Indonesia Cancer Registry, Current Situation

Indonesia Cancer Registry.Current Situation

Evlina Suzanna,MDCoordinator Collecting and Data Analysis of Indonesia National Cancer Registry. Department of Health

Number of Population and Province in Indonesia.(Sensus 2005)

33 Provinces 218.086.288 PopulationM : 109.613.519F : 108.472.769

0

5,000,000

10,000,000

15,000,000

20,000,000

25,000,000

Aceh

West S

umate

raJa

mbi

Bengk

uluBab

el DKI

Centra

l Jav

a

East J

ava

Bali

East N

T

Sentra

l Kalm

East K

alm

Sentra

l Sul

South

East S

ul

West S

ul

North M

al

Papua

Provinces

Num

ber Male

Female

Distribution of Population in Indonesia

History of Cancer Registry In Indonesia2006 Hospital Based Cancer Registry in Jakarta as a model à Population Based Cancer Registry.

1987 Pathological based Cancer Registry, 13 Centers Diagnostic of Pathology in Indonesia

1970 Population based Cancer Registry in Semarang, Central Java.

Population Based Cancer Registry

Semarang, 1970

KLATEN,1998

The 10 Commonest Malignancy in Semarang, 1990 -1999.

2.052.67

3.013.26

4.64.83

5.166.26

14.8421.77

0 5 10 15 20 25

Thyroid

Lymphoma

Corpus Uteri

Unknown

Skin

Lung

Ovarium

Colorectal

Breast

Cervix

Topo

ASR

1.18

2.82

3.62

3.62

3.78

4.69

5.63

5.65

6.76

14.08

0 2 4 6 8 10 12 14 16

Thyroid

Unknown

Lymphoma

Skin

Nasopharyx

Vesica Urinary

Prostat

Liver

Colorectal

Lung

Topo

ASR

Female Male

Prof Sarjadi,MD.Pathologist.

1988 IAP Indonesia,13 Centers Diagnostic of Pathology

1. Medan.

2. Padang

3.Palembang

4. Jakarta

5. Bandung

13 Manado

8. Semarang9. Surabaya

10. Malang

7. Yogjakarta

6. Surakarta

11 Bali

12 Makassar

The 10 commonest cancer in Indonesia 13 Centers of Pathology 1990 – 1999.

0

500

1000

1500

2000

2500

3000

3500

4000

4500

1990 1991 1992 1993 1994

Cervical cancerBreast cancerSkin cancerNPCOvarial cancerLymphoma malignumRectal carcinomaThyroid carcinomaSTSsColon carcinoma

The 10 Commonest Cancer in Indonesia 13 Centers of Pathology 1990 – 1999.

0

500

1000

1500

2000

2500

3000

3500

4000

4500

1995 1996 1997 1998 1999

Cervical cancerBreast cancerSkin cancerNPCOvarial cancerLymphoma malignumRectal carcinomaThyroid carcinomaSTSsColon carcinomaLung cancer

THE TEN COMMONEST MALIGNANCY in "DHARMAIS" NATIONAL CANCER CENTER 1995 - 2004

0

50

100

150

200

250

300

350

1995 1996 1997 1998 1999 2000 2001 2002 2003 2004

YEARS

NUMB

ER

Cervical Cancer

Nodal Lymphoma

Breast Cancer

Skin Cancer

Colorectal Cancer

Ovarial Cancer

Nasopharynx

Leukemia

Bronchus and Lung

Soft Tissue Sarcoma

Bone Sar coma

Ca Corpus Uteri

Thyroid Gland

GLOBAL DEATHS BY CAUSE, ALL AGES 2005

***Sumber: WHO dan WorldBank 2005

CARDIO-VASCULARDISEASES

CANCER

CHRONICRESPIRATORY

DISEASE

DIABETES

17.528.000

7.586.000

4.057.000

1.125.000

MALARIATUBER-

CULOSIS

HIV/AIDS

883.0001.607.000

2.830.000

Trend of Pattern of diseases causing death in decade in Indonesia

SKRT 1992, 1995, 2001

0

5

10

15

20

25

30

35

Inf & Par Sirkulasi Pernapasan Sal. Cerna Neoplasma Kecelakaan Perinatal

1992 1995 2001

Percentage

Report of SKRT 2001: Morbidity & Disability study, Litbangkes 2002

DefinitionCancer registration may be defined as the

process of continuing, systematic collection of data on the occurrence and characteristics of reportable neoplasms

The cancer registry is in the office orinstitution which attempts to collect, store, analyze and interpret data on persons with cancer.

The main objective of the cancer registry

• To collect and classify information on all cancer cases in other to produce statistics on the occurrence of cancer in a defined population and

• To provide a framework for assessing and controlling the impact of cancer on the community

Source of DataSource of Data

CLINICS

HOSPITAL

LABORATORIES

VITAL STATISTICSDEATH CERTIFICATES

Hospital 6HB6

Hospital 1HB1

Hospital 2HB2

Hospital 3HB3Hospital 5

HB5

Hospital n..Hb n...

Hospital 4HB4

PB

case 6

PB= population-based HB= hospital-based

case 1

case 5

Case 3

case 2

case 4

Case n..

Case 61

Case51

Case 31

PB = case 1-6, n..HB3= case 3, 31

Cancer Incidence in IndonesiaNew cases of cancerAsAbsolute numbersProportion (percent) of totalRate per (100.000) population at risk, per (year)

??

?? ?

?

Measuring the Burden of cancerin Indonesia

• Incidence• Mortality• Person-years of life lost (PYLL)• Quality adjusted life years (Lost) (QALYs).• Disability adjusted life years (Lost) (DALYs)• Survival• Prevalence

MOH of RI Organization Structure, 2006

DG of Disease Control & EH

Directorate VBDC

Directorate of NCDC

Directorate of EH

Directorate of SESPIM

Secretary of DG of DC & EH

Subdit Cardiovas

Subdit. DM & Other Metabolic

SubDit Cancer

Subdit. Chronis &

degenerative

Subdit. Violence &

Injury

Directorate of DCDC

Ministry of Health

DG of Public Health

Inspectorate General

DG of Medical Services

Secretary General

DG of Pharmacies & med-supp

Revitalization ofJakarta Cancer Statement

By WHO SEARO, UI, UICC and Presiden Soeharto

in 1995 à Action Plan.

On 10th-11th there will be the launching of Indonesia NCCPs by DNCC and MOH, together with all Health Professional, NGOs to unify theActivities in Cancer Control Programmes. All the parties concern will make action plan for the coming years.

• Undang-Undang RI No : 29 th 2004 ttg Praktek Kedokteran (Psl 46) àwajib membuat Rekam Medis.

• Kepmenkes RI No.604/Menkes/SK/IX/1989 ttg Pokok-pokok penanggulangan penyakit kanker di Indonesia à Registrasi kanker

• Kepmenkes RI No: 1575/Menkes/Per/XI/ ttg Organisasi dan Tata kerja Depkes RI àDirektorat PPTM (Subdit kanker).

Legal Aspect

STRUKTUR ORGANISASI RUMAH SAKIT KANKER DHARMAIS JAKARTA

DIREKTURUTAMA

DIREKTUR MEDIK DAN KEPERAWATAN

DIREKTURSUMBER DAYA MANUSIA

DAN PENDIDIKAN DIREKTUR

UMUM DAN OPERASIONAL

DEWAN PENGAWAS

LAMPIRAN PERATURAN MENTERI KESEHATAN R.I.NOMOR : 1684/Menkes/Per/XII/2005.TANGGAL: 27 Desember 2005

MENTERI KESEHATAN,

Dr. dr. Siti Fadilah Supari, Sp.JP (K)

BIDANGMEDIK

BIDANGKEPERAWATAN

BIDANGREKAM MEDIK

SEKSIPELAYANAN -MED

SEKSI RAWAT JALAN

SEKSICATATAN MEDIK

SEKSIPENUNJANG

MEDIK

SEKSIRAWAT INAP

SEKSIADMISI

SEKSIPENING & PENGEN

DALIAN MUTU YAN.MED.SEKSI

RAWAT KHUSUS

BAGIANUMUM

BAGIANPROGRAM DAN

SIM RS

BAGIANPELAY PELANGGAN

SUBBAGIANTATA USAHA

SUBBAGIANPENGEMBANGAN

SIM RSSUBBAGIAN

PROMOSI

SUBBAGIANRUMAH TANGGA &

HUMAS

SUBBAGIANPENYUSUNAN

PROGRAM

SUBBAGIANPENGEMBANGAN

USAHA

BAGIANS D M

BAGIANPENDIDIKAN DAN

PELATIHAN

BAGIANPENELITIAN DANPENGEMBANGAN

SUB BAGIANADM.INISTRASIKEPEGAWAIAN

SUB BAGIANPENGELOLAAN

DIKLATSUB BAGIANPENELITIAN

SUB BAGIANPENGEMBANGAN

SDM

SUB BAGIANPENGELOLAANSARANA DIKLAT

SUB BAGIANPENGEMBANGAN

SARANA PENELITIAN

SUB BAGIANPERPUSTAKAAN

DAN DOKUMENTASI

INSTALASIINSTALASIINSTALASI

INSTALASIINSTALASIINSTALASI

INSTALASIINSTALASIINSTALASI

SUBBAGIANDATA DANLAPORAN

INSTALASIINSTALASISTAF MEDIK

FUNGSIONAL

SEKSIPENGKODEAN DAN

PENYIMPANAN

SUB BAGIANPERENCANAAN

SDM

SUB BAGIANREGIS TRASI

KANKER

SUBBAGIANPERLENGKAPAN

SUBBAGIANPEMASARAN

KOMITEMEDIK

KOMITEETIK DANHUKUM

SATUANPEMERIKSA

INTERN

DIREKTURKEUANGAN

BAGIANPENYUSUNAN &

EVALUASI ANGGARAN

BAGIANPERBENDAHARAAN& MOBILISASI DANA

BAGIANVERIFIKASI &AKUNTANSI

SUBBAGIANPENYUSUNAN

ANGGARAN

SUBBAGIANPERBENDAHARAAN

SUBBAGIANAKUNTANSI KEUANGAN

SUBBAGIANEVALUASI

ANGGARAN

SUBBAGIANMOBILISASI DANA

SUBBAGIANVERIFIKASI &AKUNTANSIMANAJEMEN

Working Programmes 2007-2008

Training/Socialization 28 Hospts à40 Hospts DKI Jaya

Hospital based àPopulation based : 2005 2006 2007 à 2008

Software CanReg4 – SRiKandI (32variables)Hardware Computers, Server, Networking device.Brainware Registrar, Pathologist, Oncologist,

Specialist, GP, Statistician, etc

Office space/archives With special permit/restricted room.

Funding National/Province budged/ Hospital/ WHO, Others

Capital city of Indonesia : Jakarta

Indonesia (2005) 218.086.288 Population

1,408,711 75- 1,462,776

1,470,205 70- 1,570,199

1,990,762 65- 2,192,385

2,800,974 60- 2,918,499

3,813,793 55- 3,563,361

5,266,079 50- 4,851,176

6,418,712 45- 6,190,218

7,401,933 40- 7,347,511

8,344,025 35- 8,428,967

8,709,370 30- 9,054,955

9,271,546 25- 9,821,617

9,754,543 20- 10,150,607

10,370,890 15- 9,958,783

11,238,221 10- 10,614,026

11,370,615 5- 10,739,089

9,983,140 0- 9,608,600

109,613,519 TOTAL 108,472,769

Male (%) Female (%)

0 2,000,000 4,000,000 6,000,000 8,000,000 10,000,000

12,000,000

-12,000,000

-10,000,000

-8,000,000

-6,000,000

-4,000,000

-2,000,000

0 12 10 8 6 4 2 0 0 2 4 6 8 10 12

Indonesia, Jakarta (2005)

21,090 75- 24,843

33,549 70- 41,589

59,524 65- 57,523

88,452 60- 77,440

132,016 55- 130,224

201,932 50- 186,628

244,639 45- 230,399

307,293 40- 307,977

416,885 35- 356,711

451,377 30- 445,717

505,945 25- 536,794

485,929 20- 549,923

358,987 15- 426,285

353,062 10- 375,802

366,009 5- 350,138

364,057 0- 350,508

4,390,746 TOTAL 4,448,501

Male (%) Female (%)

0 100,000 200,000 300,000 400,000 500,000 600,000-600,000

-500,000

-400,000

-300,000

-200,000

-100,000 0 600 500 400 300 200 100 0 0 100 200 300 400 500 600

Distribution of Jakarta Population

0

1,000,000

2,000,000

3,000,000

4,000,000

5,000,000

6,000,000

7,000,000

8,000,000

9,000,000

Number

Jakarta Centrl East West North South

Region

Male

FemaleTotal

Mortality in Jakarta in 2006

Cancer Mortality Among Total Death in Jakarta in 2006 ( 4 Hospitals)

40 Hospitals in Jakarta Cancer Registry as a ModelNational Cancer Registry PM.01.02/V/530/07

RSUPN Cipto MangunkusumoRSAL MitoharjoRSPAD Gatot Subroto( Reg of Central)RSIslam JakartaRS Tria DipaRS CarolusRS Keramat 128RS HusadaRSB Budi KemuliaanRS PGI CikiniRSK Dharmais (NCCPs), (Reg of West)RSK RS CengkarengRS TarakanRSAB HarKit (Childhood Cancer Reg)RS PluitRS Sumber warasRS Pelni PetamburanRS Koja (Regional of North)RS Pantai Indah KapukRS Mitra Klp Gading

RS ATMAJAYARS Gading PluitRS Fatmawati (Regional of South)RS MMCRS MedistraRS Pondok IndahRS TebetRS JakartaRS Pusat PertaminaRS Persahabatan (Regional of East)RS POLRI PusatRS Budi ASIHRS UKIRS Mitra InternationalRS Haji JakartaRS Dharma NugrahaRS Omni Medical centerRS Islam Jakarta TimurRS Pasar ReboRS Sumber Waras

Cancer Registry Activities in Cancer Registry Activities in 40 40 Hospitals Hospitals in Jakartain Jakarta

RSUPN Cipto MangunkusumoRSUPN Cipto MangunkusumoRS Fatmawati (South Regional )RS Fatmawati (South Regional )

RS Sumber WarasRS Sumber Waras RS MMCRS MMC

RS POLRI Pusat RSAB Harapan Kita (Childhood Cancer Reg)

RSPAD Gatot Subroto( Central Regional )

Cancer Registry Activities in Cancer Registry Activities in 40 40 Hospitals Hospitals in Jakartain Jakarta

RS Pasar Rebo

28 Hospitals in Jakarta

14 Private HospitalsBoard Committee 77%Pathologist 77%Surg Onc 77%Medical Onc 77%Registrar 55,56%Staf MR 77%Staf morbid 66,67%Ahli Epid 33,3%Ahli statistik 44%Entry data/IT 66,67%

14 Govern Hospitals85,71%78%50%35%42%100%85%14%28%78%

28 Hospitals in Jakarta

14 Private HospitalsOffice/Room 11%Hardware 44,%Software 0Internet system 1%Cabinet 33%Hosp Policy 33%Dana 11%

14 Govern Hospitals57%64%42%57%57%35%7%

Network System in National Cancer Registry : 40 Hospitals in Jakarta as a Model

HCR : Hosp. Cancer Reg. NCR : National Cancer Reg.

DRC : Disaster Recovery Center RCR : Regional Cancer Reg.

Dharmais NCC

RSPAD -GS

RS Fatmawati

RS Persahabatan

RS KojaRSKD

REG

REG

REG REG

REG

Regional Cancer CentreRegional Cancer CentreRegional Cancer CentreRegional Cancer Centre

Establishment of National Cancer Registry in Indonesia

National Cancer CentreNational Cancer CentreNational Cancer CentreNational Cancer Centre

South Sulawesi

Cancer Registry System in South Sulawesi

HCR : Hosp. Cancer Reg.

DRC : Disaster Recovery Center

RCR : Regional Cancer Reg.

Wahidin Hospital

RS Pare-Pare

RS Bone

RS Palopo

RS Bulu Kumba

RS Makassar

REG

REG

REG REG

REG

Establishing National Cancer RegistryAction Plan.

Planning(2007)

Hand book /Regulation (SK-SK) SOFTWARE

Meeting and TrainingPlanning

SOS &ADV Central to Hospt, PROP,KAB/KEC

Monitoring Evaluation

(2008- 2010)Monitoring and Facilitate

Dissemination of Information

Activity(2008)

Sos & Adv Central, Hospt, DINKES PROP/KABMeeting and Training in MOH

REGIONAL.Data Verification and Validation

Job DescriptionNational Cancer Registry

“Dharmais”NCC

Central National Cancer DataData Collecting and Analysis

Verify and Validate

Regional Hospitals

Regional Cancer DataData collecting and verify

from Municipal govern and Private hospt

Municipal Hospitas

ENTRY DATASending data to Regional Hospital

DINKES PROP/Municipals

KADINKES, SUBDIN P2PL& YANKESManagement support

Resources

Facilitate Room office/HARDWARE/ SOFTWARE

EQUIPMENT Networking/Abstract,/tools etc

Funding National/Regional BudgetWHO

HR/Brain ware

Hospital Management Pathologist/Oncologist/Stastiticion/

GP/REGISTRAR

Cancer Registry Software

International Association of Cancer Registries (IACR)

International Agency for Research on Cancer (IARC)

Indonesia Cancer Registry SoftwareSistem Registrasi Kanker di Indonesia

International Classification of Diseases for Oncology v.3

Outline of Registration Procedure

Cancer notification forms

Request information clarification

Form complete and correct

Check patient index

New cancer patient

Check previous notification

New primary

Update record

Pathology & other reports

Hospital discharges

Mention of cancer

Check patient index

New cancer patient

Request notification or information from related persons

From complete & correct

REGISTER CASE New reg. number

Computer file

Death certificates

Ignore

New primary

Update record

No

No

No

No

No

No

Yes

Yes

Yes

Yes

Yes

Yes

Yes

% Histological verified, DCO

2005

2006

2007

2008

Quality of dataJakarta Cancer Registry as a Model

Quality

• Coverage• Completeness• Reliability:

cancer/non-cancer• Follow up: last date,

status• Staging

• Histology verified• Cause of death• DOB, ID• Death certificate

notification• Treatment (Hosp-

based)

0

5

10

15

20

25

30

35

40

45

Cntrl Jkt West Jkt East Jkt South Jkt Nort h Jkt TotalHospt

Area

Num

ber

Hospital

Cancer Team Work

Brainware

Hardware

Softw are

Room/off ice

Management support in Hospital based cancer registry activities in 40 Hospitals in Jakarta

Result in 12 Months

From 40 Hospital – only 31 Hospitals sent the data, only (86,53% data) can be analysis.

Total Data Analysis, 2005 (40 Hospitals)

3400

3600

3800

4000

4200

4400

4600

Verify1 Verify2 Verify3 Verify4

Activities

Num

ber

% Histology Verification, 2005

010

2030

4050

6070

80

ClinOnly

Rad Surg Lab Cyt HistMetas

MV Autop Unk

Basic Diagnosis

Perc

ent

The Ten Commonest Malignancy in Female in 31 Hospitals in Jakarta, 2005

0.00 5.00 10.00 15.00 20.00 25.00 30.00 35.00

Liver Ca

Skin Ca

Lung Ca

Nasopharynx Ca

Thyroid Ca

Colorectal Ca

Leukaemia

Ca Ovarium

Cervix Ca

Breast Ca

TOPO

Percent

The Ten Commonest Malignancy in Male in 31 Hospitals in Jakarta, 2005

2.00

2.60

2.90

4.70

6.00

6.90

10.80

11.10

11.50

12.00

0.00 2.00 4.00 6.00 8.00 10.00 12.00 14.00

Gaster Ca

Brain Ca

Skin Ca

Liver Ca

Prostate Ca

Lymphoma

Colorectal Ca

Leukemia

Lung Ca

Nasopharynx Ca

TOPO

Percent

Result in 6 Months• From 40 Hospital – only 30 Hospitals sent the

data, only from 24 Hospitals data can be analysis(87% data)

• Consult data analysis to IACR – to get Cancer Distribution in Jakarta

• Follow-up the Problems : Hardware - Software –Brainware and Funding.

• National Policy for Cancer Registry model in Jakarta

• In 2008 Establish NCCPs based on data 40 hospts as a Pilot Project.

Total Data Analysis, 2006 (40 Hospitals)

4000

4100

4200

4300

4400

4500

4600

4700

4800

4900

5000

Total Cases Enrty Data Verified Analysis

Data

Num

ber

The Ten Commonest Malignancy in Female in 24 Hospitals, 2006

2.14

2.14

2.26

2.6

3.02

3.39

5.11

5.99

16.13

34.48

0 5 10 15 20 25 30 35 40

Colorectal

Skin

Lung

Nasopharynx

Lymphoma

Thyroid

Ovarium

Leukemia

Cervix

Breast

Topo

Percent

The Ten Commonest Malignancy in Male in 24 Hospitals, 2006

2.8

3.12

3.28

3.28

5.28

5.36

5.92

11.67

12

13.91

0 2 4 6 8 10 12 14 16

Skin

Brain

Mediastinum

Prostate

Colorectal

Tongue

Lymphoma

Lung

Nasopharynx

Leukemia

Topo

Percent

Challenges and Obstacles

Commitment of the Department of Health• Policy Jakarta Cancer Registry as a Model • Issue on confidentiality (private physicians)/Private Hospital

• Lack of Budgeting/No special Budget from Government

Lack of Human Resources.• Training of newer registry assistants• Keeping the well-trained staff

Increasing awareness of the general public and concerned parties

• Professional Organization (POI, IAPI, PERABOI, PORI, PDSRI, HOGI, MABI) Management Hospital and Private Sector. Network system : Computerization

The Planning of NCCPs of Indonesia

2006

NCD

CD

Under DevelopedDeveloping

Intervention

2009 2010 2015 2019

Fundamental development Strengthening

Sustainability

1. Legal aspect2. Socialization and advocatie3. Programme development4. Humant invesment5. Networking6. Surveillance7. Logistic8. Monitoring and evaluation9. Budget development

2014

National Cancer Control Programmes

MORBIDITY MORTALITY

Ca Patients

Environment

Diet & food

Hormonal

Physical Activity

Behavior

Conductor Cancer

Program

Policy of NCCPs

Impact :Risk Factor

Occupation

Genetic/Screening

Tobacco Control

Colaborate with• Professional Organization• Indonesia Cancer Foundation• Board committee of NCCPs• University Society network • Others Foundation

Vaccination

WHO WHO 19821982, “Do not put years but life into years “, “Do not put years but life into years “THANK YOUTHANK YOU