Establishing an Ethiopian Breast Cancer Registry: First Step Toward Improved Cancer Control Open Access

Love, Timothy Philip (2013)

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BACKGROUND: Breast cancer is the most common cancer in women and a leading cause of death and disability worldwide. Breast cancer in Ethiopia represents a major clinical problem but understanding the true scope of the problem will require enhanced breast cancer epidemiology. The purpose of this study was to determine the feasibility of establishing tumor registries in Ethiopia, starting initially with breast cancer cases treated at four hospitals in Ethiopia.

METHODS: Newly diagnosed breast cancers were retrospectively registered, using existing clinical data, with incidence dates ranging from September 2005 to March 2013. Patient demographics, medical information, tumor characteristics, treatment modalities, and outcome data were all input into a formal open source cancer registry software program (CanReg5, IARC) and subsequently analyzed using a separate statistical analysis software package (SAS 9.3).

RESULTS: Preliminary data from 318 patients were analyzed. Patients were 94.3% female with a mean age of 41.3 years (median age: 40; range: 16-80 yrs). Average time from onset of symptoms to time of presentation was 15.0 months; 72.0% underwent pathologic evaluation. Cancer stage distribution was: Stage 0 - 0 (0%), Stage I - 17 (5.4%), Stage II - 75 (23.6%), Stage III - 170 (53.5%), and Stage IV - 56 (17.6%). Therapeutic modalities post-diagnosis included: surgery: 236 (74.2%); referral for chemotherapy 87 (27.4%) and radiation therapy 55 (17.3%); and endocrine therapy: 32 (10.1%).

CONCLUSION: Feasibility of developing cancer registries in Ethiopia was established. As expected in a country with no screening mammography program, the distribution of cancer stage was much later than observed in more resourced countries. Development of tumor registration is essential to accurately assess the scope and detail of breast cancer incidence, staging, and mortality in Ethiopia and other low- or middle-income countries. Registries will enable monitoring of cancer stage, treatment patterns, and outcomes and inform policies to design and evaluate programs of breast cancer prevention, diagnosis, and treatment. Barriers to effective registration include lack of documentation of clinical data; inadequate resources to support registries; and no trained registrars in Ethiopia. Strategies to address such barriers will be critical to improving quality of cancer care.

Table of Contents

Chapter 1: Introduction - 1

Chapter 2: Literature Review - 8

- Breast Cancer in Ethiopia and LMICs - 8

- Cancer Registration - 15

- Breast Cancer Staging and Outcomes - 20

- Ethiopian Context - 21

Chapter 3: Methods - 26

- Registration Site Selection - 26

- Registry Establishment - 30

- Registrar Training - 34

- Approvals - 35

- Acknowledgement - 35

Chapter 4: Results - 37

- Breast Cancer Descriptive Statistics - 37

- Registry Establishment Process - 42

Chapter 5: Discussion - 46

Chapter 6: Conclusion and Future Direction - 54

References - 57

Appendix - 63

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