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CREATION OF A NOVEL CANCER 
AND HIV LINKED REGISTRY: 
A PILOT IN TWO COUNTIES IN 
KENYA 
By Professionals Against Cancer
Professionals Against Cancer 
Research Team 
• Principal Investigators: 
• Dr. Lucy Muchiri1 
• Dr. Jamilla Rajab1 
• Co-investigators: 
• Prof. Christine Kigondu1 
• Prof. Peter Waiganjo2 
• Dr. Walter Konya3 
• Dr Michieka Michieka4 
1. Dept. HH.. PPaatthhoollooggyy,, UUOONN 
22.. SScchhooooll ooff CCoommppuuttiinngg && IInnffoorrmmaattiiccss,, UUOONN 
33.. SStt.. MMaarryy´ss MMiissssiioonn HHoossppiittaall,, NNaaiirroobbii 
44.. KKaatthhiiaannii HHoossppiittaall,, MMOOHH
Background 
• Cancer data in Kenya is disparate, hospital-derived 
and not representative of extent of 
National cancer burden 
• Currently only three PBC registries in place: 
Nairobi, Uasin Gishu and Kisumu 
• Prevalence of cancer on the rise, recognized 
as third commonest cause of death in Kenya 
• Long-term survivors of HIV disease at risk of 
malignancies
Background cont´d 
• Quality population-based HIV-linked cancer 
registries would provide clear evidence of 
differences in disease burden to catalyze 
appropriate resource allocation. 
• This innovative project is easily scaled up 
beyond a one county pilot to regional and 
national-based registries 
• Cancer data is paramount for planning for 
cancer prevention & management 
• Long-term implementation of National Cancer 
Act 2012
Broad Objective 
• To Create a Cancer/HIV and AIDS – linked data base on a 
unique mobile telephony platform that addresses 
knowledge, planning and intervention needs of various 
stakeholders 
Specific objectives: 
• Pilot a HIV linked cancer registry in two counties 
• Create a uniquely mobile telephony-accessible 
Cancer/HIV/AIDS-linked registry 
• Create demand for novel interventions to address IEC 
needs based on regional common cancers & HIV linked 
data
Study Design and methodology 
• Study design: 
• Descriptive- prospective, retrospective 
• Study areas: 
• The project piloted in two counties, a rural 
and rural/urban setting Nakuru and Embu. 
Data collected from all level 3, 4, 5 hospitals, 
and private health care facilities in the two 
counties.
Study population 
Study targeted two populations - patients 
diagnosed with cancer & those with cancer 
and HIV/AIDS: 
• Diagnosis of cancer confirmed by a 
histology/cytology report for the general 
registry. 
• All individuals with cancers and HIV positive 
for the HIV-cancer linked registry.
Methodology…..cont´d 
• Cancer data was collected by trained 
registrants using the standard CANREG5(1) 
data entry software system 
• HIV data was obtained from the NASCOP 
databanks in the all health facilities in the 2 
counties 
• Cancer diagnosis based on histology/cytology 
& published imaging and clinical guidelines 
1. International Agency for Research on Cancer (IARC)
Data Management 
• Data was validated and entered into the 
CANREG 5 software 
• Data cleaned & analyzed to obtain specific 
cancer incidence, prevalence and trends in the 
two counties 
• Development of App for a novel, uniquely 
designed mobile telephony platform in process 
• Minimum cancer registry data set for mobile 
App already determined, informed by data 
collected & KAP study
PRELIMINARY RESULTS 
• Frequencies , Trends and early comparative 
analysis 
• Incidence data still to be analyzed once all 
sources are covered in both counties 
• KAP studies already done (data analysis not 
completed) 
• Uploading of data to mobile telephony 
platform ongoing
Cancer Registry Frequencies 2010 - 2014 
Embu County (Pop 516,212)* 
– Total cases 1673 
– Total complete cases 1646 (98%) 
– Female 62%; Male 38% 
– Prevalence 64/100,000 
Nakuru County (Pop 1,603,325)* 
– Total cases 2254 
– Total complete cases 2057 (91%) 
– Female 58%; 42% 
– Prevalence 34.3/100,000 
* NCPD - Population census 2009
Top 10 Most Frequent Cancers 
Embu County Nakuru County 
Female 
Male
Globocan 2012* Kenya 
Estimated age-standardized incidence 
and mortality rates: males 
Estimated age-standardized incidence 
and mortality rates: females 
* Globocan, 2012: Estimated cancer incidence, Mortality and Prevalence . IARC 2012
Top Three Female Cancers: Age Profile 
• Embu 
• Nakuru
Top Three Male Cancers: Age Profile 
Embu 
Nakuru
HIV with Cancer Cases 
Embu 
Nakuru
HIV with Cancer Cases 
Embu 
Nakuru
DISCUSSION 
• Preliminary results of population data shows emerging 
geographical differences between two counties; but 
similar top five as in Globocan estimates 
• Although top five cancers are similar in both counties 
for males and females, notable colon cancer cases in 
Embu in both males & females; not in Nakuru 
• Bladder cancer flagged in Nakuru males, not in Embu. 
• Both Cervical and Breast cancer most common among 
females in both counties, similar to Globocan figures 
• Unlikely to be significant differences on analysis of 
incidence
Conclusions 
• Establishment of Population-based regional 
cancer registries are possible (to implement 
National Cancer Act 2012) 
• Provide valuable customized (county) cancer 
information of frequencies, incidence, age-specific 
data/profiles and trends 
• Identifies challenges, gaps for improvements 
• Provides valuable cancer data for varied 
stakeholders and uses on accessible mobile 
telephony platform
Challenges 
• Stakeholder unwillingness to participate (MOST 
unaware of Cancer Act 2012), and MOH letters of 
support, ERC approval 
• Poor data archiving limiting case tracing, poor 
indexing of case files by International disease 
classification (ICD) 
• Few trained cancer registrars in all health 
facilities 
• Poor quality cancer documentation by all levels 
of health care providers involved in cancer care 
• Limited resources to trace all county cancer 
cases. 
• Incomplete documentation of HIV status
Acknowledgement 
• Grand Challenges Canada – provided research grant 
• Division of NCD, Ministry of Health 
• Embu and Nakuru County governments, & County Health 
Executives 
• Private health facilities in both counties 
• Health care providers in all the facilities, especially the Med 
Sups. 
• Summit Pharmaceuticals – grant manager 
• KEMRI – technical & training support, especially Anne Korir

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Creation of a novel cancer & hiv linked registry by jamilla rajab

  • 1. CREATION OF A NOVEL CANCER AND HIV LINKED REGISTRY: A PILOT IN TWO COUNTIES IN KENYA By Professionals Against Cancer
  • 2. Professionals Against Cancer Research Team • Principal Investigators: • Dr. Lucy Muchiri1 • Dr. Jamilla Rajab1 • Co-investigators: • Prof. Christine Kigondu1 • Prof. Peter Waiganjo2 • Dr. Walter Konya3 • Dr Michieka Michieka4 1. Dept. HH.. PPaatthhoollooggyy,, UUOONN 22.. SScchhooooll ooff CCoommppuuttiinngg && IInnffoorrmmaattiiccss,, UUOONN 33.. SStt.. MMaarryy´ss MMiissssiioonn HHoossppiittaall,, NNaaiirroobbii 44.. KKaatthhiiaannii HHoossppiittaall,, MMOOHH
  • 3. Background • Cancer data in Kenya is disparate, hospital-derived and not representative of extent of National cancer burden • Currently only three PBC registries in place: Nairobi, Uasin Gishu and Kisumu • Prevalence of cancer on the rise, recognized as third commonest cause of death in Kenya • Long-term survivors of HIV disease at risk of malignancies
  • 4. Background cont´d • Quality population-based HIV-linked cancer registries would provide clear evidence of differences in disease burden to catalyze appropriate resource allocation. • This innovative project is easily scaled up beyond a one county pilot to regional and national-based registries • Cancer data is paramount for planning for cancer prevention & management • Long-term implementation of National Cancer Act 2012
  • 5. Broad Objective • To Create a Cancer/HIV and AIDS – linked data base on a unique mobile telephony platform that addresses knowledge, planning and intervention needs of various stakeholders Specific objectives: • Pilot a HIV linked cancer registry in two counties • Create a uniquely mobile telephony-accessible Cancer/HIV/AIDS-linked registry • Create demand for novel interventions to address IEC needs based on regional common cancers & HIV linked data
  • 6. Study Design and methodology • Study design: • Descriptive- prospective, retrospective • Study areas: • The project piloted in two counties, a rural and rural/urban setting Nakuru and Embu. Data collected from all level 3, 4, 5 hospitals, and private health care facilities in the two counties.
  • 7. Study population Study targeted two populations - patients diagnosed with cancer & those with cancer and HIV/AIDS: • Diagnosis of cancer confirmed by a histology/cytology report for the general registry. • All individuals with cancers and HIV positive for the HIV-cancer linked registry.
  • 8. Methodology…..cont´d • Cancer data was collected by trained registrants using the standard CANREG5(1) data entry software system • HIV data was obtained from the NASCOP databanks in the all health facilities in the 2 counties • Cancer diagnosis based on histology/cytology & published imaging and clinical guidelines 1. International Agency for Research on Cancer (IARC)
  • 9. Data Management • Data was validated and entered into the CANREG 5 software • Data cleaned & analyzed to obtain specific cancer incidence, prevalence and trends in the two counties • Development of App for a novel, uniquely designed mobile telephony platform in process • Minimum cancer registry data set for mobile App already determined, informed by data collected & KAP study
  • 10. PRELIMINARY RESULTS • Frequencies , Trends and early comparative analysis • Incidence data still to be analyzed once all sources are covered in both counties • KAP studies already done (data analysis not completed) • Uploading of data to mobile telephony platform ongoing
  • 11. Cancer Registry Frequencies 2010 - 2014 Embu County (Pop 516,212)* – Total cases 1673 – Total complete cases 1646 (98%) – Female 62%; Male 38% – Prevalence 64/100,000 Nakuru County (Pop 1,603,325)* – Total cases 2254 – Total complete cases 2057 (91%) – Female 58%; 42% – Prevalence 34.3/100,000 * NCPD - Population census 2009
  • 12. Top 10 Most Frequent Cancers Embu County Nakuru County Female Male
  • 13. Globocan 2012* Kenya Estimated age-standardized incidence and mortality rates: males Estimated age-standardized incidence and mortality rates: females * Globocan, 2012: Estimated cancer incidence, Mortality and Prevalence . IARC 2012
  • 14. Top Three Female Cancers: Age Profile • Embu • Nakuru
  • 15. Top Three Male Cancers: Age Profile Embu Nakuru
  • 16. HIV with Cancer Cases Embu Nakuru
  • 17. HIV with Cancer Cases Embu Nakuru
  • 18. DISCUSSION • Preliminary results of population data shows emerging geographical differences between two counties; but similar top five as in Globocan estimates • Although top five cancers are similar in both counties for males and females, notable colon cancer cases in Embu in both males & females; not in Nakuru • Bladder cancer flagged in Nakuru males, not in Embu. • Both Cervical and Breast cancer most common among females in both counties, similar to Globocan figures • Unlikely to be significant differences on analysis of incidence
  • 19. Conclusions • Establishment of Population-based regional cancer registries are possible (to implement National Cancer Act 2012) • Provide valuable customized (county) cancer information of frequencies, incidence, age-specific data/profiles and trends • Identifies challenges, gaps for improvements • Provides valuable cancer data for varied stakeholders and uses on accessible mobile telephony platform
  • 20. Challenges • Stakeholder unwillingness to participate (MOST unaware of Cancer Act 2012), and MOH letters of support, ERC approval • Poor data archiving limiting case tracing, poor indexing of case files by International disease classification (ICD) • Few trained cancer registrars in all health facilities • Poor quality cancer documentation by all levels of health care providers involved in cancer care • Limited resources to trace all county cancer cases. • Incomplete documentation of HIV status
  • 21. Acknowledgement • Grand Challenges Canada – provided research grant • Division of NCD, Ministry of Health • Embu and Nakuru County governments, & County Health Executives • Private health facilities in both counties • Health care providers in all the facilities, especially the Med Sups. • Summit Pharmaceuticals – grant manager • KEMRI – technical & training support, especially Anne Korir

Editor's Notes

  1. Health care facilities in the broadest sense
  2. Denominator – population of the two counties from 2009 national Census
  3. Though data collection and analysis is incomplete, we needed to share with you what we are doing to you potential stakeholders, to create awareness, to get buy-in.
  4. Similar profiles in both counties. Age most affected reflects a 10yr shift from incidence figures as chronic HIV disease is the risk factor for cancer.
  5. Not surprisingly, Cacervix and Kaposi´s sarcoma are the commonest malignancies associated with Chronic HIV disease. Totals Nakuru F 110, M 54 total 164; Embu F 66, M 42, Total 108.