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Implementing a population-based cancer registries network in Mexico
abstracts
Annals of Oncology
1662P
Does the healthcare system approaches cancer patients for using private services during diagnostic process?
K. Osowiecka1, R. Sroda2, A. Saied2, M. Szwiec3, S. Mangold4, D. Osuch4, S. Nawrocki2, M. Rucinska2 1 Public Health, University of Warmia and Mazury in Olsztyn, Olsztyn, Poland, 2 Oncological Department, University of Warmia and Mazury in Olsztyn, Olsztyn, Poland, 3Department of Clinical Oncology, University Hospital in Zielona Gora, Zielona Gora, Poland, 4Department of Oncology and Radiotherapy, Medical University of Silesia in Katowice, Katowice, Poland
1663P
Measuring financial toxicity of cancer in the Italian health care system: Initial results of the patient reported outcome for fighting financial toxicity of cancer project (proFFiT)
S. Riva1, M. Di Maio2, F. Efficace3, L. Frontini4, C. Gallo5, D. Giannarelli6, o10, L. Gitto11, V. Montesarchio7, F. De Lorenzo8, L. Del Campo8, E. Iannelli9, F. Tracl C. Jommi12, C.M. Vaccaro13, J.C. Bryce14, A. Gimigliano14, L. Sparavigna14, F. Perrone14 1 Science and Engineering, University of Wolverhampton, Wolverhampton, UK, 2 Dipartimento di Oncologia, Universit a degli Studi di Torino, Turin, Italy, 3Research, Fondazione GIMEMA Onlus, Rome, Italy, 4Research, Fondazione GISCAD, Milan, Italy, 5 Statistica Medica, Universit a della Campania Luigi Vanvitelli, Naples, Italy, 6 Biostatistical Unit, Regina Elena National Cancer Institute, Rome, Italy, 7Oncologia, Azienda Ospedaliera Dei Colli-Monaldi, Naples, Italy, 8FAVO, Federazione Italiana Delle Associazioni Di Volontariato In Oncologia, Rome, Italy, 9Secretary, AIMaC Associazione Italiana Malati di Cancro, Rome, Italy, 10Research, AIMaC - Associazione a degli Italiana Malati di Cancro, Rome, Italy, 11Dipartimento di Economia, Universit Studi di Messina, Messina, Italy, 12Practice, Government, Health and Not for Profit 13 Division, SDA Bocconi School of Management, Milan, Italy, Area Welfare e Salute, Centro Studi Investimenti Sociali (CENSIS), Rome, Italy, 14Clinical Trial Unit, Istituto Nazionale Tumori - IRCCS - Fondazione Pascale, Naples, Italy Background: Financial toxicity in cancer patients has been initially reported in the United States and subsequently in other countries, including Italy, despite a health care system grounded on universal coverage. Considering that the way healthcare and welfare systems are shaped does impact on financial problems faced by cancer patients, we are developing an instrument for evaluating occurrence, gravity, and consequences of financial toxicity in Italy, and hopefully for fighting it. Methods: Concept elicitation, item generation and qualitative analyses represented the initial tasks of the project. Literature review, focus groups with 34 cancer patients or caregivers in three regions located in North, Central, and South Italy, and semi-structured interviews with 97 oncologists were conducted for concept elicitation. A recursive process was used to identify themes in the data to inform the instrument until saturation was reached. Importance analysis questionnaires were administered to a further 44 cancer patients to evaluate and revise the draft item pool. A multi-disciplinary committee (including oncologists, psychologists, statisticians, patient association’s representatives, nurses, social science researchers and economists) oversaw the project.
Volume 30 | Supplement 5 | October 2019
M. Di Maio: Honoraria (self): BMS; Honoraria (self): MSD; Honoraria (self): Roche; Honoraria (self): AstraZeneca; Honoraria (self): Janssen. F. Efficace: Honoraria (self): BMS; Honoraria (self): Incyte; Honoraria (self): Orsenix; Honoraria (self): Amgen. V. Montesarchio: Honoraria (self): BMS; Honoraria (self): Italfarmaco; Spouse / Financial dependant: Bayer. F. Perrone: Honoraria (self): AstraZeneca; Honoraria (self): Bayer; Honoraria (self): Celgene; Honoraria (self): Incyte; Honoraria (self): Janssen-Cilag; Honoraria (self): Pierre Fabre; Honoraria (self): Sandoz. All other authors have declared no conflicts of interest.
1664P
Implementing a population-based cancer registries network in Mexico
A. Palafox-Parrilla, H. Brau-Figueroa, P. Parrilla-Taylor, E.O. Montelongo-Terriquez, R. Rangel-Velazquez, D. Palami-Antunez Red Nacional de Registros de C ancer, Instituto Nacional de Cancerologıa, Mexico City, Mexico Background: Malignant tumors represent a major public health problem in the world and Mexico is not the exception. The development of Population-Based Cancer Registries (PBCR) that collect cancer cases in a determined locality and help evaluate health programs is fundamental. In Mexico there were only a couple of attempts on hospital and histopathological registries, reason why it was decided to implement a PBCR, named as the National Network of Cancer Registries (NNCR). Methods: During the creation process, support was received from the International Agency of Research in Cancer (IARC), through the Global Initiative for Cancer Registry Development. The NNRC is operated in a central level located in Mexico City, and the cases in the sources of information established are registered in a national registration form composed of 29 variables structured and standardized according to international guidelines. The collection and administration of information is done through a technological system, called RedCancerMX in a mobile and web application hosted on the cloud. Results: In 2016, the General Health Law was modified to create the National Cancer Registry and in 2017 it was approved. In July 2018 the regulations of the NNCR are published, which establishes the bases for organization, integration and coordination. To the date, the NNCR is active in 8 cities, reaching 10% of national coverage. The process of integration of each city to the NNCR, included a feasibility analysis, validation and training. The process of obtaining data covers subprocesses of collection, validation and authorization carried out by medical specialists. RedCancerMX had integrated 11 validations established by international organizations to guarantee the quality of the information and they are aligned to quality indicators proposed by the IARC: comparability, validity, timeliness and completeness. Conclusions: In Mexico, the NNCR is already established, which is considered an epidemiological surveillance system with national, active and continuous validity. This NNCR will allow us to determine the incidence of cancer and survival rates in the Mexican population, helping to implement new and better strategies for cancer control. Legal entity responsible for the study: Instituto Nacional de Cancerologıa. Funding: Has not received any funding. Disclosure: All authors have declared no conflicts of interest.
1665P
Awareness of cancer risk factors among high school students
M. Rucinska1, R. Sroda1, O. Wilk1, J. Miloszewski1, K. Osowiecka2 Oncological Department, University of Warmia and Mazury in Olsztyn, Olsztyn, Poland, 2Public Health, University of Warmia and Mazury in Olsztyn, Olsztyn, Poland
1
Background: For cancer prevention and early diagnostics oncological awareness of the ordinary people is crucial. The knowledge of the problem is extremely important in young population. The aim of the study was to assess the basic oncological knowledge of high school students. Methods: The study was conducted among high school students in Olsztyn in Poland between April 2017 and April 2018. It was a part of a health promotion program focused on oncological education for high school students in Warmia and Mazury District. The examination was carried out at the beginning of lectures conducted by
doi:10.1093/annonc/mdz263 | v681
Downloaded from https://academic.oup.com/annonc/article-abstract/30/Supplement_5/mdz263.035/5576958 by guest on 26 October 2019
Background: The waiting time for cancer diagnosis and treatment could influence patients’ survival. However, in Poland the waiting time is still long. In Poland, medical care is financed by the government and free for patients, but in a situation of long waiting times for diagnostic tests or in cases where it is impossible to obtain some other health services, patients use the private sector. The rationale for this study was to figure out if there are any difficulties in the oncological system and assessment of whether patients have to use the private sector. Methods: The study was carried out on a group of 384 patients who were being treated for malignant neoplasm in five oncological centers in Poland. A questionnaire was prepared specifically for this study and each patient was interviewed individually. The questionnaire was validated on a group of 20 patients. The measure of compliance was calculated using Cohen’s Kappa coefficient. The study protocol was approved by the Local Ethics Committee. All of the participants had submitted a signed consent form. Results: 202 women and 180 men (2 no data) were analyzed, median age 65 years. 67% of patients declared problems with getting social service and significant differences in getting social service were observed between various regions of Poland (p < 0.001). One third of patients (32%) used private services during the diagnostic process. Patients with higher education showed significantly more frequent problems (p ¼ 0.03). 91% of patients declared difficulties during treatment. Those who showed significantly more frequent problems were: women (p ¼ 0.04), younger patients (p ¼ 0.0015), professionally active (p ¼ 0.025) with higher education (p < 0.001), living in cities (p ¼ 0.016). More than half of patients with higher education (54%) paid for healthcare services in comparison with patients with lower education levels (average 25%) (p < 0.001). Conclusions: Cancer patients have some difficulties in the oncological system in Poland. The younger people, those with higher education, the professionally active, and those living in cities seem to be more aware of their rights. The proper solution could be to introduce corrections in oncological organization to avoid the need of using private services. Legal entity responsible for the study: The authors. Funding: Has not received any funding. Disclosure: All authors have declared no conflicts of interest.
Results: Overall, 156 concepts were distributed among 10 themes (bureaucracy, medical care, domestic economy, emotion, family, job, health workers, welfare state, free time, transportation). After controlling for redundancy, 55 candidate items were generated and 30 items, with at least one per each theme, remained after importance analysis. Out of the 30 items, 23 (77%) refer to material conditions, 4 (13%) to psychological response, and 3 (10%) to coping behaviors. Conclusions: The first results of the proFFiT project show that most of the items selected by patients are related to material conditions that cause, or derive from, financial hardship. The final questionnaire will be ready by the end of 2019. Supported by Fondazione AIRC IG grant 2017-20402. Clinical trial identification: NCT03473379. Legal entity responsible for the study: Istituto Nazionale per lo Studio e la Cura dei Tumori Fondazione Pascale IRCCS, Naples, Italy. Funding: Fondazione AIRC IG grant 2017-20402. Disclosure: S. Riva: Honoraria (self): CSL-Behring; Honoraria (self): GlaxoSmithLine Foundation.
Annals of Oncology
1662P
Does the healthcare system approaches cancer patients for using private services during diagnostic process?
K. Osowiecka1, R. Sroda2, A. Saied2, M. Szwiec3, S. Mangold4, D. Osuch4, S. Nawrocki2, M. Rucinska2 1 Public Health, University of Warmia and Mazury in Olsztyn, Olsztyn, Poland, 2 Oncological Department, University of Warmia and Mazury in Olsztyn, Olsztyn, Poland, 3Department of Clinical Oncology, University Hospital in Zielona Gora, Zielona Gora, Poland, 4Department of Oncology and Radiotherapy, Medical University of Silesia in Katowice, Katowice, Poland
1663P
Measuring financial toxicity of cancer in the Italian health care system: Initial results of the patient reported outcome for fighting financial toxicity of cancer project (proFFiT)
S. Riva1, M. Di Maio2, F. Efficace3, L. Frontini4, C. Gallo5, D. Giannarelli6, o10, L. Gitto11, V. Montesarchio7, F. De Lorenzo8, L. Del Campo8, E. Iannelli9, F. Tracl C. Jommi12, C.M. Vaccaro13, J.C. Bryce14, A. Gimigliano14, L. Sparavigna14, F. Perrone14 1 Science and Engineering, University of Wolverhampton, Wolverhampton, UK, 2 Dipartimento di Oncologia, Universit a degli Studi di Torino, Turin, Italy, 3Research, Fondazione GIMEMA Onlus, Rome, Italy, 4Research, Fondazione GISCAD, Milan, Italy, 5 Statistica Medica, Universit a della Campania Luigi Vanvitelli, Naples, Italy, 6 Biostatistical Unit, Regina Elena National Cancer Institute, Rome, Italy, 7Oncologia, Azienda Ospedaliera Dei Colli-Monaldi, Naples, Italy, 8FAVO, Federazione Italiana Delle Associazioni Di Volontariato In Oncologia, Rome, Italy, 9Secretary, AIMaC Associazione Italiana Malati di Cancro, Rome, Italy, 10Research, AIMaC - Associazione a degli Italiana Malati di Cancro, Rome, Italy, 11Dipartimento di Economia, Universit Studi di Messina, Messina, Italy, 12Practice, Government, Health and Not for Profit 13 Division, SDA Bocconi School of Management, Milan, Italy, Area Welfare e Salute, Centro Studi Investimenti Sociali (CENSIS), Rome, Italy, 14Clinical Trial Unit, Istituto Nazionale Tumori - IRCCS - Fondazione Pascale, Naples, Italy Background: Financial toxicity in cancer patients has been initially reported in the United States and subsequently in other countries, including Italy, despite a health care system grounded on universal coverage. Considering that the way healthcare and welfare systems are shaped does impact on financial problems faced by cancer patients, we are developing an instrument for evaluating occurrence, gravity, and consequences of financial toxicity in Italy, and hopefully for fighting it. Methods: Concept elicitation, item generation and qualitative analyses represented the initial tasks of the project. Literature review, focus groups with 34 cancer patients or caregivers in three regions located in North, Central, and South Italy, and semi-structured interviews with 97 oncologists were conducted for concept elicitation. A recursive process was used to identify themes in the data to inform the instrument until saturation was reached. Importance analysis questionnaires were administered to a further 44 cancer patients to evaluate and revise the draft item pool. A multi-disciplinary committee (including oncologists, psychologists, statisticians, patient association’s representatives, nurses, social science researchers and economists) oversaw the project.
Volume 30 | Supplement 5 | October 2019
M. Di Maio: Honoraria (self): BMS; Honoraria (self): MSD; Honoraria (self): Roche; Honoraria (self): AstraZeneca; Honoraria (self): Janssen. F. Efficace: Honoraria (self): BMS; Honoraria (self): Incyte; Honoraria (self): Orsenix; Honoraria (self): Amgen. V. Montesarchio: Honoraria (self): BMS; Honoraria (self): Italfarmaco; Spouse / Financial dependant: Bayer. F. Perrone: Honoraria (self): AstraZeneca; Honoraria (self): Bayer; Honoraria (self): Celgene; Honoraria (self): Incyte; Honoraria (self): Janssen-Cilag; Honoraria (self): Pierre Fabre; Honoraria (self): Sandoz. All other authors have declared no conflicts of interest.
1664P
Implementing a population-based cancer registries network in Mexico
A. Palafox-Parrilla, H. Brau-Figueroa, P. Parrilla-Taylor, E.O. Montelongo-Terriquez, R. Rangel-Velazquez, D. Palami-Antunez Red Nacional de Registros de C ancer, Instituto Nacional de Cancerologıa, Mexico City, Mexico Background: Malignant tumors represent a major public health problem in the world and Mexico is not the exception. The development of Population-Based Cancer Registries (PBCR) that collect cancer cases in a determined locality and help evaluate health programs is fundamental. In Mexico there were only a couple of attempts on hospital and histopathological registries, reason why it was decided to implement a PBCR, named as the National Network of Cancer Registries (NNCR). Methods: During the creation process, support was received from the International Agency of Research in Cancer (IARC), through the Global Initiative for Cancer Registry Development. The NNRC is operated in a central level located in Mexico City, and the cases in the sources of information established are registered in a national registration form composed of 29 variables structured and standardized according to international guidelines. The collection and administration of information is done through a technological system, called RedCancerMX in a mobile and web application hosted on the cloud. Results: In 2016, the General Health Law was modified to create the National Cancer Registry and in 2017 it was approved. In July 2018 the regulations of the NNCR are published, which establishes the bases for organization, integration and coordination. To the date, the NNCR is active in 8 cities, reaching 10% of national coverage. The process of integration of each city to the NNCR, included a feasibility analysis, validation and training. The process of obtaining data covers subprocesses of collection, validation and authorization carried out by medical specialists. RedCancerMX had integrated 11 validations established by international organizations to guarantee the quality of the information and they are aligned to quality indicators proposed by the IARC: comparability, validity, timeliness and completeness. Conclusions: In Mexico, the NNCR is already established, which is considered an epidemiological surveillance system with national, active and continuous validity. This NNCR will allow us to determine the incidence of cancer and survival rates in the Mexican population, helping to implement new and better strategies for cancer control. Legal entity responsible for the study: Instituto Nacional de Cancerologıa. Funding: Has not received any funding. Disclosure: All authors have declared no conflicts of interest.
1665P
Awareness of cancer risk factors among high school students
M. Rucinska1, R. Sroda1, O. Wilk1, J. Miloszewski1, K. Osowiecka2 Oncological Department, University of Warmia and Mazury in Olsztyn, Olsztyn, Poland, 2Public Health, University of Warmia and Mazury in Olsztyn, Olsztyn, Poland
1
Background: For cancer prevention and early diagnostics oncological awareness of the ordinary people is crucial. The knowledge of the problem is extremely important in young population. The aim of the study was to assess the basic oncological knowledge of high school students. Methods: The study was conducted among high school students in Olsztyn in Poland between April 2017 and April 2018. It was a part of a health promotion program focused on oncological education for high school students in Warmia and Mazury District. The examination was carried out at the beginning of lectures conducted by
doi:10.1093/annonc/mdz263 | v681
Downloaded from https://academic.oup.com/annonc/article-abstract/30/Supplement_5/mdz263.035/5576958 by guest on 26 October 2019
Background: The waiting time for cancer diagnosis and treatment could influence patients’ survival. However, in Poland the waiting time is still long. In Poland, medical care is financed by the government and free for patients, but in a situation of long waiting times for diagnostic tests or in cases where it is impossible to obtain some other health services, patients use the private sector. The rationale for this study was to figure out if there are any difficulties in the oncological system and assessment of whether patients have to use the private sector. Methods: The study was carried out on a group of 384 patients who were being treated for malignant neoplasm in five oncological centers in Poland. A questionnaire was prepared specifically for this study and each patient was interviewed individually. The questionnaire was validated on a group of 20 patients. The measure of compliance was calculated using Cohen’s Kappa coefficient. The study protocol was approved by the Local Ethics Committee. All of the participants had submitted a signed consent form. Results: 202 women and 180 men (2 no data) were analyzed, median age 65 years. 67% of patients declared problems with getting social service and significant differences in getting social service were observed between various regions of Poland (p < 0.001). One third of patients (32%) used private services during the diagnostic process. Patients with higher education showed significantly more frequent problems (p ¼ 0.03). 91% of patients declared difficulties during treatment. Those who showed significantly more frequent problems were: women (p ¼ 0.04), younger patients (p ¼ 0.0015), professionally active (p ¼ 0.025) with higher education (p < 0.001), living in cities (p ¼ 0.016). More than half of patients with higher education (54%) paid for healthcare services in comparison with patients with lower education levels (average 25%) (p < 0.001). Conclusions: Cancer patients have some difficulties in the oncological system in Poland. The younger people, those with higher education, the professionally active, and those living in cities seem to be more aware of their rights. The proper solution could be to introduce corrections in oncological organization to avoid the need of using private services. Legal entity responsible for the study: The authors. Funding: Has not received any funding. Disclosure: All authors have declared no conflicts of interest.
Results: Overall, 156 concepts were distributed among 10 themes (bureaucracy, medical care, domestic economy, emotion, family, job, health workers, welfare state, free time, transportation). After controlling for redundancy, 55 candidate items were generated and 30 items, with at least one per each theme, remained after importance analysis. Out of the 30 items, 23 (77%) refer to material conditions, 4 (13%) to psychological response, and 3 (10%) to coping behaviors. Conclusions: The first results of the proFFiT project show that most of the items selected by patients are related to material conditions that cause, or derive from, financial hardship. The final questionnaire will be ready by the end of 2019. Supported by Fondazione AIRC IG grant 2017-20402. Clinical trial identification: NCT03473379. Legal entity responsible for the study: Istituto Nazionale per lo Studio e la Cura dei Tumori Fondazione Pascale IRCCS, Naples, Italy. Funding: Fondazione AIRC IG grant 2017-20402. Disclosure: S. Riva: Honoraria (self): CSL-Behring; Honoraria (self): GlaxoSmithLine Foundation.