Active case-finding method improves completeness and accuracy of data reported to the rural Eastern Cape Cancer Registry in

Nontuthuzelo IM Somdyala1, Linda Mbuthini2, Borna Müller3, Nomfuneko Sithole1, Akhona Ncinitwa1 and Debbie Bradshaw1, 4

1South African Medical Research Council, Burden of Disease Research Unit, PO Box 19070, Tygerberg 7505, Cape Town, South Africa 2Centre for Lung Infection and Immunity, Department of Medicine, UCT Lung Institute, University of Cape Town, Observatory 7925, Cape Town, South Africa 3F. Hoffmann-La Roche Ltd, Pharmaceuticals Division, Global Access, Grenzacherstrasse 124, CH-4070 Basel, Switzerland 4Department of Family Medicine and Public Health, University of Cape Town, Observatory 7925, Cape Town, South Africa

Abstract

The quality and accuracy of the data provided by cancer registries has a significant impact on decision making. Over decades, high-income countries have been successful in moni- toring their cancer burden because of well-established data abstraction techniques such as digital systems. Conversely, in low- and middle-income countries, sparsely distributed cancer registries, using alternative less costly, but imprecise methods are struggling to capture all cancer cases. A population-based cancer registry in South Africa covering a

resource-limited rural population is faced with challenges in case finding yet the qual- Clinical Study ity and accuracy of the data provided has a significant impact on decision making. The objective of this study was to assess data quality using two data quality attributes ‘com- pleteness and accuracy’ and also to determine the benefits of using active and passive case-finding methods for cancer registration in this population. Data used were collected between January 2014 and December 2015 from four to compare the quality of both active and passive case-finding methods. From all four hospitals during the same period, a first set of data obtained through passive reporting was compared with a sec- ond set of data obtained through active case finding. Covering multiple facilities during active case finding can significantly improve quality of data, while passive case finding is challenged by data collection being confined to one specific health facility, only. Better investment in active case finding is recommended in settings with resource-distribution disparities. Correspondence to: Nontuthuzelo IM Somdyala Email: [email protected] Keywords: population-based cancer registration, completeness and accuracy, active case finding, resource-distribution disparities, better investment, Africa ecancer 2021, 15:1251 https://doi.org/10.3332/ecancer.2021.1251 Published: 17/06/2021 Received: 19/01/2021 Copyright: © the authors; licensee Introduction ecancermedicalscience. This is an Open Access article distributed under the terms of the Cancer registries play an important role in monitoring the globally increasing cancer bur- Creative Commons Attribution License (http:// creativecommons.org/licenses/by/3.0), which den. Also, they are of pivotal importance in the planning and evaluation of cancer inter- permits unrestricted use, distribution, and vention programmes [1]. Consequently, the quality and accuracy of the data provided by reproduction in any medium, provided the original cancer registries has a significant impact on decision making. The International Agency work is properly cited.

ecancer 2021, 15:1251; www.ecancer.org; DOI: https://doi.org/10.3332/ecancer.2021.1251 1 survival collaborativeCONCORD studies; 2 and3[19,20]. have beenset outby certain organisations [4]. [2–6]. However, latter,the with there are nointernationalguidelines at present, althoughspecificstandards for abstraction andreporting In cancer registration, quality of data isdescribed by four attributes: namely, comparability, accuracy/validity, completeness andtimeliness lines for cancer registries.Each registry’s dataquality ismeasuredthose rulesandits against value dependsonthequality of data generated. for Research onCancer (IARC) of the World Health Organization; theglobalcancer surveillance controlling body, sets therulesandguide- ecancer 2021, 15:1251; www.ecancer.org; DOI:https://doi.org/10.3332/ecancer.2021.1251 patient was seen by thedoctor andcancer diagnosed)and healthcare facility in which thepatient was first diagnosed with cancer. Variables primary organ invaded by thetumour (topography), histological classification of thecancer tissue(morphology), incidence date (first date the Forstudy, this information themain included used variables for patients’ identification (name, surname,address, age, sex andethnicity), the Data andanalysis the International Coding of Disease for [20]. (Frerehospitals andUmtata General Complex (UGHC)). All of types malignant cancer cases were includedandcoded according to period. the same during The fourstudyin the included hospitals were two peripheral (Tafalofefe hospitals andStElizabeth) andtwo referral obtainedthrough passive reporting. The second dataset was constituted by casescollected by cancer registry staff from thesamehospitals compare thequality of both, theactive andpassivemethods. case-finding From allfour in2014and2015,afirst hospitals, set of data was abstractionand reporting to thecancer registry bystaff, hospital alsotermed passive casefinding.Data from four hospitals were usedto ing patient reviews, chart also termed active casefinding.Four of are the 15hospitals resourced to proactively perform independent data constitute themaindata source usedby theECCR. Data from generally thesehospitals isobtained by registry staff periodically perform- This study was conducted between January 2014andDecember 2015.In total, andtheir 15hospitals associated pathology laboratories Data collection andstudy sample Materials andmethods (CI) data globally andregionally; Cancer Incidence inFive Continents (CI5); volumes X andXI[16,17],Cancer in sub-Saharan Africa [18] monthly basis. For uniformity in both methods, astandardised data collection tool is used passivethe method case-finding involves datacollectors inonly four collaborating hospitals who collect andsenddata to theECCR ona collaborating hospitalsby ECCR staff to review and extract all available information from patients’ records with a cancer diagnosis remains financially burdensome to the registry but beneficial in terms of data quality. The active methodcase-finding involves annual visits to active andpassivemethods case-finding to mitigatediscrepancies the andshortfalls of either method alone[13]. The useof both methods tries have a vested interest inpromoting theuseof their data and must ensure data generated are of good quality [12]. The ECCR uses both [9–10] a populationwith of 1.2million[11].However, merely collecting casesandestablishingacancer registry isinsufficient. Cancer regis - The Eastern CapeCancer Registry (ECCR)onlyis the rural population-based cancer registry inSouth Africa covering eight magisterial areas generation of reliable, valid andcomplete data. inaccessibility oftodue poor hospitals infrastructure andpoor record keeping for tracing andfollow-upto patients [8]. This impactsonthe faced challengeswith finding incase limitedinclude resourceswhich aslaboratories such andoncologist specialistsfor accurate diagnoses, tive lesscostly,imprecise but methods are struggling to capture allcancer cases.In Africa, particularly inrural areas, cancer registries are techniquesas digitalsystemssuch [7].Conversely, inlow-and middle-income countries, sparsely distributed cancer registries, usingalterna- Over decades, high-income countries have been successful in monitoring their cancer burden because of well-established data abstraction consistency anduniformity of registry records produced usingactive andpassive data collection methods inaresource-limited setting. and morphology) that truly hadtheattribute [4]. This study focused onthesetwo quality attributes asaninitialattempt to checkinginternal in theregistryincluded [2], whereas accuracy isdefined astheproportion of casesinthedata agivenwith characteristics (e.g. topography data quality attributes ‘completeness and accuracy’. Completeness is the extent to which all incident cancers occurring in a population are has beenconducted to evaluate ECCRdata quality. The objective of thisstudy was to assessthequality of data generated by ECCR intwo

Other thantheachievement of thesedevelopmental milestones, nointernal study [14, 15].The ECCR contributes to cancer incidence [13]. While

and 2

Clinical Study (C=N new casespassive =N respectively (Table 1aandb between active andpassivemethods case-finding and between hospitals was doneinRusingMcNemar’s andPearson’s Chi-squared tests, examination wasSubsequently, carriedout. analysis usingMicrosoft Excel 2016 was done. Testing for statistically significant differences received through both methods case-finding (Figure 1). Three reviewers independently assessedtheserecords andif results differed re- = 104) were randomly selected to assessandcalculateagreement the ininformation provided with regard to topography andmorphology identification.Only recorded 1,040cases by bothmethods (active andpassive) were includedintheanalysis (Figure 1 ). Of these,10%(N To assess accuracy of information ontopography andmorphology, data were anonymised by assigning eachpatient aregistry number as ecancer 2021, 15:1251; www.ecancer.org; DOI:https://doi.org/10.3332/ecancer.2021.1251 and 2015by either method dividedby thetotal number of patients identified through both methods combined; new casesactive =N For completeness eachhospital, of active andpassivefinding case was assessedby calculating thenumber of patients captured during2014 sis, duplicates were cleanedonce thepatient’s information hasbeenconsolidated. collectiontool usedduringboth active andpassive casefindingisattached (Appendix: Confidential 1 cancer notification form). Before analy- selected constitutemandatory the variables expected forcase to each be accepted as valid inthedatabase. The complete standardised data (ii) Dataset to assessaccuracy (i) Dataset to assesscompleteness a Tcases*100 andC=N p-values reaching statistical significance are highlighted inbold using Pearson's Chi-squared test with Yates' continuity correction p-values for pairwisecomparison of thesensitivity of active casefindingbetween hospitals(all years combined) Table 1.(b) How did the performance of active case findingdiffer between hospitals? using Pearson's Chi-squared test with Yates' continuity correction referral hospitals By year, Table 1.(a) How did the performance of active andpassive case findingdiffer between peripheral andreferral hospitals? p-values reaching statistical significance are highlighted inbold UGHC Tafalofefe St Elizabeth Frere p-values for pairwisecomparison of thesensitivity of active andpassive casefindingbetween peripheral and p

p Tcases*100). Patients captured by both methods were identical if allidentification variables were matching. ).

Both years 2015 2014 Year St Elizabeth

Active 0.25 0.37 0.54 Tafalofefe 0.92

UGHC 0.18 0.09

Passive 0.00 0.04 0.01 Frere 0.95 0.03 0.96

a and 3

Clinical Study ecancer 2021, 15:1251; www.ecancer.org; DOI:https://doi.org/10.3332/ecancer.2021.1251 (Table 4).However, agreement for morphology was less 83% in 2014and76%in2015(79%forwith both years combined; topography and morphology. The overall proportionof patient records matching for tumour topography was 89%in2014and90% in2015 An assessmentof accuracy the of informationabstracted fromthe medicalrecords by eachmethod was done with regard to data ontumour Accuracy of casesdiagnosed; these four hospitals(Figure 1, During thestudy period(2014–2015),usingactive andpassive casefindingcombined, atotal of 2,961individualcancer cases were identified at Province of South Africa. These consisted of two peripheral hospitals(Tafalofefe andSt Elizabeth) andtwo referral hospitals(Frere andUGHC). We compared cancer registry data obtained through both active andpassive case-findingmethods from four hospitalsintheEastern Cape Completeness Results proposal. However, for thisstudy, noadditionalethics approval was neededasthis was asecondary data analysis. ResearchCommittee. For anyresearch additional deviateswhich from theoriginal, principalinvestigator isexpected to review theproject area. Approval was received from theSAMRC EthicsCommittee andpermission was sought from theEastern CapeDepartment of Health ECCRis anongoing projectof theSouth AfricanMedical Research Council (SAMRC). The mainobjective isto generate CIinadefined Ethics approval the number of cancer casesidentified by 13%(Tables 2and3). passive case findingalone was very similar (88%; Frerehospitals For andUGHC. combined, thesehospitals among allcancer casesdiagnosed,theproportion of casescaptured by active or The significantly higher performance of active over passive casefindingfor theperipheral hospitals was not observed for thetwo referral finding aloneand41cases were addedby includingpassive casefinding). passivetofinding active case the method case-finding increased casedetection by 6%,only (703cases were reported through active case reported through passivefinding aloneand215cases case were addedby includingactive finding; case adding activeto casefinding passive the method case-finding increased thenumber of cancer casesidentified by 41%(529cases were respectivelyand 85%, (66% orfor 71% bothperipheral combined; hospitals p<0.05; for both peripheralcombined; hospitals For theperipheralSt hospitals Elizabeth and Tafalofefe, respectively, active case-findingidentified 94%and96%of allcasesdiagnosed(95% cases diagnosed,active case-findingidentified asignificantly higher proportion thanthat from passive casefinding(p p-values reaching statistical significance are highlighted inbold using Pearson's Chi-squared test with Yates' continuity correction p-values for pairwisecomparison of thesensitivity of passive casefindingbetween hospitals(all years combined) How did the performance of passive case findingdiffer between hospitals? Frere UGHC Tafalofefe St Elizabeth Table 2, Figure 2aand

Table 2). The number of casesjointly identified by both case-findingmethods was 2,176(74%of thetotal amount Table 2).In contrast, passive casefindingcovered significantly fewer casesamongallidentified b ). Neither of the two methods aloneidentified alldiagnosesreported. However, amongallcancer Table 2). Also, adding active case finding to the passive methodcase-finding still increased St Elizabeth

Tafalofefe 0.05

Table 2).Combined for thetwo peripheral hospitals, UGHC 0.84 0.01

Tables 2and3).In contrast, adding <0.05; Frere 0.01 0.28 0.00

Tables 1a,band3). Table 5, Figure 3). 4

Clinical Study For referral hospitals, agreement of active andpassive casefinding was 71%at UGHCand85%at Frere (79%intotal; N=85; ecancer 2021, 15:1251; www.ecancer.org; DOI:https://doi.org/10.3332/ecancer.2021.1251 Figure 1.Data evaluation process. For data ontumour morphology, at peripheralagreement hospitals, was 82%at St Elizabeth and75%at Tafalofefe (79%intotal; N=19; total; however, at a very lowsize sample (N=19records intotal). For referral agreement hospitals, was 87%atand 92%at UGHC Frere (89%in Specifically, for dataon tumour topography, atboth peripheral agreement hospitals, of active andpassive case-findingmethods was 100%; N =85; Table 4). Table 5). Table 5). 5

Clinical Study Passive: Casesregistered by applyingpassive casefindingmethods Active: Casesregistered by applyingactive casefindingmethods Se: Sensitivity of casedetection method for hospitalandperiodindicated Freq: Absolute number of casesdetected **Referral hospitals *Peripheral hospitals Table 2.Cancer casesregistered by detection method, hospitaland year ecancer 2021, 15:1251; www.ecancer.org; DOI:https://doi.org/10.3332/ecancer.2021.1251 referraland 83%inperipheral hospitals (Figure hospitals 4).However, differences were noted inindividualhospitals arangewith of 65%– The overall results of thestudy indicated less variations regardwith to completeness compared to accuracy; arangewith of 83%–96%in cantly to theunderstanding of theimportance of CIeven inrural populations of Africa resourcewith limitations. mostly biasedtowardscentres urban betterwith infrastructure andpossiblydisease epidemiology. distinct Our study contributes signifi - cancer registry inSouth Africa.Data burdenon the of cancer inSub-Saharan Africa are very scarce andthelimited information available is The main objective of this study was to assess thecompleteness and accuracy of cancer patients’ data reported to a rural population-based Discussion (all cases) Active or passive Active andpassive Passive not active Active not passive Passive Active Bothcombined years (all cases) Active or passive Active andpassive Passive not active Active not passive Passive Active 2015 (all cases) Active or passive Active andpassive Passive not active Active not passive Passive Active 2014 method Case detection Freq 531 317 182 349 499 272 159 181 250 259 158 168 249 32 22 91 10 91 St Elizabeth* 100.0% 100.0% 100.0% 59.7% 34.3% 65.7% 94.0% 58.5% 33.5% 66.5% 91.9% 61.0% 35.1% 64.9% 96.1% 6.0% 8.1% 3.9% Se Freq 213 171 180 204 115 107 33 98 85 12 86 97 86 21 94 9 1 8 Tafalofefe* 100.0% 100.0% 100.0% 80.3% 15.5% 84.5% 95.8% 86.7% 12.2% 87.8% 99.0% 74.8% 18.3% 81.7% 93.0% 4.2% 1.0% 7.0% Se 1234 1014 1018 Freq 798 216 220 842 532 151 159 683 691 392 266 331 327 65 61 UGHC** 100.0% 100.0% 100.0% 64.7% 17.5% 17.8% 82.2% 82.5% 63.2% 17.9% 18.9% 81.1% 82.1% 67.9% 16.6% 15.6% 84.4% 83.4% Se Freq 983 890 486 943 930 443 470 459 497 447 473 471 53 40 27 16 26 24 Frere** 100.0% 100.0% 100.0% 90.5% 95.9% 94.6% 91.2% 96.7% 94.4% 89.9% 95.2% 94.8% 5.4% 4.1% 5.6% 3.3% 5.2% 4.8% Se Freq 744 488 215 370 529 703 244 103 267 347 374 244 112 262 356 41 23 18 Peripheral 100.0% 100.0% 100.0% 65.6% 28.9% 71.1% 94.5% 65.9% 27.8% 72.2% 93.8% 65.2% 29.9% 70.1% 95.2% 5.5% 6.2% 4.8% Se 2217 1688 1328 1957 1948 1153 1150 Freq 269 260 975 178 175 889 713 804 798 91 85 Referral 100.0% 100.0% 100.0% 76.1% 12.1% 11.7% 88.3% 87.9% 73.4% 13.4% 13.2% 86.8% 86.6% 10.2% 80.2% 90.4% 89.8% 9.6% Se 2961 2176 1698 2486 2651 1219 1420 1497 1263 1066 1154 Freq 310 475 201 278 957 109 197 Grand Total 100.0% 100.0% 100.0% 73.5% 10.5% 16.0% 84.0% 89.5% 71.8% 11.8% 16.4% 83.6% 88.2% 75.8% 15.6% 84.4% 91.4% 8.6% Se 6

Clinical Study ecancer 2021, 15:1251; www.ecancer.org; DOI:https://doi.org/10.3332/ecancer.2021.1251 Figure 2.Sorting process for completeness check of casefindingin (a): year 2014, (b): year 2015. hospitals andlackof follow-up of referred casessothat information diagnosisiscompleted about andimproved. some concern. Information regarding high morphology disagreement reflects the absence of oncology trained specialists at both peripheral sive (Table case-finding to 2)due frequently interrupted data incorrectsubmissions, record of information regarding diagnosis which raised infrastructure which issupportive andrelevant to cancer registration. In contrast, St Elizabeth Hospital hadthelowest completeness for pas- was reported atHospital UGHC is areferralwhich and at hospital which althoughisaperipheral hasasimilar hospital reporting(Appendix: Resource 2 differences betweenobserved hospitals duringthestudy, possibly impactingquality of passive reporting) is alsofullypital equipped oncologywith andradiationand several units practicing oncologists andregistrars. Similar performance of passive highest accuracy inrecording. Thisunlike hospital theothers pathology hasanin-house laboratory linked data to patients’ records. The hos- noses. A higher record of accuracy was observed in referral compared to peripheral Frerehospitals. Hospital, which is a referral, showed the cancer morphology compared to active. Disagreement was frequently basedondifferent or incorrect information recorded regarding diag- resultespecially inunder-resourced settings where there data ismanual collection. Passive case-findingledto poor information recorded on A higher accuracy agreement for data ontopography was observed with disagreement inonly 17%–21%of records which isnot anugatory Nonetheless, alsofor referral hospitals,active casefindingsignificantly increased thenumber of patients captured by 13%. betterreferral equipped passive hospitals, andactivefinding identified case asimilar proportion of patients amongallcasesrecorded (88%). 71%). Hence, active casefindingsignificantly improved casedetection; increasing thenumber of casesidentified by as41%. asmuch At activecaptured case-finding asignificantly largerof portion thetotal number of patients recorded thanpassive casefinding(95% versus active contributed case-finding morepassivethan cases (p<0.05). We alsoobserved thatfor resource-constrained the peripheral hospitals, tors duringdata abstraction,errorhuman inrecording resulted inmissingcaseseither case-findingmethod. However, inthe entire study, 97%. Neither of thetwo methods aloneidentifiedall patients reported. Since registry staff reviewed thesamerecords usedby data collec b) a) 7 -

Clinical Study which isimportant for confidence inpublishedresults andreceiving trustof those who usedata includingpublic healthplanners. Switzerland (Wanner et. al ecancer 2021, 15:1251; www.ecancer.org; DOI:https://doi.org/10.3332/ecancer.2021.1251 quality of data collection [4]. evident with 98%completeness and94%accuracy andcanbelinked with thenumber of specialistsinthehospital which tends to improve the recording. There isurbanbiasobserved inanother study conducted in Tanzania; of theKilimanjaro Cancer Registry [22].High performance was pleteness incasefinding. This was attributed to infrastructure challenges includinghumanandmaterial resources for proper diagnosisanddata Similar studiesincludeoneby Al-Haddad et. al. cessibility of healthmedicalcare centres. (geographicalremoteness, notransport,etc.), (oncologists) human andmaterial resources (laboratories, proper documentation, etc.) andinac ing tothese registries, support political will andcommitment to data support generation activities.Consequently, there isnoinfrastructure The resultshighlight thechallenges experienced in achieving cancer registration stable goodwith quality data. These includelackof fund- This isthefirst study of itskindinSouth Africaand one of very few in Africa dueto thegeneral scarcity of cancer registries inthiscontinent. active/passive: Information registered by applyingactive/passive casefindingmethods %: Percentage relative to total for the year andhospitalindicated Freq: Absolute number of cases **Referral hospitals *Peripheral hospitals Table 4. Agreement of topographic data between active andpassive casefinding. Table 3.Improvement of caseregistration by active casefindingmethod **Referral hospitals *Peripheral hospitals The proportions indicate thecasesaddedby active casefindingrelative to thenumber reported by passive casefinding Agreement 2014 Agreement 2015 Disagreement Agreement Bothcombined years Disagreement Total Disagreement Total method Case detection Total Bothcombined years 2015 2014 Year Freq 11 11 St Elizabeth* [24]). In both studies,infrastructure isnot anissue,buttheseregistries showcase theimportance of high-quality data 5 6 0 0 5 0 6

The same was observed intwo recent studiesfrom thehigh-income countries: Singapore (Fung et. al 100.0% 100.0% 100.0% 100.0% St Elizabeth* 0.0% 0.0% 0.0% 0.0% 0.0% % 52.1% 50.3% 54.2% Freq 4 4 0 8 0 4 0 4 8 Tafalofefe* [8] whose findingsinNigeria are similar to our study, becauseboth found evidence of incom- 100.0% 100.0% 100.0% 100.0% 0.0% 0.0% 0.0% 0.0% 0.0% Tafalofefe* % 18.3% 14.0% 22.3% Freq 10 23 12 33 26 38 2 3 5 UGHC** 100.0% 16.7% 11.5% 83.3% 16.7% 88.5% 11.5% 86.8% 13.2% % UGHC** 21.7% 23.3% 18.4% Freq 23 25 20 22 43 47 2 2 4 Frere** Frere** 100.0% 92.0% 90.9% 91.5% 4.2% 3.4% 5.1% 8.0% 9.1% 8.0% 9.1% 8.5% % Freq 10 10 19 19 9 9 0 0 0 Peripheral Peripheral 40.6% 38.6% 42.7% 100.0% 100.0% 100.0% 100.0% 0.0% 0.0% 0.0% 0.0% 0.0% % Freq 37 33 43 48 76 85 4 5 9 Referral Referral 13.3% 15.2% 10.6% 100.0% 10.8% 10.4% 89.2% 89.6% 10.8% 89.4% 10.4% 10.6% % Freq 104 42 46 53 95 58 Grand Total 4 5 9 19.1% 19.6% 18.5% All ) and [23]) and 100.0% 91.3% 91.4% 91.3% 8.7% 8.6% 8.7% 8.6% 8.7% % 8 -

Clinical Study ecancer 2021, 15:1251; www.ecancer.org; DOI:https://doi.org/10.3332/ecancer.2021.1251 Figure 3. Accuracy; proportion of patient records matched for topography andmorphology for both active andpassive datacase-finding methods by year. active/passive: Information registered by applyingactive/passive casefindingmethods %: Percentage relative to total for the year andhospitalindicated Freq: Absolute number of cases **Referral hospitals *Peripheral hospitals Table 5. Agreement of morphological data between active andpassive casefinding. Agreement 2014 Disagreement Agreement 2015 Total Disagreement Agreement Bothcombined years Total Disagreement Total Case detection method Freq 11 St Elizabeth* 4 1 5 5 1 9 6 2 100.0% 20.0% 16.7% 80.0% 20.0% 83.3% 16.7% 81.8% 18.2% % Freq 2 2 4 4 0 4 6 2 8 Tafalofefe* 100.0% 100.0% 50.0% 50.0% 50.0% 75.0% 25.0% 0.0% 0.0% % Freq 10 17 27 11 12 26 38 2 9 UGHC** 100.0% 16.7% 34.6% 83.3% 16.7% 65.4% 34.6% 71.1% 28.9% % Freq 22 18 25 40 22 47 3 4 7 Frere** 100.0% 12.0% 18.2% 88.0% 12.0% 81.8% 18.2% 85.1% 14.9% % Freq 10 15 19 6 3 9 9 1 4 Peripheral 100.0% 33.3% 10.0% 66.7% 33.3% 90.0% 10.0% 78.9% 21.1% % Freq 32 35 13 67 18 37 48 85 5 Referral 100.0% 13.5% 27.1% 86.5% 13.5% 72.9% 27.1% 78.8% 21.2% % Freq 104 38 44 14 82 22 46 58 Grand Total 8 100.0% 17.4% 24.1% 82.6% 17.4% 75.9% 24.1% 78.8% 21.2% % 9

Clinical Study ecancer 2021, 15:1251; www.ecancer.org; DOI:https://doi.org/10.3332/ecancer.2021.1251 in active casefinding will becost effective andisrecommended. ing for efficientinformationdigital exchange between external pathology laboratories to andhospitals address thesechallenges. Investment cases, lackof medicalinformation systems andlackofor funding underfunding. Africa mustseriously consider investing inspecialstaff train- Cancer registration in Africait hasprovedis possible but to beadifficulttaskdueto many factors, someof which include:difficulty intracing ECCR. evidentthat and accessutilising sources to multiple pathology including laboratories duringactive casefindingimproved data quality inthe data. Two methods usedcomplement eachother particularly insettings like South Africa with disparitiesinresource It distribution. was also of and impact in cancer these epidemiology. Furthermore,passive the case-findingmethod alonehasnegative implications for thequality of longerexposure time andexperience to improve their understanding of concepts as‘completeness such andaccuracy’ incancer registration ing information insomecases. This study highlights theimportance of regular training for data collectors andretain themintheproject for diagnosed would not have been reported. Infrequent reporting is associated with staff shortage resulting in delays in reporting and miss- Distinctchallenges hospital-specific incancer registration were observed, particularly inperipheral More hospitals. thanathird of thepatients Conclusion especially inresource-limited areas. quality of diagnoses. These limitations did noton thegeneral impact findings of our study highlighted but the challenges of passive reporting methods. Patients were doublecounted especially thosecollected by active casefinding.However, useof multiplesources improves the ECCRthe within as they areonly the passivethe using hospitals case-finding method which constitute only 20%of thetotal case-finding be marginally representative ofreporting the ofcapabilities other inSouth hospitals Africa. Furthermore, their results cannot becompared Our studylimitations. hassome The study population wasonly small; two peripheral andtwo referral hospitals were included, which may only Limitations Figure 4.Completeness; proportion of cancer cases reported by both active andpassive case-finding methods by facility. 10

Clinical Study 13. 12. 11. 10. ecancer 2021, 15:1251; www.ecancer.org; DOI:https://doi.org/10.3332/ecancer.2021.1251 References The authors have noconflicts of interest to declare. technical training skillsandsupport. Misssupport, Ngcwalisa Jamafor earliest the editing version of thedraftmanuscript andIARC and African Cancer Registry Network for the registrationin andoutside ing hospitals area for co-operation duringdata andsupport collection, Mr Thendo Ramaliba for thetechnical ance at theearly conception of thisstudy, data collectors inthefour selected hospitals without whom data would beincomplete, collaborat- The following colleagues are acknowledged for their valuable Mr inputs: Steady Chasimphaof Malawi Cancer Registry for advice andguid- Conference, KigaliRwanda in2017. This study was presentedas aposter inpart at the AfricanOrganization for Research and Training inCancer (AORTIC), 11thInternational producer of cancer drugsanddiagnostics.No other co-author nor theproject received from financialsupport Roche. This study was sponsored entirely by theSAMRC. Co-author Dr Borna Müller isemployed by F. Hoffmann-La Roche Ltd, apharmaceutical Acknowledgments, fundingandconflicts of interest 9. 8. 7. 6. 5. 4. 3. 2. 1. Muir, RG Skeet (Lyon: IARC) (1991) J Powel s10552-008-9288-5 tries; their interpretationpotential and usefor improvement cancer care Curado PM, Voti L andSortino-Rachou AM (2009)Cancer registration data andquality indicators inlow- andmiddle-income coun - Statistics SA (2013)Census 2011Municipal Report Eastern Cape (Pretoria: Statistics South Africa) J Cancer 127(10)2420–2429 https://doi.org/10.1002/ijc.25246 PMID: Somdyala,Bradshaw NIM, D, andGelderblom WCA, et al(2010)Cancer incidence inarural population of South Africa, 1998–2002 CancerInt 136(5)E470–E474 J Somdyala NI,Parkinand Sithole DM, N,et al (2015)Trendsin cancer incidence inrural Eastern Province; Cape South Africa, 1998–2012 J Cancer Epidemiol Al-Haddad BJS, Jedy-Agbaand OgaE, E, bjc.1994.428 PMID: Brewster D, Crichton J andMuir C(1994)How accurate are Scottish cancer registration data?Br Cancer J Parkin DM,Chen VW, andFerlay J, et al(1994)Comparability andQuality Control inCancer Registration (Lyon: IARC) 658–665 https://doi.org/10.1002/ijc.27646 Shimakawa Y, Bah E,and Wild CP, et al(2013)Evaluation of data quality at theGambia national cancer registry timeliness Bray F andParkin(2009) Evaluation DM of dataquality inthecancer registry: principlesandmethods.Part I:comparability, validity and 381–386 https://doi.org/10.1200/JGO.2015.002873 PMID: Zullig LL,Schroeder K, and Nyindo P, 45(5) 756–764https://doi.org/10.1016/j.ejca.2008.11.033 19128954 PMID: Parkinand Bray DM F (2009)Evaluation of data quality inthecancer registry: principles andmethods Part II.Completeness (Lyon: IARC) Bray F, Znaor A, and Cueva P, et (2014)Planningal and Developing Population-Based Cancer Registration inLow-and Middle-IncomeSettings EurCancer 45(5)747–755https://doi.org/10.1016/j.ejca.2008.11.032 J PMID: Data sourcesreporting and Cancer Registration, Principles andMethods edsOM 39(3)456–464https://doi.org/10.1016/j.canep.2015.03.010 7947104 PMCID: https://doi.org/10.1002/ijc.29224 etal (2016) 2033548 etal (2015)Comparability, diagnostic validity andcompleteness of Nigerian cancer registries Validation andquality assessment of theKilimanjaro cancer registry 28717724 PMCID:5493247 20162610 Cancer Causes Control 19117750 20 751–756https://doi.org/10.1007/ Jensen, Parkin, DM RMaclennan, CS 70 954https://doi.org/10.1038/ Int J CancerInt J J Glob Oncol EurCancer J 132(3) 2(6) 11 Int Int

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Clinical Study ecancer 2021, 15:1251; www.ecancer.org; DOI:https://doi.org/10.3332/ecancer.2021.1251 Appendix 1:Confidential cancer notification form Appendixes 13

Clinical Study ecancer 2021, 15:1251; www.ecancer.org; DOI:https://doi.org/10.3332/ecancer.2021.1251 ***Proportion of casesreported by passive casefindingamongallpatients captured over both study years combined **Referral hospitals *Peripheral hospitals Appendix 2.Resource differences between hospitalsobserved duringthestudy, possibly impactingquality of passive reporting. Pathology laboratory data linked to hospitalpatient data Completeness of passive reporting*** Uninterrupted reporting of new cancer cases Oncology-trained nurses present duringstudy period Oncologists present duringstudy period Parameter St Elizabeth* 65.7%     Tafalofefe* 84.5%     UGHC** 82.2%     Frere** 95.9%     14

Clinical Study