Surveillance Evaluation of the National Cancer Registry in Sabah, Malaysia

Jeffree, Saffree Mohammad,Mihat, Omar,Lukman, Khamisah Awang,Ibrahim, Mohd Yusof,Kamaludin, Fadzilah,Hassan, Mohd Rohaizat,Kaur, Nirmal,Myint, Than Asian Pacific Journal of Cancer Prevention 2016 Asian Pacific journal of cancer prevention Vol.17 No.7

Background: Cancer is the fourth leading cause of death in Sabah Malaysia with a reported age-standardized incidence rate was 104.9 per 100,000 in 2007. The incidence rate depends on non-mandatory notification in the registry. Under-reporting will provide the false picture of cancer control program effectiveness. The present study was to evaluate the performance of the cancer registry system in terms of representativeness, data quality, simplicity, acceptability and timeliness and provision of recommendations for improvement. Materials and Methods: The evaluation was conducted among key informants in the National Cancer Registry (NCR) and reporting facilities from Feb-May 2012 and was based on US CDC guidelines. Representativeness was assessed by matching cancer case in the Health Information System (HIS) and state pathology records with those in NCR. Data quality was measured through case finding and re-abstracting of medical records by independent auditors. The re-abstracting portion comprised 15 data items. Self-administered questionnaires were used to assess simplicity and acceptability. Timeliness was measured from date of diagnosis to date of notification received and data dissemination. Results: Of 4613 cancer cases reported in HIS, 83.3% were matched with cancer registry. In the state pathology centre, 99.8% was notified to registry. Duplication of notification was 3%. Data completeness calculated for 104 samples was 63.4%. Registrars perceived simplicity in coding diagnosis as moderate. Notification process was moderately acceptable. Median duration of interval 1 was 5.7 months. Conclusions: The performances of registry's attributes are fairly positive in terms of simplicity, case reporting sensitivity, and predictive value positive. It is moderately acceptable, data completeness and inflexible. The usefulness of registry is the area of concern to achieve registry objectives. Timeliness of reporting is within international standard, whereas timeliness to data dissemination was longer up to 4 years. Integration between existing HIS and national registration department will improve data quality.

Pancreatic Cancer Incidence and Mortality Patterns in China, 2009

Chen, Wan-Qing,Liang, Di,Zhang, Si-Wei,Zheng, Rou-Shou,He, Yu-Tong Asian Pacific Journal of Cancer Prevention 2013 Asian Pacific journal of cancer prevention Vol.14 No.12

Objective: To estimate the incidence and mortality rates for pancreatic cancer in China. Methods: After checking and reviewing the cancer registry data in 2009 from 72 cancer registry centers, we divided cancer registry areas into urban and rural areas. Incidence/mortality rates, age-specific incidence/mortality rates, age-standardized incidence/mortality rates, proportions, and cumulative incidence/mortality rates for pancreatic cancer were calculated. Results: The total number of newly diagnosed pancreatic cancer cases and deaths in 2009 were 6,220 and 5,650, respectively. The crude incidence rate in all cancer registry areas was 7.28/100,000 (males 8.24, females 6.29). The age-standardized incidence rate by Chinese standard population (ASR) was 3.35/100,000, with ranking at 7th among all cancers. Pancreatic cancer incidence rate was 8.19/100,000 in urban areas whereas it was 5.41/100 000 in rural areas. Cancer mortality rate in all cancer registry areas was 6.61/100,000 (males 7.45; females 5.75), with ranking at 6th among all cancers, and 7.42/100 000 in urban but 4.94/100000 in rural areas. Conclusions: Pancreatic cancer incidence and mortality rates have shown a gradual increase in China. Owing to the difficulty of early diagnosis, identification of high-risk population and modification of risk factors are important to reduce the burden of pancreatic cancer.

한국인 암 발생 통계 연구의 의사학적 고찰

이국 ( Kook Lee ) 연세대학교 의과대학 의사학과 의학사연구소 2015 연세의사학 Vol.18 No.2

Statistical studies on cancer in Korea were historically reviewed based on the literature available from the Japanese colonial period (1910-1945) until the start of the national cancer registry (1980). A total of 15 papers reported on the cancer incidence statistics of Koreans: four during the Japanese colonial period (1910-1945), only one during the liberation, the Korean War, and the post-war reconstruction period (1945-1958), eight from the establishment of the Korean Cancer Research Association (KCRA) until its reorganization as the Korean Cancer Association (KCA) (1958-1973), and thereafter, two to the start of the national cancer registry (1973-1980). During the Japanese colonial period, Dr. Ludlow, Dr. Choy, and Dr. Lee et al. from the Severance Union Medical College carried out statistical studies on cancer for the purpose of obtaining clues to its causes and of developing preventive measures for Korean people under impoverished conditions. Research activities resumed after the Korean War with the establishment of the KCRA in 1958. The Journal of the KCRA and the Korean Journal of Pathology were founded in 1966 and 1967, respectively. The KCRA was reorganized as the KCA in 1973. During the period of 1925-1939 and the period of 1959-1973, breast cancer and specific infection- related cancers such as gastric, hepatic, and cervix uterine cancer remained the leading primary cancers. But in the period 1959-1973, skin and penile cancers decreased in frequency, whereas colorectal, upper respiratory tract and lung cancers increased. This finding might be associated with changes in the medical environment, for example, an increase in the number of cancer-specific clinics, the usage of CT as a diagnostic tool, and housing and working environments and life- styles as a result of economic development from 1960 to the 1970s. In 1980, the Korean Ministry of Health and Welfare started a nationwide hospital-based cancer registry and published the annual report of the national cancer registry. In 1999, the national cancer registry expanded cancer registration to cover the entire population in collaboration with the population-based regional cancer registry for national cancer incidence statistics. The cancer statistical studies from the university hospitals in Korea provided not only reference data for estimating cancer incidence among Koreans but also useful data for comprehending the etiology, diagnosis, treatment and prevention of cancer. They also made a valuable contribution to the start and establishment of the national cancer registry.

한방의료기관 환자진료부에 의한 암환자 현황에 대한 연구

조경숙,신현규,Cho, Kyung-Sook,Shin, Hyeun-Kyoo 대한암한의학회 2003 大韓癌韓醫學會誌 Vol.9 No.1

Objectives : The former study of Oriental Medicine on cancer has been mostly focused on lab studies with herbal medicine. Among this atmosphere, the aim of this study is to investigate the suitability of Oriental Medicine institutions to participate in cancer registry programme in R.O.K by investigating the type of treatments used for cancer patients in Oriental Medicine institutes. Methods : To investigate the actual conditions of cancer patients who visited Oriental Medicine institutes, a survey was done based on clinical charts of 258 patients of cancer. Results : The order for the percentage of the original tumor organ of the patients, the number of patients who recognized the outbreak on the year of the first visit was the biggest, and the number gradually decreased while the years passed. For the type of treatment, herbal medicine was the most for 92.6%, acupuncture 52.6%, moxibustion 16.7%, cupping 14.7%. It can be seen that multiple treatment was preferred to single treatment. Among the periods for herbal medication, 10 days was the most for 34.1%, 29.8% for within 50 days and 10.5% for within 100 days. The percentage of patients who took treatment of western medicine at the same time and those who took treatment of Oriental medicine only was 47.4% and 43.8% respectively. By surveying categories such as the symptoms, diagnosis of syndrome, principle of treatment from the chart by a free description, there was 841 names of symptoms, 207 diagnoses of syndromes and 206 principles of treatment. But no relation or connection between these could be found statistically. At there were even occasions which the doctor didn't record the cancer itself, precise investigatio for the actual condition of cancer patients in Oriental Medicine institutions appeared to be very difficult. Conclusions : It seems impossible to enroll cancer patients of Oriental Medicine institutions to the cancer registry programme in R.O.K as far as the patients are recorded only under the paradigm of Oriental Medicine. However, if the Oriental Medicine doctors keep a consistency in classifying categories such as cause of death, syndrome diagnosis, principle of treatment and prescriptions, and limit the choices, for each category, a pilot study for cancer registry programme in R.O.K. in Oriental Medicine could be carried out.

A Comparison of the Cancer Incidence Rates between the National Cancer Registry and Insurance Claims Data in Korea

Seo, Hee Jung,Oh, In-Hwan,Yoon, Seok-Jun Asian Pacific Journal of Cancer Prevention 2012 Asian Pacific journal of cancer prevention Vol.13 No.12

Although much health services research has been conducted using national health insurance claims data in Korea, the validity of this method has not been ascertained. The objective of this study was to validate the use of claims data for health services research by comparing incidence rate of cancers found using insurance claims data against rates of the national cancer registry of Korea. An algorithm to estimate incidence rates using claims data was developed and applied. The claims data from 2005-2008 were acquired and the patients admitted to hospitals due to cancer in 2008 without admission to hospital from 2005-2007 by the same diagnosis code were regarded as incident cases. The acquired results were compared with the values from the National Cancer Registry of Korea. The incidence rate of all cancers found using claims data was 363.1 per 100,000 people, which is very similar to the 361.9 per 100,000 rate of the national cancer registry. Also the age-, gender- and disease-specific rates between the two data sources were similar. Therefore, national health insurance claims data may be a worthwhile resource for health services research if appropriate algorithms are applied, especially considering the cost effectiveness of this method.

강화지역 암의 유병률

이상욱,이강희,김석일,강형곤,지선하,오희철,Yi, Sang-Wook,Lee, Kang-Hee,Kim, Suk-Il,Kang, Hyung-Gon,Jee, Sun-Ha,Ohrr, Hee-Choul 대한예방의학회 1999 예방의학회지 Vol.32 No.3

Objectives: Most descriptive studies of cancer have focused either or cancer incidence or mortality. Cancer prevalence has rarely been estimated. Cancer prevalence data can be used as a measure of the economic and social burden of cancer and are also useful for health care planning. This study attempts to estimate cancer prevalence in Kangwha county. Methods: This investigation is based on data of Kangwha cancer registry. The data include all cases of cancer diagnosed from 1983 through 1992. We define 'prevalent cases' as cancer patients who is alive as of January 1, 1993. For each five-year age group, the number of 'known prevalent cases' is added to the number of 'estimated prevalent cases'. Prevalence is calculated by dividing these sums by the populations of Kangwha County on December 31, 1992(derived from Kangwha Statistics Annual). Results: Crude prevalence of cancel among males and females are 536.7 and 601.1 per 100,000 respectively. Gastric cancer is the most common malignant neoplasm(213.2 per 100,000, crude prevalence) among males. It is followed by lung cancer(45.1 per 100,000), liver cancer(32.8 per 100,000), rectal cancer(25.4 per 100,000) and colon cancer(25.4 per 100,000). Cervical cancer is the most common cancer(201.9 per 100,000, crude prevalence) and is fellowed by gastric cancer(91.5 per 100,000), thyroid cancer(64.8 per 100,000), breast cancer(57.2 per 100,000) and rectal cancer(32.7 per 100,000) among females. Conclusions: We tried to estimate cancer prevalence based on the Kangwha cancer registry for the first time in Korea. The estimation of cancer prevalence based on a population-based cancer registry will be more correct and useful as the data accumulate. We will make another estimation in the near future. 유병률은 암의 발생과 생존, 사망을 한눈에 파악할 수 있으며, 지역사회에서 암의 영향을 살펴보는데 좋은 지표가 된다. 이 연구에서는 강화암등록사업 자료중 1983-1992년의 10년간의 자료를 이용하여 강화지역 암의 유병률을 추정하였다. 그 연구결과를 요약하면 다음과 같다. 1. 1993년 1월 1일 현재 강화지역에서 전체암의 보통유병률은 남자에서 인구 10만명에 536.7명, 여자에서 10만명에 601.1명이었고, 세계표준인구 연령표준화 유병률은 남자에서 인구 10만명에 436.5명, 여자에서 10만명에 462.1명 이었다. 2. 1993년 1월 1일 현재 남자에서 유병률이 가장 높은 암은 위암으로 보통유병률은 10만명당 213.2명이고, 그 다음이 폐암(10만명당 45.1명), 간암 (10만명당 32.8명), 직장암(10만명당 25.4명), 대장암(10만명당 25.4명)의 순이었다. 3. 1993년 1월 1일 현재 여자에서 유병률이 가장 높은 암은 자궁경부암으로 보통유병률은 10만명 당 201.9명이었고, 위암(10만명당 91.5명), 갑상샘암 (10만명당 64.8명), 유방암(10만명당 57.2명), 직장암(10만명당 32.7명)의 순이었다. 4. 전체암의 발생률은 남자가 여자보다 높았으나, 유병률은 오히려 여자가 남자보다 높았다. 5. 이 연구는 일부 제한점이 있으나 우리나라에서 장기간 지속된 지역사회 암등록 사업에 기초하여 암유병률을 추정한 최초의 연구로서 큰 의의가 있다고 생각한다.

강화지역 암의 발생률(1986-1992)

김소윤,강형곤,김석일,이상욱,오희철,Kim, Soh-Yoon,Kang, Hyung-Gon,Kim, Suk-Il,Yi, Sang-Wook,Ohrr, Hee-Choul 대한예방의학회 1999 Journal of Preventive Medicine and Public Health Vol.32 No.4

Objectives : This paper presents the information on the incidence of cancer from the population-based cancer resistry in Kangwha County. Material and methods : This investigation is based on Kangwha cancer registry. The data included cases of cancer diagnosed from 1986 through 1992. The diagnosis of cancer was confirmed by a team of physicians and nurses with the medical records kept in the clinics and hospitals based on the diagnostic criteria recommended by WHO. Home visitings were also made to cancer patients confirmed in every 6 months for the follow up and for the collection of relevant information directly from the patients. Results : A total of 992 cancer cases were registered during 1986-1992. The age-adjusted cancer incidence rate of all site is 201.7 in men and 110.7 in women. The most common cancer is the stomach cancer in both sexes. The age-adjusted incidence rate of the stomach cancer is 65.9 in men and 25.0 in women per 100,000 population. The lung cancer(33.8) and liver cancer(27.7) are next common cancers in men. The cervical cancer(21.8) and lung cancer(8.4) are next in women. Conclusion : The most common cancer is the stomach cancer in both sexes. The annual age-adjusted incidence rate of the stomach cancer is 65.9 in men and 25.0 in women per 100,000 population. 본 연구의 결과를 요약하면 다음과 같다. 1. 1986년부터 1992년까지 강화지역 주민 중 총 992명의 암 환자가 등록되었고, 이중 남자가 605명(60.9%), 여자가 387명(39.1%)이었다. 2. 세계표준인구로 연령교정한 발생률은 연간 인구 10만명당 남자에서 위암이 65.9, 폐암 33.8, 간암 27.7, 식도암 10.2, 직장암 8.3의 순으로, 여자에서는 위암 25.0, 자궁경부암 21.8, 폐암 8.4, 간암 7.7, 유방암 7.1의 순으로 높았다. 3. 세계표준인구로 연령교정한 주요 암의 부위별 발생률을 1983-1987년과 1988-1992년의 미국 LA지역 한인(韓人), 1988-1992년의 일본 오사카, 중국 상하이의 암 발생률과 비교한 결과 남자에서 가장 많이 발생되는 암은 강화와 1983-1987년 사이의 LA한인, 오사카에서는 위암이었으나 상하이, 1988-1992년의 LA한인에서는 폐암이었다. 여자에서 가장 많이 발생되는 암은 강화와 1983-1987년 사이의 LA 한인, 오사카에서는 남자와 마찬가지로 위암이었으나 상하이, 1988-1992년 사이의 LA한인에서는 유방암이었다. 4. 강화지역의 전체 부위 연령표준화 암발생률은 남자에서는 45세 이후 증가 하다가 75세 이후 감소하는 양상을 띄고 있고, 여자에서는 30세 이후 증가하다가 45세에서 약간 감소한 후 65세까지 증가하고, 75세 이후 감소하는 양상을 보인다.

Coverage, Density and Completeness of Sources used in Tehran Metropolitan Area Cancer Registry: According to the Data of Esophageal Cancer, 2003-2007

Aghaei, Abbas,Najafi, Farid,Mosavi-Jarrahi, Alireza,Ahmadi-Jouibari, Toraj Asian Pacific Journal of Cancer Prevention 2012 Asian Pacific journal of cancer prevention Vol.13 No.8

Background: The completeness of cancer registration is a major validity index of any reported cancer incidence. The present study aimed to evaluate the esophageal cancer incidence registered in the Tehran Metropolitan Area Cancer Registry. Materials and methods: The data on esophageal cancer abstracted from three sources of 1) pathology departments, 2) medical records, and 3) death certificates during 2003 till 2007 were utilized. The completeness of the data sources were evaluated using coverage (defined as the proportion of a community population with esophageal cancer identified by the source) and density (defined as the proportion of non-empty fields of the data by source). Results: A total 1,404 cases of esophageal cancer were reported for the duration of the study. Pathology provided 771, medical records 432, and death certificates 609. The coverage was 0.55 for pathology, 0.31 for medical records, and 0.43 for death certificates. The respective density values were 0.82, 0.96 and 0.98, respectively. Pathology (0.45) was the most complete source followed by medical records (0.42), and death certificates (0.29). Discussion: A low degree of completeness dictates putting more effort into case finding plus abstracting data more thoroughly.

개인 정보 보호에 대한 암 등록 사업의 해결 방안

박범정(Bum Jung Park),주형로(Hyung Rho Joo),박일석(Il-Seok Park),김진환(Jin-Whan Kim),노영수(Young-Soo Rho) 대한두경부종양학회 2007 대한두경부 종양학회지 Vol.23 No.2

Objectives and Background :Aims of this studies are to collect and analyze the lawful restriction against cancer registration and to suggest the model promoting the cancer registry. Materials and Methods :Total 16 countries, the members of OECD, including the U.S. are evaluated. the sta-tus of cancer registration of the evaluated countries are analyzed. The legislated laws, protect the individual’s information, of the evaluated countries are analyzed. The cases any registries were impaired with the law to protect privacy are searched and analyzed. Results :All of the evaluated countries have some kinds of privacy protecting laws. For cancer registration, 11 of 16 countries implement some lawful authorities. Some of countries have experienced restriction of registration by the law of protecting individual’s health data. All countries have performed cancer registry and 6 of 16 countries have nearly 100% population-based cancer registration. Conclusions :The cancer registry has to be the national effort. The informed consent of the data subjects and the permission of any special institutes are the difference to perform the registration. So, it is necessary to legi-slate any law supporting the cancer registration and establish any independent institutes to protect the individual’s health data and support the cancer registry.

암등록과 암관리사업의 최신 국제 경향 및 우리나라 암발생 통계

신해림,Shin, Hai-Rim 대한예방의학회 2008 예방의학회지 Vol.41 No.2

The World Health Organization (WHO) reported that cancer killed 7.6 million people in the world in 2005, and that 40% of all cancer deaths can be prevented. According to the WHO Global Action Plan Against Cancer (GAPAC), monitoring of cancer patients is the essential part of cancer control, and should be conducted through cancer registration. Originally, cancer registries were primarily concerned with the description of cancer patterns, trends of cancer occurrence, and etiology of cancer. In the last 20 years, cancer registries provided not only information on the incidence and characteristics of specific cancers, but also supplied the source of cancer control planning and evaluation and the care of individual cancer patients with survival. Cancer Incidence in Five Continents (CI5) presents incidence data from populations all over the world every five year. Volume IX in the series (data for 1998-2002) has recently (November 2007) been published online at International Agency for Research on Cancer (IARC). Nine data from Korea Central Cancer Registry (National data), Seoul, Busan, Daegu, Gwangju, Incheon, Daejeon, Usan, Jejudo regional cancer registries were included in that volume. In this paper, the editorial process, the characteristics of national data, and quality indices in CI5 IX are being described. In addition, cancer control activities related to cancer registration in some selected countries are also presented.