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3 监测信息收集内容

3.1 纳入标准

3.1.1 监测对象

0~19周岁肿瘤出院患儿。

3.1.2 监测疾病

全部恶性肿瘤、良性肿瘤、原位癌、动态未定或未知的肿瘤,以及第一批国家救治病种,包括再生障碍性贫血、免疫性血小板减少症、血友病、噬血细胞综合征。归档后住院病例主诊断或其他诊断的疾病编码(ICD-10)前三位“解剖学部位”符合监测疾病范围(附录)。

3.2 登记变量

监测点根据报告卡进行病例登记和信息上报。报告卡的内容主要包括基本信息、入出院信息、诊断信息、治疗信息、住院费用信息等(表2-3-1)。

表2-3-1 儿童肿瘤病例报告卡主要登记变量

Table 2-3-1 Primary registering variables of pediatric cancer case report cards

注:ICD-O,国际肿瘤学疾病编码(International Classification of Disease for Oncology)

Chapter 2
Methods and contents of National Pediatric Cancer Surveillance

1 Establishment of pediatric cancer surveillance sites

Pediatric cancer surveillance sites are set up in medical institutions that carry out diagnosis and treatment of children’s cancer. With the policy support of the NHC, a total of 384 surveillance sites in 31 provinces(autonomous regions, municipalities directly under the central government)and Xinjiang Production and Construction Corps have been included in the pediatric cancer surveillance system. The surveillance sites are divided into 199 designated institutions and 185 non-designated institutions according to whether the surveillance sites are national treatment institutions designated for child hematopathy and cancers. According to their specialties, the institutions are divided into 295 general hospitals, 57 children’s hospitals, child and maternal healthcare institutions, 21 cancer hospitals and 11 others. They are divided into 338 tertiary hospitals, 43 secondary hospitals and 3 others by institutional level (Figure 2-1-1).

2 Collection methods of surveillance information

2.1 Organization and implementation of surveillance work

The NHC is responsible for guiding the establishment of the national pediatric cancer surveillance system, organizing, coordinating, and supervising national pediatric cancer surveillance. The NCPCS is responsible for the implementation and promotion of pediatric cancer surveillance nationwide, which collects, checks, analyzes and evaluates the surveillance data. The health commissions of provinces, autonomous regions, and municipalities directly under the central government are responsible for coordinating medical institutions for pediatric cancer to actively integrate themselves into the surveillance system in their respective districts, and supervising and regularly reporting the work of surveillance sites in their respective districts. Surveillance sites are responsible for the registration and reporting of the pediatric cancer case report cards (hereinafter referred to as the report cards) every month.

2.2 Implementation methods of surveillance work

2.2.1 Form of information reporting

The registration of pediatric cancer cases is carried out in the form of direct online reporting. The NCPCS has established the National Platform for Pediatric Cancer Surveillance (hereinafter referred to as the surveillance platform), through which the surveillance sites directly report their information to the surveillance center.

2.2.2 Methods of information reporting

Case registration and reporting can be carried out through three methods: manual filling, file import, and port docking. The surveillance sites can choose any method (s) to carry out the work according to the requirements of the NHC and their actual situation.

2.2.3 Department of information reporting

According to The Notice on Better Treatment and Management of Major Pediatric Diseases (Medical Letter No. 22 of the NHC [2020]) issued by the General Office of the NHC,“Persons in charge of relevant medical institutions are the main responsible persons for information submission. The medical record management department is responsible for information registration and data quality management, and should cooperate with the information management department to promote the port docking of information system.”Surveillance sites shall be equipped with relevant persons in charge to carry out registration and reporting of report cards as required.

2.2.4 Process of information reporting

The surveillance sites are equipped with registrars and reviewers of report cards. Registrars are responsible for importing, refilling, and submitting the report cards. Reviewers are responsible for reviewing the report cards and submitting them to the NCPCS. The surveillance center is responsible for the quality control and data collection of the report cards, as well as the regular writing of reports and release of statistical results (Figure 2-2-1).

3 Collection contents of surveillance information

3.1 Inclusion criteria

3.1.1 Objects under surveillance

Children aged between 0 and 19 with cancer discharged from hospital.

3.1.2 Diseases under surveillance

All cancers, benign tumors, carcinoma in situ , dynamic undetermined or unknown tumor, as well as the first batch of nationally treated diseases, including aplastic anemia, immune thrombocytopenia, hemophilia, and hemophagocytic syndrome; the first three ICD-10 digits of the main or other diagnosed diseases of archived hospitalized cases represent anatomical sites within the scope of surveillance (Appendix).

3.2 Registering variables

The surveillance sites register and report the cases according to the report cards. The report cards mainly include basic information and information about admission and discharge, diagnosis, treatment, and hospitalization expenses, etc.(Table 2-3-1). 5md5/Ix0Lz4lpOx9cTCdkPx0i4G1il+hvNtVbzp9u/uOg5V4fwZTXaEhQqopuhKy

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