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Cancer Registration

Cancer Registration. Oncology Team Tulip Integrated Cancer Clinic Dr Sardjito General Hospital. TULIP integrated cancer clinic. Funded by Dutch Cancer Foundation ( KWF ) Operated since 2001 Service: adult oncology cases. Multi-disciplinary approach . Number of cancer visits.

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Cancer Registration

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  1. Cancer Registration Oncology Team Tulip Integrated Cancer Clinic Dr Sardjito General Hospital

  2. TULIP integrated cancer clinic • Funded by Dutch Cancer Foundation (KWF) • Operated since 2001 • Service: adult oncology cases. • Multi-disciplinary approach.

  3. Number of cancer visits

  4. Top 5 visits in 2012

  5. Oncology management stillspreads in separated units Treatment First visit Diagnostic Chemotherapy in general wards and one day care “Tulip” Cancer clinic Radiodiagnostics Other clinics (departs of surgery, gynaecology, ENT, pulmonology, etc) Dx Lab and supports Pathology, Molecular biology, immunology, clinical chemistry, cytogenetics Surgery Radiotherapy

  6. Tulip cancer clinic and radiotherapy have particular medical records

  7. Background • Cancer registration has not been comprehensively done. • Systematic collection of data for every cancer patient have not been registered well. • Bottleneck includes • commitment to persist the work • lack dedicated person in doing documentation • financial support • Lack information to support policy in improving cancer management. • A small registration has been started in Tulip.

  8. Tulip cancer registration • It started in 2012. • Research intention. • Aim: • cancer incidence • success of treatment • comparison of available treatment to the standard, treatment modalities • Case report form – based. • Involves data from 2007-2011 on 4 cancer types: • Breast cancer - Colorectal cancer (CRC) • Nasopharyngeal cancer (NPC) - Multiple myeloma (MM) • Principle: starts small and grows. Other types of cancer will be registered as well.

  9. (Non-official) organization Head of subdepart of hematology and medical oncology Head of Tulip cancer clinic Data coordinator - CRC (subspecialty fellow) Data coordinator - NPC (subspecialty fellow) Data coordinator – breast ca (subspecialty fellow) Data coordinator - MM (subspecialty fellow) Data manager – NPC Research assistant Data manager - CRC Research assistant Data manager – Breast Research assistant Data manager – MM Research assistant

  10. Items on Case Report Form • Demography (Patient’s Initial, Patient’s Code, Tulip/RSUP Dr. Sardjito MR, Date of Birth, Age, Address, Contact Number, Address Type, Sex, Occupation, Education Level, Funding, Risk Factors, Past History) • Diagnosis (Visit Type, Chief-complaint, Early Sign, First Party Treating Chief-complaint, Chief-complaint to Medical-attention Period, Early-detection to Surgery Period, Surgery to Chemotherapy Period, Early-detection, Additional Tests, Performance Status, Clinical Diagnosis, Pathological Diagnosis) • Therapy (Surgery, Chemotherapy, Radiotherapy, Additional Tests, Toxicity) • Post-therapy Monitor (Treatment Response, Event) • Second-line therapy* (Indication, Type, Regimen, Start Date, End Date, Duration, Cycle, Additional Tests, Toxicity) • Post-Second Line Therapy Monitor (Treatment Response) • Consecutive Therapies • Follow-up (Latest Follow-up Date, Final Status, Overall Survival, Disease Free Survival, Progression Free Survival) • Other Analysis (Metastasis, Biomarkers, Comorbidity)

  11. Flow of data collection Medical Record (Tulip Integrated Cancer Clinic) Data verification and exclusion Medical Record (RSUP Dr. Sardjito) Case Report Form Data completion and verification Excell database SPSS Analysis

  12. Interim results

  13. Number of cases of the 4 cancer types 387 88 70 65 59 57 57 42 38 18 20 17 9 8

  14. Age distribution (breast ca)

  15. Age distribution (CRC)

  16. Age distribution (NPC)

  17. Age distribution (MM)

  18. Sex distribution

  19. Histology grading (breast cancer)

  20. Histology grading (CRC)

  21. Histology grading (NPC)

  22. Treatment modality (Breast cancer)

  23. Treatment modality (CRC)

  24. Treatment modality (NPC)

  25. Treatment modality (MM)

  26. Overall survival (CRC)

  27. Overall survival (NPC)

  28. Data of CRC on SRiKanDi (n= 173)

  29. CRC on SRiKanDi (topography)

  30. Data of CRC on SRiKanDi (morphology)

  31. Challenges • MR searching • Often takes days to find and get them ready for data entry • Incomplete information (either in Tulip or central MR) • Data discordance • Loss to follow up  needs mail and call checking. • Registration technical trainings • Multiple data sources • Funding and organization

  32. Can we set up such organization? RSKN Dharmais (1996-now)

  33. Further steps • Consolidation with other departments (Indonesian society of oncologist, Yogyakarta branch) • Surgeon (oncology surgeon) • Radiology (diagnostic and radio-oncology) • Pathology • Pediatric • Etc • Study on data collection and administration in order to perform hospital-based cancer registration (Guardian YS, MD, MHealthinfo) • Trainings • Set up organization • Learn from other centers (Dharmais, overseas) • Fund raising (self-funded  grant attract)

  34. Acknowledgement Project leader Johan Kurnianda, MD (hematologist-medical oncologist) Steering committee Teguh Aryandono, MD, PhD, Prof. (oncology surgeon) Kartika Widayati, MD – Head of Tulip clinic (hematologist-medical oncologist) Ibnu Purwanto, MD (hematologist-medical oncologist) Kunta Setiaji, MD – Chief of cancer committee (oncology surgeon) Multidisciplinary oncology team for cancer registry Artanto, MD (oncology surgeon) Wigati D, MD (radio-oncologist) Retno Dwi D, MD, (radio-oncologist) Henry Kusumo, MD (radiologist) Lina Choridah , MD (radiologist) Ediati, MD (pathologist) Ghozali, MD (pathologist) Eddy Supriyadi, MD, PhD (pediatrician, oncologist) Nungki Anggorowati, MD, PhD (pathologist) Bambang Hariwiyanto, MD, PhD (ENT oncologist) Sagung Rai Indrasari, MD (ENT oncologist) Camelia Herdini, MD (ENT oncologist) Burham W., MD (gynaecology oncologist) Lutfan Lazuardi, MD, PhD (health informatics) Guardian Y S, MD, MHealthinfo (health informatics) Fatwasari Tetra Dewi, MD, PhD Etcs. Data coordinator Susanna H. Hutajulu, MD, PhD (Internist) Mardiah Suci H, MD, PhD (Internist) Femiko Mora, MD (Internist) Suryo A Taroeno, MD (Internist) Data manager Wahyu Wulaningsih, MD, MRes. Naomi Yoshuantari, MD Zulrahman, MD Sri Wahyuni, Public health

  35. Data of CRC on SRiKanDi (ICD 10)

  36. Overall survival (Breast cancer)

  37. Overall survival (MM)

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