Institute of Biostatistics and Analyses, Masaryk University, Brno, Czech Republic

Transcription

1 Hospital-based data in regional and local strategies optimizing CRC control and management: real-world outcomes of the Czech National Cancer Control Programme Mužík J., Dušek L., Blaha M., Klika P. Institute of Biostatistics and Analyses, Masaryk University, Brno, Czech Republic THIS PROJECT IS SUPPORTED BY THE EUROPEAN SOCIAL FUND AND THE STATE BUDGET OF THE CZECH REPUBLIC.

2 1) Available data THIS PROJECT IS SUPPORTED BY THE EUROPEAN SOCIAL FUND AND THE STATE BUDGET OF THE CZECH REPUBLIC.

3 Available data sources for cancer care control Population-base data: National Cancer Registry Specific clinical databases Specific clinical data: Data from cancer screening programmes Local hospital-based clinical registries Clinical registries focused on specific treatment... Basic healthcare data: Hospital information systems Specific hospital laboratory data Standardized hospital administrative data for healthcare payers... Current situation in Czech Republic: only two national-wide data sources with fully Current situation in Czech Republic: only two national-wide data sources with fully standardized structure.

4 Czech National Cancer Registry Available population-based data since 1977 CNCR Czech National Cancer Registry Main CNCR /1977 : > 1.7 million records/ added value: + Demographic data clinical stage + Death Records Database TNM classification CNCR is a fully representative population-based registry with validated records on diagnostics, primary therapy and survival of all cancer patients in the Czech Republic.

5 Czech National Cancer Registry: Incidence of colorectal cancer in Czech regions in the period between and Cases per 100,000 population Region: Plzen Karlovy Vary Moravian-Silesian South Bohemian Czech Republic Olomouc Vysocina Prague Hradec Kralove Zlin South Moravian Liberec Usti nad Labem Central Bohemian 72.1 Pardubice Cases per 100,000 population < 73.0 Source: Czech National Cancer Registry

6 Czech National Cancer Registry: Prevalence of colorectal cancer in Czech regions as on 31 December Cancer survivors per 100,000 population Region: Plzen Vysocina South Bohemia Olomouc Moravia-Silesia Zlin Karlovy Vary South Moravia Czech Republic Pardubice Hradec Kralove Prague Liberec Usti nad Labem Central Bohemia Cancer survivors per 100,000 population < Source: Czech National Cancer Registry

7 Czech National Cancer Registry: Incidence trends for colorectal cancer in Czech regions 120 min 120 min 120 min 120 min 110 ČR 110 ČR 110 ČR 110 ČR 100 max 100 max 100 max 100 PHA STC JHC max PLK min KVK 120 min 120 min ČR max ČR max ULK ČR max LBK LBK 120 min ČR max HKK ČR: Czech Republic max: maximum in regions min: minimum in regions Casess per 100,000 population min ČR max PAK 120 min 120 min ČR max VYS ČR max JHM PHA: Prague STC: Central Bohemian JHC: South Bohemian PLK: Plzen KVK: Karlovy Vary ULK: Usti nad dl Labem min ČR max OLK 120 min ČR max ZLK 120 min ČR max MSK LBK: Liberec HKK: Hradec Kralove PAK: Pardubice VYS: Vysocina JHM: South Moravian OLK: Olomouc ZLK: Zlin MSK: Moravian-Silesian Source: Czech National Cancer Registry

8 Czech National Cancer Registry: Quality and completeness of diagnostic data All malignant tumours except non-melanoma skin cancers (C00-C97 without C44) n = (100 %) n = 72 8 (5.6 %) n = 79 9 (6.1 %) n = (6.0 %) Diagnosis based on autopsy / DCO Early deaths, treatment not started Incomplete records n = (21.5 %) Period Malignant neoplasms not included in the analysis (diagnoses without TNM classification*, rare cancers, malignances of immune system and haematopoietic tissues * including diagnoses without valid TNM classification at the time of diagnostics Records with full diagnostic set n = (.9 %) ANTICANCER TREATMENT n = (48.7 %) 17.9% WITHOUT ANTICANCER TREATMENT n = (12.2 %) 10.6% 20.9% 33.7% 57.6% 12.4% 19.3% Stage 1 Stage 2 Stage 3 Stage % Source: Czech National Cancer Registry

9 Colorectal cancer: stage at diagnosis in Czech regions in the period between and Region: 0% 10% 20% % % % % % % % 100% Karlovy Vary N = Plzen N = Usti nad Labem N = Zlin N = Liberec N = 1 3 Olomouc N = South Bohemian N = Czech Republic N = Moravian-Silesian N = Central Bohemian N = Vysocina N = Hradec Kralove N = Pardubice N = South Moravian N = Prague N = Stage at diagnosis: unknown - objective reasons unknown incomplete records Source: Czech National Cancer Registry

10 Czech National Cancer Registry: Mapping of primary cancer treatment Region: Colorectal cancer with primary therapy, period - R10 R08 R06 R13 R12 R01 R09 ČR R07 R03 R11 R02 R04 R14 R05 0% 20% % % % 100% all treatment in CCC surgery in CCC, other treatment (partly) in other hospital surgery in CCC without record of other treatment surgery in non-ccc hospital, other treatment (partly) in CCC all treatment in non-ccc hospital Source: Czech National Cancer Registry

11 Czech National Cancer Registry: Follow-up records Example: all malignant neoplasms related to one hospital Follow-up year 1 All patients (N = 9 162) 0% 20% % % % 100% Follow-up year 1 Alive patients in follow-up N 0% 20% % % % 100% not in follow-up alive with alive, not alive, unknown treatment treated treatment statuss missing follow- up in given year missing followresponsible hospital not mentioned missing followup, status of the patient unknown deceased patients Source: Czech National Cancer Registry

12 SUMMARY: Czech National Cancer Registry as a data source + ADVANTAGES standardized population-based epidemiological source long-term data information about residence of patients complete diagnostic information (validated diagnosis, TNM, stage, morphology...) information on primary therapy (type of treatment, hospitals) survival status of the patient (incl. death cause record) - PROBLEMS information only on primary care and only in basic form (yes/no) incomplete follow-up data, no information on subsequent cancer care no information on co-morbidities delay in accessibility of complete and validated data (about 3 years)

13 Standardized hospital administrative data for healthcare payers Intended to report healthcare events to healthcare payers for reimbursement diagnostic events treatment events administered medication hospitalization - other events related to healthcare information on diagnosis time-related information information on costs

14 Standardized hospital administrative data for healthcare payers + ADVANTAGES standardized di d data structure t in all healthcare facilities data in the same structure are reported to all healthcare payers information on diagnosis information on costs all these data reported to the Czech National Reference Centre - PROBLEMS without any specific information about disease limited information about patient (age, sex) diagnoses reported in healthcare events are not validated reported diagnoses are not always related to the main disease time limited data source, long-term data are not available

15 Standardized hospital administrative data for healthcare payers: examples Healthcare events reported with the diagnosis of interest (C18-C20) Hospitalizace C18/C RESEKCE A ANASTOMÓZA TLUSTÉHO STŘEVA NEBO REKTOSIGMATU BŘIŠNÍM PŘÍSTUPEM, KOLOMYOTOMIE Hospitalizace Z51/C RADIOTERAPIE LINEÁRNÍM URYCHLOVAČEM S POUŽITÍM FIXAČNÍCH POMŮCEK, BLOKŮ, KOMPENSÁTORŮ APOD. (1 POLE) Hospitalizace C19/C `5-FLUOROURACIL EBEWE (Fluorouracil L01BC02) Ambulantní ošetření C HVLZ AVASTIN (Bevacizumab L01XC07) Healthcare events in patients with the diagnosis of interest (C18-C20), but events reported to other diagnosis - continuing care, diagnostic events Ambulantní ošetření N PROHLÍDKA OSOBY DISPENZARIZOVANÉ Ambulantní ošetření C KONTROLNÍ VYŠETŘENÍ ONKOLOGEM Ambulantní ošetření K TUMORMARKERY CA 19-9, CA 15-3, CA 72-4, CA 125 Hospitalizace C/C KOLOSKOPIE NEÚPLNÁ (NEBO SIGMOIDEOSKOPIE) Ambulantní ošetření D (VZP) HYBRIDNÍ VÝPOČETNÍ A POZITRONOVÁ EMISNÍ TOMOGRAFIE (PET/CT)

16 2) Combined data sources THIS PROJECT IS SUPPORTED BY THE EUROPEAN SOCIAL FUND AND THE STATE BUDGET OF THE CZECH REPUBLIC.

17 Basic idea: merging of data sources Czech National Cancer Registry (CNCR) Tumour diagnosis TNM classification and stage Primary tumourtreatment? Administrative hospital records Patients treatment Hospital processes and procedures Approximate costs! New data source with new enhanced information power

18 Merging data from the Czech National Cancer Registry and from administrative hospital records + ADVANTAGES complete information on diagnosis complete information on patient complete information on healthcare - PROBLEMS missing specific clinical and laboratory data legislative limitation to merging g data sources on national level using personal identification Current legislative l situation ti in the Czech Republic enables to merge data sources only at the level of individual hospitals.

19 Example: Merged data from 3 hospitals (CCCs) aggregated data, period C: Cancer patients without treatment records only NCR data Patients associated with hospital in NCR data without treatment records in hospital 2,791 patients (1.2%), 2,979 cancer records 237,3 patients in total (100 %) B: Other hospital patients associated with cancer treatment only hospital data Patients without NCR record A: Cancer patients treated in hospital in period A1: Patients of A2: Migrating patients the hospital NCR + hospital data NCR + hospital data NCR + hospital data Cancer patients not yet reported in NCR AX B1 B2 Cancer diagnosis and anticancer treatment Diagnostic investigation confirming tumour Screening examination 7,736 patients (3.3 %) 161 patients (0.1 %) 45,331 patients (19.11 %) Patients associated with Patients with anticancer Patients with other Other treatment or,007 hospital in NCR and with treatment in hospital, treatment in hospital, treatment records in hospital not-associated with B3 diagnostics in suspected patients not-associated with hospital in NCR data hospital in NCR data cancers (12.6 %) 59,182 patients (24.9%), 7,9 patients (3.2%), 38,117 patients (16.0%), 8920 Other non-malignant 46,569 72,419 cancer records 8,920 cancer records 46,258 cancer records B4 patients diagnoses, other treatment (19.6 %) 104,8 patients (44.1%), 127,597 cancer records 129,4 patients (54.7 %)

20 1. Colorectal cancer (C18-C20): available data Overview of available number of patients and tumors in administrative hospital data (period 1/ 12/2010) and in National Cancer Registry (NCR; validated data till ). Available records of patients treated in hospital in period 1/ - 12/2010 Numb ber of patients <= Analyzed period 1/ - 12/2010 Year of first diagnosis or first visit in hospital 2010 % 9% N = patients (3 531 tumors) 51% Patients with NCR record diagnosed before N = patients (1 413 tumors) Patients with NCR record diagnosed in period N = patients (1 792 tumors) Patients not yet registered in NCR N = 3 patients (326 tumors) Epidemiological situation according to NCR (C18 - C20) Patients treated in hospital in period CR in total Prague + Central Bohemian number number % CR Incidence % Incidence % Incidence % Prevalence % New patients % Hospital administrative records Patients in total N = Patients with anti-tumor therapy N = 1 1 Patients with continuing care N = Merged hospital and NCR data Patients with NCR record Patients not yet registered in NCR N = (3 205 tumors) N = 3 (326 tumors) THIS PROJECT IS SUPPORTED BY THE EUROPEAN SOCIAL FUND AND THE STATE BUDGET OF THE CZECH REPUBLIC CZ.1.07/2.4.00/

21 2. Colorectal cancer (C18-C20): healthcare burden Incidence and prevalence of patients with colorectal cancer with anti-tumor or continuing treatment in hospital in period 1/ 12/2010. Anti-tumor therapy is evaluated as separated type of treatment. Year Prevalence of patients Antitumor therapy contin uing care Total treatme nt Annual average I.06 IV.06 VII.06 X.06 I.07 IV.07 VII.07 X.07 I.08 I.06 IV.08 IV.06 VII.08 VII.06 X.08 X.06 I.09 I.07 IV.09 IV.07 VII.09 VII.07 X.09 X.07 I.10 I.06 I.08 IV.10 IV.06 IV.08 VII.10 VII.06 VII.08 X.10 X.06 X.08 I.07 I.09 IV.07 IV.09 VII.07 VII.09 X.07 X.09 I.08 I.10 IV.08 IV.10 VII.08 VII.10 X.08 X.10 I.09 IV.09 VII.09 X.09 I.10 IV.10 VII.10 X.10 Patients with C18 C20 treated in hospital in period 1/ - 12/2010 r of patients Number Number of patients tients Number of pat Incidence - first hospital record of the patient with given type of treatment Month of first record in hospital* Cumulative incidence - total number of patients with given type of treatment Month Prevalence - number of patients treated in hospital at a given time Month of treatment in hospital THIS PROJECT IS SUPPORTED BY THE EUROPEAN SOCIAL FUND AND THE STATE BUDGET OF THE CZECH REPUBLIC CZ.1.07/2.4.00/ any treatment monthly average = 41 continuing care monthly average = 41 anti-tumor therapy monthly average = 28 * period I/06-VI/06 not shown, results are influenced by high number of patients with long-time continuing care before I/ any treatment total = continuing care total = anti-tumor therapy total = 1 1 any treatment monthly average = 561 continuing care monthly average = 437 anti-tumor therapy monthly average = 154

22 3. Colorectal cancer (C18-C20): migration of patients Treatmentrelated migration Own patients of the hospital A0: resident patients, all primary therapy in hospital A1: patients migrating during primary therapy, part of therapy in hospital A2-AT: anti-tumor therapy in hospital, primary therapy elsewhere Migrating patients A2-CC: only continuing care in hospital, primary therapy elsewhere Geographic migration N = N = 528 N = 4 N = Patients treated in hospital in period 1/-12/ (100.0 %) A0: resident patients t (32.6 %) 528 (15.4 %) (43.2 %) 3 (8.8 %) A1: patients migrating during primary A2: patients migrating after primary therapy - AT: anti-tumor therapy 4 (8.8 %) - CC: only continuing care (34.4 %) AX: patients not yet registered in NCR Identification of migrating pts N = (100 %) A0 A1 A2-AT A2-CC PHA STC other Total (43,2 %) (22,5 %) (25,55 %) (91,2 %) 837 (24,3 %) 181 (5,3 %) 89 (2,6 %) 378 (11,0 %) 220 (6,4 %) 113 (3,3 %) 118 (3,4 %) 321 (9,3 %) 62 (1,8 %) 234 (6,8 %) 97 (2,8 %) 485 (14,1 %) AX unknown migration: 3 (8,8 %) (32,6 %) 528 (15,4 %) 4 (8,8 %) (34,4 %) Region of residence: Praha Praha 5 Praha 6 Praha 4 Praha 10 Praha 9 Praha 8 other Praha Středočeský Ústecký Jihočeský Karlovarský Liberecký Plzeňský Moravskoslezský Královéhradecký Vysočina Jihomoravský Zlínský Pardubický Olomoucký Praha (PHA) Středočeský (STC) other regions % patients % patients % patients % patients % 20%.5 74% % % % 32% 32% 41% 21% 39% 27% THIS PROJECT IS SUPPORTED BY THE EUROPEAN SOCIAL FUND AND THE STATE BUDGET OF THE CZECH REPUBLIC CZ.1.07/2.4.00/

23 4. Colorectal cancer (C18-C20): patients characteristics Own patients of the hospital Migrating patients Basic typology of the patients with colorectal cancer (CRC) treated in hospital in period 1/ 12/2010. Stage of disease is from NCR records. All patients N = Sex males females Age at treatment in hospital % patients % 55% males females total N mean median qartiles <= age Stage at diagnosis Stage (21,4 %) Stage (27,1 %) Stage (20,7 %) Stage (15,5 %) Stage unknown: - objective reasons 108 (3,1 %) - incomplete records 116 (3,4 %) - without NCR record 3 (8,8 %) Sex Age at treatment in hospital Stage at diagnosis In patients with multiple CRC is considered the worst stage. A0: resident patients, all primary therapy in hospital A1: patients migrating during primary therapy, part of therapy in hospital A2-AT: anti-tumor therapy in hospital, primary therapy elsewhere A2-CC: only continuing care in hospital, primary therapy elsewhere N = N = 528 N = 4 N = % males females N mean median qartiles % patients % males females total <= age % 61% males females total <= % 4% 0% 4% 21% 17% 25% 18% 24% % 23% 31% age % 62% males females total <= % age % 53% males females total <= % 5% 4%3% 22% 14% 26% 25% 20% stage 1 stage 2 stage 3 stage 4 stage unknown - objective reasons 21% 32% age stage unknown - incomplete records THIS PROJECT IS SUPPORTED BY THE EUROPEAN SOCIAL FUND AND THE STATE BUDGET OF THE CZECH REPUBLIC CZ.1.07/2.4.00/

24 5. Colorectal cancer (C18-C20): comparison with epidemiology in - Comparison of patients treated in hospital wit population-based data from National Cancer Registry (NCR) was made in period - (most recent available data). Sex of the patients 0 Hospital N = females 42% males Age at diagnosis in period - Proportion of cancer diagnoses in adults diagnosed in period - ZZ NOR ČR males females total males females total N mean median qartiles % patients Males hospital all NCR <= age % patients hospital <= Females all NCR Stage of disease at diagnosis in period - age Malignant tumors without other skin Hospital NCR in total trachea, bronchus and lung (C33,C34) (11.0 %) 25 4 (12.0 %) thyroid (C73) (10.7 %) (1.6 %) female breast (C) (9.4 %) (11.6 %) colorectal cancers (C18-C20) (9.0 %) (14.8 %) non-hodgkin s Lymphoma (C82-C85) (7.8 %) (2.3 %) prostate (C61) 1 1 (6.5 %) (10.1 %) oral cavity and pharynx (C00-C14) C14) 712 (3.9 %) (2.5 %) kidney (C64) 639 (3.5 %) (5.2 %) oesophagus (C15) 610 (3.3 %) (1.0 %) stomach (C16) 9 (3.3 %) (3.1 %) uterus (C54-C55) 514 (2.8 %) (3.5 %) cervix uteri (C53) 497 (2.7 %) (1.9 %) leukaemia (C91-C95) 489 (2.7 %) (2.2 %) pancreas (C25) 478 (2.6 %) (3.6 %) bladder (C67) 451 (2.5 %) (4.7 %) ovary (C56) 336 (1.8 %) (2.1 %) melanoma of skin (C43) 315 (1.7 %) (3.6 %) larynx (C32) 299 (1.6 %) (1.0 %) brain, nervous system (C-C72) 292 (1.6 %) (1.5 %) Hodgkin lymphoma (C81) 281 (1.5 %) 991 (0.5 %) gallbladder etc. (C23,C24) 210 (1.1 %) (1.8 %) multiple myeloma (C) 179 (1.0 %) (0.9 %) connective and soft tissue (C47,C49) C49) 136 (0.7 %) (0.5 %) liver (C22) 134 (0.7 %) 3 4 (1.6 %) testis (C62) 116 (0.6 %) (0.9 %) other malignant (5,8 %) (5,8 %) C18-C20 - proportion of the hospital in all NCR data: 5.2 % own patients t of the hospital migrating patients t NCR - PHA+STC NOR - CR in totalt (N = 937) (N = 2) (N = 7 083) (N = ) 58% % patients NCR in total N = % 59% Stage 1 Stage 2 Stage 3 Stage 4 Stage unknown - objective reasons Stage unknown - incomplete records THIS PROJECT IS SUPPORTED BY THE EUROPEAN SOCIAL FUND AND THE STATE BUDGET OF THE CZECH REPUBLIC CZ.1.07/2.4.00/

25 6. Colorectal cancer (C18-C20): available data about treatment in hospital Typology of patients according to availability of treatment data in time 1 dg dg dg dg Analyzed period 1/ - 12/ dg dg 5 dg I. II. III patients (100 %) in total 9% In administrative data of the hospital can be identified antitumor treatment and other treatment records of the patients. Subsequent analysis related to the time identifies phases of treatment. N = (39.3 %) N = (38.1 %) N = 473 (13.8 %) N = 3 (8.8 %) I. II. III. patients diagnosed before patients diagnosed in period patients with multiple tumors - requires specific analysis of records patients not yet registered in NCR, analysis is not possible 14% 38% 39% Treatment of the patients in hospital in period 1/ - 12/2010 N = patients Only anti-tumor therapy Anti-tumor therapy + continuing care % patients N = 165 N = Only continuing care.5 N = patients (46,3 %) with cancer examination 144 patients (4,2 %) with other examination Number and proportion of treatment t t episodes of CRC patients t treated in hospital in period 1/ - 12/2010 Type of treatment episode In own patients of the hospital In migrating patients In total Complete primary therapy 469 (13.5 %) (13.5 %) Partial primary therapy * 3 (8.7 %) - 3 (8.7 %) Subsequent cancer therapy 444 (12.7 %) 188 (5.4 %) 632 (18.1 %) Terminal cancer therapy 196 (5.6 %) 56 (1.6 %) 252 (7.2 %) Without anti-tumor therapy - only continuing care 5 (16.7 %) (35.8 %) (52.5 %) Episodes in total (57.2 %) (42.8 %) (100.0 %) * primary therapy in patients with part of this treatment outside the hospital (according to NCR) THIS PROJECT IS SUPPORTED BY THE EUROPEAN SOCIAL FUND AND THE STATE BUDGET OF THE CZECH REPUBLIC CZ.1.07/2.4.00/

26 7. Colorectal cancer (C18-C20): multiple tumours according to CNCR Analysis identifies patients treated in hospital with multiple tumors where one of these tumor is colorectal cancer (C18-C20). Analyzed are patients treated in period 1/ 12/2010. Other tumors in patients treated in hospital with C18-C20 C20 in time (only patients with NCR record) Num mber of patients Number of patients 4 Analyzed period 0 1/ - 12/ After C18-C20C20 <=19 C18-C20 patient with NCR record in total (100.0 %) C18-C20 patient with other malignant tumor 6 (20.1 %) C18-C20 patient withc44 or non- malignant tumor 149 (4.8 %) Patients only with C18-C (75.1 %) Year of C18-C20 diagnosis 2010 roportion (%) Pr Proportion of patients <=19 Year of C18-C20 diagnosis 2010 Other tumors* in patients with C18-C20C20 Other tumors* % patients Other tumor* in relation to C18-C20 Patients Tumors* prostate (C61) female breast (C) without other tumor* 2 5 (79.9 %) - colorectal cancers (C18-C21) thyroid (C73) with other tumor* 6 (20.1 %) 724 uterus (C54-C55) C55) trachea, bronchus and lung (C33,C34) - before C18-C (8.8 %) 293 kidney (C64) - together with C18-C (3.6 %) 120 bladder (C67) ovary (C56) - after C18-C (8.9 %) 311 non-hodgkin s Lymphoma (C82-C85,C96) stomach (C16) leukaemia (C91-C95) oral cavity and pharynx (C00-C14) Before C18-C20 C (0.6 %) 253 (7.9 %) (8.0 %) 2 (0.1 %) 10 (0.3 %) 95 (3.0 %) 5 (0.2 %) Together with C18-C20C20 larynx (C32) melanoma of skin (C43) oesophagus (C15) pancreas (C25) cervix uteri (C53) gallbladder etc. (C23,C24) brain, nervous system (C-C72) connective and soft tissue (C47,C49) Hodgkin lymphoma (C81) liver (C22) testis (C62) multiple myeloma (C) other malignant C18-C20 patients with tumors before C18-C20 (N = 277) with tumors together with C18-C20 (N = 112) with tumor after C18-C20 (N = 278) * as a tumor are in this analysis considered malignant neoplasms except other skin (C00-C97 except C44). THIS PROJECT IS SUPPORTED BY THE EUROPEAN SOCIAL FUND AND THE STATE BUDGET OF THE CZECH REPUBLIC CZ.1.07/2.4.00/

27 Other possible outputs from merged data detailed information about treatment (incl. costs) with respect to the disease and its stage detailed evaluation of recurrence of the disease detailed d and stratified tifi evaluation of survival of the patients on hospital level benchmarking of patients with given diagnosis automation of data processing and reporting of the results - CURRENT LIMITS incomplete information about treatment in migrating patients

28 Thank you for your attention! THIS PROJECT IS SUPPORTED BY THE EUROPEAN SOCIAL FUND AND THE STATE BUDGET OF THE CZECH REPUBLIC.