Field Epidemilgy Training Prgram Cancer Curriculum: Principles f Cancer Registries Case Study: Hspital-Based Cancer Registries FACILITATOR GUIDE
FETP Cancer Curriculum: Principles f Cancer Registries Case Study: Hspital-Based Cancer Registry Overview Participants will apply what they learned in the Hspital-Based Cancer Registry (HBCR) min-mdule and Mdule 3: Principles f Cancer Registratin t the data frm a multi-institutin HBCR in India. Participants will wrk in small grups as instructed by the Facilitatr. Objectives At the end f this exercise, participants shuld be able t wrk thrugh a sample scenari frm India t evaluate the data quality f a HBCR, describe the ccurrence f cancer in the respective area, t assess the quality f care, and t interpret infrmatin generated by HBCR Backgrund The Natinal Cancer Registry Prgramme (NCRP) has been in existence since 1982 and a permanent institute (Natinal Centre fr Disease Infrmatics and Research (NCDIR)) f the Indian Cuncil f Medical Research in 2011. The NCDIR centre is a repsitry f data frm the cllabrating cancer registries lcated in medical clleges/institutins and hspitals thrughut India. As f March 2016, there were 29 HBCRs (including all Reginal Cancer Centres). Registries use the web-based Hspital Based Cancer Registry Database Management sftware t capture relevant infrmatin (cancer patient s identificatin, diagnstic and treatment infrmatin registered in the hspital). The sftware facilitates the data cllectin and transitin t the NCRP, as well as generate quality check reprts generated by the centres r the NCRP. Updates and crrectins f the data can be perfrmed nline. HBCRs prvide individual cre data. Quality Cntrl checks, tabulatins and statistical analysis are dne at the NCDIR- NCRP, Bengaluru. Data quality The registry data underges several quality checks, bth, at the time f data entry and subsequently. Quality checks include: range, cnsistency, unlikely and family checks as per the IARC nrms (cncepts cvered in Mdule 3). All data checks are built int the Hspital Based Cancer Registry Database Management applicatin. The list f cases with pssible errrs is sent back t the respective registries fr verificatin with the riginal medical recrds and the crrectins received are updated in the registry database. (Surce: NATIONAL CENTRE FOR DISEASE INFORMATICS AND RESEARCH. NATIONAL CANCER REGISTRY PROGRAMME. Indian Cuncil f Medical Research. Cnslidated Reprt f Hspital Based Cancer Registries 2012-2014) Facilitatr Guide 1
FETP Cancer Curriculum: Principles f Cancer Registries Case Study: Hspital-Based Cancer Registry Surce: http://www.hbcrindia.rg/ Facilitatr Guide 2
Part I: Checking the quality f the data FETP Cancer Curriculum: Principles f Cancer Registries Case Study: Hspital-Based Cancer Registry The first step is t evaluate the quality f the data. Q1: Use tables 11.1, 11.3, 4.1, and 11.4 t describe the quality f the NCRP data and explain what yu bserve. TMH, Tata Memrial Hspital, Mumbai; KMIO, Kidwai Memrial Institute f Onclgy, Bangalre; CI (WIA), Cancer Institute (WIA), Chennai; RCC - TVM, Reginal Cancer Centre, Thiruvananthapuram; AMC, Assam Medical Cllege & Hspital, Dibrugarh; BBCI, Dr. B. Brah Cancer Institute, Guwahati; PGIMER, Pst Graduate Institute f Medical Educatin & Research, Chandigarh; BRAIRCH, Dr. B.R. Ambedkar Institute Rtary Cancer Hspital, AIIMS, New Delhi Table 11.1 (% f cases f unknwn age): Mst f the HBCRs d nt have any cases with age unknwn. One registry appears t pssibly have relatively mre cases with missing age (RCC- TVM). Facilitatr Guide 3
FETP Cancer Curriculum: Principles f Cancer Registries Case Study: Hspital-Based Cancer Registry TMH, Tata Memrial Hspital, Mumbai; KMIO, Kidwai Memrial Institute f Onclgy, Bangalre; CI (WIA), Cancer Institute (WIA), Chennai; RCC - TVM, Reginal Cancer Centre, Thiruvananthapuram; AMC, Assam Medical Cllege & Hspital, Dibrugarh; BBCI, Dr. B. Brah Cancer Institute, Guwahati; PGIMER, Pst Graduate Institute f Medical Educatin & Research, Chandigarh; BRAIRCH, Dr. B.R. Ambedkar Institute Rtary Cancer Hspital, AIIMS, New Delhi TMH, Tata Memrial Hspital, Mumbai; KMIO, Kidwai Memrial Institute f Onclgy, Bangalre; CI (WIA), Cancer Institute (WIA), Chennai; RCC - TVM, Reginal Cancer Centre, Thiruvananthapuram; AMC, Assam Medical Cllege & Hspital, Dibrugarh; BBCI, Dr. B. Facilitatr Guide 4
FETP Cancer Curriculum: Principles f Cancer Registries Case Study: Hspital-Based Cancer Registry Brah Cancer Institute, Guwahati; PGIMER, Pst Graduate Institute f Medical Educatin & Research, Chandigarh; BRAIRCH, Dr. B.R. Ambedkar Institute Rtary Cancer Hspital, AIIMS, New Delhi Table 11.3 (MV%) and table 4.1 (number and relative prprtin f cancers based n different methds f diagnsis): The prprtin f MV cases is high ranging frm 83.8 t 98.5% in bth sexes (Table 11.3). Accrding t the distributin f cancer cases by methd f diagnsis and sex (table 4.1), the use f imaging techniques is the secnd mst frequently used methd f diagnsis, after MV. Clinical diagnsis ccurred in 0-5.6% f the cases while the use f ther methds was rare. The higher the prprtin f MV cases the mre accurate is the cnfirmatin (as micrscpic verificatin is the mst valid basis f diagnsis f cancer). Hwever, a very high prprtin f MV cases (nearly 100% in PGMER & BRAIRCH) suggests ver-reliance in pathlgy reprts and cases diagnsis by ther means (imaging techniques, clinical diagnses) may be missed by the registry. TMH, Tata Memrial Hspital, Mumbai; KMIO, Kidwai Memrial Institute f Onclgy, Bangalre; CI (WIA), Cancer Institute (WIA), Chennai; RCC - TVM, Reginal Cancer Centre, Thiruvananthapuram; AMC, Assam Medical Cllege & Hspital, Dibrugarh; BBCI, Dr. B. Brah Cancer Institute, Guwahati; PGIMER, Pst Graduate Institute f Medical Educatin & Research, Chandigarh; BRAIRCH, Dr. B.R. Ambedkar Institute Rtary Cancer Hspital, AIIMS, New Delhi Table 11.4 (Other and Unspecified Site, O&U): The prprtin f cancers register as O&U was less than 5% in all HBCRs except TMH and BBCI, suggesting a gd diagnstics precisin. The data als suggest that re-training f registry abstractrs in the HBCRs f TMH and BBCI may be needed in rder t reduce the percentage cases registered under the O&U categry. Registry abstractrs need t diligently track these cases t the cncerned physician/ pathlgist and find the infrmatin n the exact primary site f tumr. Such errrs culd create delays and therefre affect timeliness f the infrmatin. Furthermre, the cllabratin f physicians, pathlgists, nclgists, and ther cncerned authrities t maintain gd quality recrds, and als prvide clear infrmatin abut fllw-up pst-treatment is needed t register all the cases and t fulfill the gals f the registry. Facilitatr Guide 5
FETP Cancer Curriculum: Principles f Cancer Registries Case Study: Hspital-Based Cancer Registry Q2: Based n tables 11.1 and 11.3-11.4, what can yu cnclude abut the quality f the NCRP data? The quality f the NCRP data is gd as illustrated by the lw % f cases with unknwn age, and the relatively lw % f O&U cases. Hwever, in sme registries nearly 100% f the cases were MV (PGMER & BRAIRCH) suggesting that cases diagnsis by ther means maybe missed. Learning pints: Hw t evaluate the data quality f a HBCR Interpret infrmatin generated by HBCR Part II: Describe the dimensin f cancer in the area cvered The secnd step is t use the HBCR data t describe the dimensin f cancer in the area cvered. Q3: Use Table 1.2 t list the mst frequent cancers ccurring in male and females in the respective HBCRs. Facilitatr Guide 6
FETP Cancer Curriculum: Principles f Cancer Registries Case Study: Hspital-Based Cancer Registry Table 1.2: Number (#), Relative Prprtin (%) and Rank (R) f Leading Sites f Cancer, Males * Rank nt within first ten. TMH, Tata Memrial Hspital, Mumbai; KMIO, Kidwai Memrial Institute f Onclgy, Bangalre; CI (WIA), Cancer Institute (WIA), Chennai; RCC - TVM, Reginal Cancer Centre, Thiruvananthapuram; AMC, Assam Medical Cllege & Hspital, Dibrugarh; BBCI, Dr. B. Brah Cancer Institute, Guwahati; PGIMER, Pst Graduate Institute f Medical Educatin & Research, Chandigarh; BRAIRCH, Dr. B.R. Ambedkar Institute Rtary Cancer Hspital, AIIMS, New Delhi Facilitatr Guide 7
FETP Cancer Curriculum: Principles f Cancer Registries Case Study: Hspital-Based Cancer Registry Table 1.2: Number (#), Relative Prprtin (%) and Rank (R) f Leading Sites f Cancer, Females * Rank nt within first ten TMH, Tata Memrial Hspital, Mumbai; KMIO, Kidwai Memrial Institute f Onclgy, Bangalre; CI (WIA), Cancer Institute (WIA), Chennai; RCC - TVM, Reginal Cancer Centre, Thiruvananthapuram; AMC, Assam Medical Cllege & Hspital, Dibrugarh; BBCI, Dr. B. Brah Cancer Institute, Guwahati; PGIMER, Pst Graduate Institute f Medical Educatin & Research, Chandigarh; BRAIRCH, Dr. B.R. Ambedkar Institute Rtary Cancer Hspital, AIIMS, New Delhi Facilitatr Guide 8
FETP Cancer Curriculum: Principles f Cancer Registries Case Study: Hspital-Based Cancer Registry Males: Females: In TMH, the 5 leading cancers (in ascending rder) were: muth cancer, fllwed by lung, tngue, Nn-Hdgkin s Lymphma (NHL) (5.1%) and myelid leukaemia. In KMIO, the 5 leading cancers (in ascending rder) were: esphagus, lung, hyppharynx, tngue and stmach. In CI (WIA) the 5 leading cancers (in ascending rder) were: lung (10.0%) and muth (9.7%), fllwed by stmach, tngue and esphagus. In RCC, the 5 leading cancers (in ascending rder) were: lung, muth, tngue, stmach and NHL. In AMC, the 5 leading cancers (in ascending rder) were: hyppharynx and esphagus fllwed by muth, stmach, and tngue. In BBCI, the 5 leading cancers (in ascending rder) were: esphagus, hyppharynx, lung, muth and tngue. In PGIMER, the 5 leading cancers (in ascending rder) were: lung, brain NS, esphagus, larynx and tngue. In BRAIRCH, the 5 leading cancers (in ascending rder) were: muth, lung, tngue, NHL, and brain NS. In TMH, the 5 leading cancers (in ascending rder) were: breast, cervix, vary, gallbladder and muth. In KMIO, the 5 leading cancers (in ascending rder) were: cervix, breast, muth, vary, and esphagus. In CI (WIA), the 5 leading cancers (in ascending rder) were: breast, cervix, vary, stmach, and muth. In RCC, the 5 leading cancers (in ascending rder) were: breast, thyrid, cervix, vary, and muth. In AMC, the 5 leading cancers (in ascending rder) were: breast, gallbladder, cervix, esphagus and vary. In BBCI, the 5 leading cancers (in ascending rder) were: breast, gallbladder, cervix, esphagus, and muth. In PGIMER, the 5 leading cancers (in ascending rder) were: breast, cervix, vary, gallbladder, and esphagus. In BRAIRCH, the 5 leading cancers (in ascending rder) were: breast, cervix, vary, gallbladder, and NHL. The cmmn theme seems t be high frequency f tbacc related cancer in bth sexes. This infrmatin might be useful t infrm the cancer cntrl prgram in the respective institutin, if in place. Facilitatr Guide 9
FETP Cancer Curriculum: Principles f Cancer Registries Case Study: Hspital-Based Cancer Registry PART III: HBCR data used t assess the quality f care Q4: Use Table 5.1 t describe the different aspects in the management f cancer patients in the registries f the NCRP. The NCRP defines the fllwing 4 categries: Prir Treatment Only (Prir Tmt. Only): Thse patients wh have received sme r cmplete cancer directed treatment befre registratin and have nt received any further treatment at the reprting institutin. Prir Treatment & Treatment at Reprting Institutin (Prir & Tmt. at RI): These are patients wh have received cancer directed treatment prir t registratin and have received further treatment at the Reprting Institutin (RI). Treatment Only at Reprting Institutin (Tmt. nly at RI): Patients wh have cme fr the first time t the reprting institutin with r withut a cnfirmed diagnsis f malignancy and have nt received any cancer directed treatment earlier and received cmplete cancer directed treatment at the reprting institutin. N Cancer Directed Treatment (N CDT): This grup includes patients wh have neither received nr accepted any treatment. It als includes the patients wh have nt cmpleted any frm f treatment and where the treatment status is unknwn. TMH, Tata Memrial Hspital, Mumbai; KMIO, Kidwai Memrial Institute f Onclgy, Bangalre; CI (WIA), Cancer Institute (WIA), Chennai; RCC - TVM, Reginal Cancer Centre, Thiruvananthapuram; AMC, Assam Medical Cllege & Hspital, Dibrugarh; BBCI, Dr. B. Brah Cancer Institute, Guwahati; PGIMER, Pst Graduate Institute f Medical Educatin & Research, Chandigarh; BRAIRCH, Dr. B.R. Ambedkar Institute Rtary Cancer Hspital, AIIMS, New Delhi Facilitatr Guide 10
FETP Cancer Curriculum: Principles f Cancer Registries Case Study: Hspital-Based Cancer Registry Apprximately 5-11% f the patients received sme r cmplete cancer directed treatment befre registratin and have nt received any further treatment at the reprting institutin (Prir Tmt. Only), except fr AMC with less than 1% f the patients and BRAIRCH with 15.1% f the males and 18.9% f the females receiving sme r cmplete cancer directed treatment befre registratin and have nt received any further treatment at the reprting institutin. Apprximately 3-15% f the patients f patients received cancer directed treatment prir t registratin and have received further treatment at the reprting institutin (Prir and Tmt. at RI). Mst patients came fr the first time t the reprting institutin with r withut a cnfirmed diagnsis f malignancy and have nt received any cancer directed treatment earlier and received cmplete cancer directed treatment at the reprting institutin (Tmt. nly at RI). Abut 30-50% f the patients at the reprting institutin neither received nr accepted any treatment r cmpleted any frm f treatment r the treatment status is unknwn (N CDT). AMC, PGIMER, and RCC - TVM had the highest frequency f "TmT nly at RI" categry and a lwer prprtin in the N CDT categry as cmpared t the ther institutins. Q5: Use table 7.1-7.2 t describe patient's access t quality f care TMH, Tata Memrial Hspital, Mumbai; KMIO, Kidwai Memrial Institute f Onclgy, Bangalre; CI (WIA), Cancer Institute (WIA), Chennai; RCC - TVM, Reginal Cancer Centre, Thiruvananthapuram; AMC, Assam Medical Cllege & Hspital, Dibrugarh; BBCI, Dr. B. Brah Cancer Institute, Guwahati; PGIMER, Pst Graduate Institute f Medical Educatin & Research, Chandigarh; BRAIRCH, Dr. B.R. Ambedkar Institute Rtary Cancer Hspital, AIIMS, New Delhi In all the HBCRs the rati between the number f prcedures and the number f patients treated was in the range f 1.3 and 2.0. CI (WIA) perfrmed 2-prcedures per patient treated. Facilitatr Guide 11
FETP Cancer Curriculum: Principles f Cancer Registries Case Study: Hspital-Based Cancer Registry Table 7.2: Number (#) and Relative Prprtin (%) f Patients accrding t Type f Treatment Given TMH, Tata Memrial Hspital, Mumbai; KMIO, Kidwai Memrial Institute f Onclgy, Bangalre; CI (WIA), Cancer Institute (WIA), Chennai; RCC - TVM, Reginal Cancer Centre, Thiruvananthapuram; AMC, Assam Medical Cllege & Hspital, Dibrugarh; BBCI, Dr. B. Brah Cancer Institute, Guwahati; PGIMER, Pst Graduate Institute f Medical Educatin & Research, Chandigarh; BRAIRCH, Dr. B.R. Ambedkar Institute Rtary Cancer Hspital, AIIMS, New Delhi Facilitatr Guide 12
FETP Cancer Curriculum: Principles f Cancer Registries Case Study: Hspital-Based Cancer Registry Amng patients treated: Raditherapy was the predminant frm f treatment mdality in BBCI in bth males and females. Chemtherapy was the mst frequent frm f treatment in males in BRAIRCH, RCC-TVM and CI (WIA) and in females in RCC-TVM, BRAIRCH and PGIMER. Surgery was perfrmed mre frequently in females in AMC than in any ther institutin. Mdality f treatment: Single mdality f therapy ranged between 44.0% in CI (WIA) t 67.2% in AMC in males and frm 27.1% in CI (WIA) t 66.3% in AMC in females. Males: Single therapy was mre frequent than cmbined therapy in all HBCRs, except CI (WIA) where cmbined therapy was mre frequent. Females: Cmbined therapy was mre frequent in TMH, KMIO, CI (WIA) and RCC-TVM while single therapy was mre frequent in AMC, BBCI, PGIMER and BRAIRCH. Learning pints: Hw t asses patient care, prvide an idea f the patterns f cancer in the area, help plan hspital facilities. Interpret infrmatin generated by HBCR. Facilitatr Guide 13