Cancer Registration

Oncology Team Tulip Integrated Cancer ClinicDr 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

Top 5 visits in 2012

Oncology management stillspreads in separated units

Radiodiagnostics

Radiotherapy

Chemotherapy in general wards and one

day care “Tulip”

Dx Lab and supportsPathology,

Molecular biology, immunology, clinical chemistry, cytogenetics

Cancer clinic

Other clinics(departs of surgery,

gynaecology, ENT, pulmonology,

etc)

Surgery

First visit Diagnostic Treatment

Tulip cancer clinic and radiotherapy have particular medical records

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.

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.

(Non-official) organization

Head of subdepart of hematology and medical oncology

Data coordinator - CRC(subspecialty fellow)

Data coordinator - MM

(subspecialty fellow)

Data coordinator - NPC

(subspecialty fellow)

Data coordinator – breast ca

(subspecialty fellow)

Data manager - CRCResearch assistant

Data manager – NPCResearch assistant

Data manager – MMResearch assistant

Data manager – Breast Research assistant

Head of Tulip cancer clinic

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)

Flow of data collectionMedical Record

(Tulip Integrated Cancer Clinic)

Medical Record (RSUP Dr. Sardjito)Case Report Form

Excell database

SPSS

Analysis

Data verification and exclusion

Data completion and verification

Interim results

Number of cases of the 4 cancer types

387

8

38

57

9

59

88

65

18

70

17

4257

20

Age distribution (breast ca)

Age distribution (CRC)

Age distribution (NPC)

Age distribution (MM)

Sex distribution

Histology grading (breast cancer)

Histology grading (CRC)

Histology grading (NPC)

Treatment modality (Breast cancer)

Treatment modality (CRC)

Treatment modality (NPC)

Treatment modality (MM)

Overall survival (CRC)

Overall survival (NPC)

Data of CRC on SRiKanDi (n= 173)

CRC on SRiKanDi (topography)

Data of CRC on SRiKanDi (morphology)

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

Can we set up such organization?

RSKN Dharmais (1996-now)

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)

Acknowledgement

Data coordinator Susanna H. Hutajulu, MD, PhD (Internist) Mardiah Suci H, MD, PhD (Internist)Femiko Mora, MD (Internist)Suryo A Taroeno, MD (Internist)

Project leaderJohan Kurnianda, MD (hematologist-medical oncologist)

Data managerWahyu Wulaningsih, MD, MRes.Naomi Yoshuantari, MDZulrahman, MDSri Wahyuni, Public health

Multidisciplinary oncology team for cancer registryArtanto, 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, PhDEtcs.

Steering committeeTeguh 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)

Data of CRC on SRiKanDi (ICD 10)

Overall survival (Breast cancer)

Overall survival (MM)