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. H. Pathology, UON1. Dept. H. Pathology, UON2. School of Computing & Informatics, UON2. School of Computing & Informatics, UON3. St. Mary´s Mission Hospital, Nairobi3. St. Mary´s Mission Hospital, Nairobi4. Kathiani Hospital, MOH4. Kathiani Hospital, MOH

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 Nakuru CountyEmbu County

Female

Male

Globocan 2012* Kenya

* Globocan, 2012: Estimated cancer incidence, Mortality and Prevalence . IARC 2012

Estimated age-standardized incidence and mortality rates: males

Estimated age-standardized incidence and mortality rates: females

Top Three Female Cancers: Age Profile

• Nakuru

• Embu

Top Three Male Cancers: Age Profile

Nakuru

Embu

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