduously enter details into a database. There is an interesting discussion about how to encourage participation in a registry. The recommendation that completion of registry forms should be a prerequisite for inclusion in the definition of a paediatric radiation oncology subspecialist is explored. Much good evidence is provided to support the idea that being involved in a registry encourages clinical excellence. However, unless new resources are provided, clinicians are unlikely to be enthusiastic participants. It is critical that registries are not only accurate and comprehensive, but also designed to link with other databases. For example, the Pediatric Oncology Group of Ontario (POGO) is supported largely by the Ontario Ministry of Health and is an association involving all institutions and HCPs treating childhood cancer in that Canadian Province. In 1983, POGO established that none of the childhood cancer data sources available provided sufficient information to enable policy development and planning. Therefore, POGO built and continues to maintain the Pediatric Oncology Group of Ontario Networked Information System (POGONIS). This is a database and registry that captures selective, standardised data on all childhood cancer cases in Ontario. This information includes treatment details including RT. Each of the five POGO centres across Ontario enters data into POGONIS and is able to use this registry to track its own statistics regarding patient care and service output. POGONIS is an active cancer registry with trained abstractors in each hospital who collect and enter the information. POGONIS is linked to the Ontario Cancer Registry to capture toxicity such as second cancers and late 691
Editorial
mortality. POGONIS is further linked to health administrative data available at the Institute for Clinical and Evaluative Sciences.5 These data include individual level billing records for all services paid for by the Ontario Health Insurance Plan, as well as hospitalisations and ambulatory care visits. POGO is organising a meeting at the 2014 Congress of the International Society of Paediatric Oncology in Toronto, specifically to discuss the development of cancer registries. The aim is to bring together various groups from around the world who have populationbased childhood cancer registries that can be linked to administrative health utilisation data and to encourage collaboration and the development of international comprehensive registries. The population-based Australian Paediatric Cancer Registry (APCR) is an outstanding registry, and data from this source have been used to describe relative survival outcomes for children treated for childhood cancer.6 Though the registry described for paediatric radiation oncology is not part of the APCR, it is possible that both databases would benefit from linkage. Registries have a vital role to play, and when properly managed are critical to ensure continued progress in the treatment of childhood cancer. The development of registries that involve all paediatric oncology specialist HCPs and link to other regional cancer centres will encourage communication, research and excellence in clinical care, both locally and nationally. Registries also have the potential to facilitate future international collaboration. If we do not have accurate, comprehensive registries, we will lack the necessary information to understand and improve the efficacy and toxicity of our current therapies.
692
KAREN GODDARD Department of Surgery, Division of Radiotherapy and Developmental Radiotherapeutics, University of British Columbia, Vancouver, British Columbia, Canada
References 1. Ahern V. Utility of an Australasian registry for children undergoing radiation treatment. J Med Imaging Radiat Oncol 2014; 58: 693–99. 2. Hudson MM, Ness KK, Gurney JG et al. Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA 2013; 309: 2371–81. 3. Beskow LM, Sandler RS, Weinberger M. Research recruitment through US central cancer registries: balancing privacy and scientific issues. Am J Public Health 2006; 96: 1920–6. 4. Hamilton SN, Hasan H, Parsons C et al. Canadian radiation oncologists’ opinions regarding peer review: a national survey. Pract Radiat Oncol 2014. doi: 10.1016/j.prro.2014.06.002. 5. The Institute for Clinical and Evaluative Sciences. Pediatric Oncology Group of Ontario Privacy update spring/summer 2009. [Cited 1 Aug 2014.] Available from URL: www.ices.on.ca. 6. Baade PD, Youlden DR, Valery PC et al. Population-based survival estimates for childhood cancer in Australia during the period 1997–2006. Br J Cancer 2010; 103: 1663–70.
© 2014 The Royal Australian and New Zealand College of Radiologists
Copyright of Journal of Medical Imaging & Radiation Oncology is the property of WileyBlackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
R ADIATION O N C O LO GY —E DI TO R I A L
Registries and paediatric radiation oncology
Submitted 3 August 2014; accepted 6 September 2014. doi:10.1111/1754-9485.12253
In this issue of the Journal of Medical Imaging and Radiation Oncology, Ahern et al. show that a registry for paediatric oncology patients receiving radiation therapy (RT) gives invaluable information.1Registry data analysis can help to assess patterns of care across different regions and determine the necessary resources for effective therapy in terms of both healthcare professionals (HCPs) and treatment facilities. More importantly, registries give us the ability to study treatment efficacy and toxicity. Determining these outcomes is especially critical for children treated with RT. We have become increasingly aware that these patients are at risk for serious long-term health problems2 and need preventative surveillance and intervention. Our knowledge about these late effects is not static. How are we to learn more about late effects and identify patients who would benefit from screening, if there is no centralized registry? To optimise the ongoing health care of this population, a registry for paediatric oncology patients treated with RT is essential. In addition, cancer registries have a critical role in research by providing statistical data from an unbiased source of participants for population-based studies. The devil is in the details. Who should provide the funds to create and maintain a registry? How should one organise and populate the database? Registry organisers need to select relevant information and assign specific individuals to enter that information. The authors also thoroughly explore the pitfalls of trying to maintain an accurate registry. Although the database outlined is specifically designed to capture information about the practice of paediatric radiation oncology, many of the problems discussed relate to any cancer registry. The barriers to enrolling patients in cancer registries include fulfilling the requirements of different privacy laws in the setting of multiple jurisdictions. Recruitment strategies need to maximise privacy protection, and investigators should have no personal information about patients in a registry without their permission.3 This may compromise participant registration, especially where registry laws and regulations vary by state and province as in the United States, Australia and Canada. Resources are also problematic in the current time of budget restraints and cuts to healthcare funding. Should © 2014 The Royal Australian and New Zealand College of Radiologists
physicians be responsible for entering the data? Radiation oncologists, like most groups of clinicians, are increasingly expected to undertake extra tasks such as peer review of radical radiation therapy plans with no extra allotted resources.4 The authors document that the practice of paediatric radiation oncology is more labour intensive and time consuming than adult radiation oncology. However, paediatric radiation oncologists do not see significantly less patients in consultation. It is difficult to think that in these circumstances, paediatric radiation oncologists are going to have either the time or inclination to assiduously enter details into a database. There is an interesting discussion about how to encourage participation in a registry. The recommendation that completion of registry forms should be a prerequisite for inclusion in the definition of a paediatric radiation oncology subspecialist is explored. Much good evidence is provided to support the idea that being involved in a registry encourages clinical excellence. However, unless new resources are provided, clinicians are unlikely to be enthusiastic participants. It is critical that registries are not only accurate and comprehensive, but also designed to link with other databases. For example, the Pediatric Oncology Group of Ontario (POGO) is supported largely by the Ontario Ministry of Health and is an association involving all institutions and HCPs treating childhood cancer in that Canadian Province. In 1983, POGO established that none of the childhood cancer data sources available provided sufficient information to enable policy development and planning. Therefore, POGO built and continues to maintain the Pediatric Oncology Group of Ontario Networked Information System (POGONIS). This is a database and registry that captures selective, standardised data on all childhood cancer cases in Ontario. This information includes treatment details including RT. Each of the five POGO centres across Ontario enters data into POGONIS and is able to use this registry to track its own statistics regarding patient care and service output. POGONIS is an active cancer registry with trained abstractors in each hospital who collect and enter the information. POGONIS is linked to the Ontario Cancer Registry to capture toxicity such as second cancers and late 691
Editorial
mortality. POGONIS is further linked to health administrative data available at the Institute for Clinical and Evaluative Sciences.5 These data include individual level billing records for all services paid for by the Ontario Health Insurance Plan, as well as hospitalisations and ambulatory care visits. POGO is organising a meeting at the 2014 Congress of the International Society of Paediatric Oncology in Toronto, specifically to discuss the development of cancer registries. The aim is to bring together various groups from around the world who have populationbased childhood cancer registries that can be linked to administrative health utilisation data and to encourage collaboration and the development of international comprehensive registries. The population-based Australian Paediatric Cancer Registry (APCR) is an outstanding registry, and data from this source have been used to describe relative survival outcomes for children treated for childhood cancer.6 Though the registry described for paediatric radiation oncology is not part of the APCR, it is possible that both databases would benefit from linkage. Registries have a vital role to play, and when properly managed are critical to ensure continued progress in the treatment of childhood cancer. The development of registries that involve all paediatric oncology specialist HCPs and link to other regional cancer centres will encourage communication, research and excellence in clinical care, both locally and nationally. Registries also have the potential to facilitate future international collaboration. If we do not have accurate, comprehensive registries, we will lack the necessary information to understand and improve the efficacy and toxicity of our current therapies.
692
KAREN GODDARD Department of Surgery, Division of Radiotherapy and Developmental Radiotherapeutics, University of British Columbia, Vancouver, British Columbia, Canada
References 1. Ahern V. Utility of an Australasian registry for children undergoing radiation treatment. J Med Imaging Radiat Oncol 2014; 58: 693–99. 2. Hudson MM, Ness KK, Gurney JG et al. Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA 2013; 309: 2371–81. 3. Beskow LM, Sandler RS, Weinberger M. Research recruitment through US central cancer registries: balancing privacy and scientific issues. Am J Public Health 2006; 96: 1920–6. 4. Hamilton SN, Hasan H, Parsons C et al. Canadian radiation oncologists’ opinions regarding peer review: a national survey. Pract Radiat Oncol 2014. doi: 10.1016/j.prro.2014.06.002. 5. The Institute for Clinical and Evaluative Sciences. Pediatric Oncology Group of Ontario Privacy update spring/summer 2009. [Cited 1 Aug 2014.] Available from URL: www.ices.on.ca. 6. Baade PD, Youlden DR, Valery PC et al. Population-based survival estimates for childhood cancer in Australia during the period 1997–2006. Br J Cancer 2010; 103: 1663–70.
© 2014 The Royal Australian and New Zealand College of Radiologists
Copyright of Journal of Medical Imaging & Radiation Oncology is the property of WileyBlackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
