Background

In Ethiopia, cancer accounts for about 5.8% of total national mortality. It is estimated that the annual incidence of cancer is ∼60 960 cases and the annual mortality is more than 44 000, which is likely an underestimation.1  Tikur Anbessa Specialized Hospital (TASH) in Addis Ababa is home to the nation’s first and largest pediatric hematology-oncology service, opened in 2013 in partnership with The Aslan Project (hereafter called Aslan). Although the survival rate for acute lymphoblastic leukemia is 80% or better in the United States, it is estimated that the survival rate is below 20% in Ethiopia. Part of the problem is that there is minimal well-documented demographic information regarding patients, their diseases, and disease outcomes. The World Health Organization (WHO) provides recommendations for creating cancer registries.2  Aslan provided funding to support data clerks in 2 hospitals in Ethiopia: TASH and Jimma University Specialized Hospital (Jimma, Ethiopia). Aslan also supported initial training on data collection for staff at those institutions, as well as staff at St. Paul’s Hospital Millennium Medical College (Addis Ababa, Ethiopia), and Ayder Comprehensive Specialized Hospital (Mekelle, Ethiopia).3  As part of the collaboration with the TASH/Aslan/University of North Carolina (UNC) pediatric hematology-oncology team, a team of UNC pharmacists traveled to TASH in March 2019 with the objective of performing a pre-implementation assessment for introducing a national pediatric cancer registry.

Methods

There were 3 specific aims around which the methods were designed: (1) assessment of the perceptions of the registry by hospital staff (eg, physicians, nurses, pharmacists, and data clerks who would be impacted by it), (2) evaluation of workflow gaps in how patient data are collected and entered into the medical chart and the registry, and (3) characterization of the current registry across participating sites, including which variables were being collected and how these variables compared with standards set by the WHO, and description of how the data were entered, including completeness.

We assessed the first aim by using a validated Organizational Readiness for Change (ORC) survey, which we administered to a multidisciplinary group of health care workers before and after a workshop presented by our team on the importance and benefits of a registry (Table 1). We assessed the second aim by using a structured problem-solving approach (A3 strategy) to map out the workflow and propose interventions (Figure 1). We achieved the third aim by comparing Excel spreadsheets from 2 different hospitals for differences between them as well as completion, consistency, and inclusion of variables recommended by WHO (Table 2).

Results

Table 1.

WHO ORC survey results before and after the session

QuestionAverage response
Pre-sessionPost-session
How committed is your facility to implementing this change? 2.6 2.8 
How motivated is your facility to implementing this change? 2.8 2.8 
How willing is your facility to work hard to implement this change? 2.8 
How much does your facility want to implement this change? 2.6 2.8 
How confident are you in effectively using the resources that are currently available to implement the program? 
How confident are you in effectively supporting clinicians as they adjust their clinical practice in response to this program? 2.6 2.8 
How confident are you in effectively solving problems that might arise in implementing this program? 
How confident are you in effectively coordinating the efforts of those involved in implementing this program? 1.8 2.8 
QuestionAverage response
Pre-sessionPost-session
How committed is your facility to implementing this change? 2.6 2.8 
How motivated is your facility to implementing this change? 2.8 2.8 
How willing is your facility to work hard to implement this change? 2.8 
How much does your facility want to implement this change? 2.6 2.8 
How confident are you in effectively using the resources that are currently available to implement the program? 
How confident are you in effectively supporting clinicians as they adjust their clinical practice in response to this program? 2.6 2.8 
How confident are you in effectively solving problems that might arise in implementing this program? 
How confident are you in effectively coordinating the efforts of those involved in implementing this program? 1.8 2.8 

Perception graded on a Likert scale from 1 (not motivated, committed, or willing) to 3 (very motivated, committed, or willing).

ORC, Organizational Readiness for Change.

Figure 1.

Workflow assessment (from A3 Strategy). Our team illustrated the workflow surrounding patient care and medical records upkeep in the medical file throughout a patient’s hematology/oncology care to facilitate visualization and discussion of changes in workflow needed to support the introduction of a pediatric cancer registry. Chemo, chemotherapy; MAR, medication administration record; MD, doctor of medicine [physician]; RN, registered nurse; Rx, prescription.

Figure 1.

Workflow assessment (from A3 Strategy). Our team illustrated the workflow surrounding patient care and medical records upkeep in the medical file throughout a patient’s hematology/oncology care to facilitate visualization and discussion of changes in workflow needed to support the introduction of a pediatric cancer registry. Chemo, chemotherapy; MAR, medication administration record; MD, doctor of medicine [physician]; RN, registered nurse; Rx, prescription.

Table 2.

Completeness compared with WHO recommendations

WHO/IARC VariablePresent in TASH RegistryPresent in Jimma Registry
The person   
 Personal identification Yes Yes 
 Date of birth No No 
 Sex Yes Yes 
 Ethnic group Yes Yes 
 Address (postal/ZIP code and phone number) Yes Yes 
The tumor   
 Incidence date Yes Yes 
 Primary tumor site Yes Yes 
 Laterality No No 
 Primary tumor histology No Yes 
 Behavior No No 
 Basis of diagnosis No No 
 Stage (condensed TNM) Yes Yes 
 Initial therapy Yes Yes 
  Surgery Yes Yes 
  Radiotherapy Yes Yes 
  Chemotherapy Yes Yes 
  Endocrine (hormones) No No 
 Sources of information Yes (diagnostics means) No 
Follow-up   
 Last follow-up date No Yes 
 Vital status (at last follow-up date) No No 
 Date of death Yes Yes 
WHO/IARC VariablePresent in TASH RegistryPresent in Jimma Registry
The person   
 Personal identification Yes Yes 
 Date of birth No No 
 Sex Yes Yes 
 Ethnic group Yes Yes 
 Address (postal/ZIP code and phone number) Yes Yes 
The tumor   
 Incidence date Yes Yes 
 Primary tumor site Yes Yes 
 Laterality No No 
 Primary tumor histology No Yes 
 Behavior No No 
 Basis of diagnosis No No 
 Stage (condensed TNM) Yes Yes 
 Initial therapy Yes Yes 
  Surgery Yes Yes 
  Radiotherapy Yes Yes 
  Chemotherapy Yes Yes 
  Endocrine (hormones) No No 
 Sources of information Yes (diagnostics means) No 
Follow-up   
 Last follow-up date No Yes 
 Vital status (at last follow-up date) No No 
 Date of death Yes Yes 

We noted many differences between the data sheets for the 2 hospitals and with WHO/International Agency for Research on Cancer (IARC) recommended variables. We estimated the overall rate of completion to be <50%.

ZIP, Zone Improvement Plan.

Summary

The hospital staff and leadership have generally positive perceptions of the pediatric cancer registry, which were enhanced by the workshop. The workflow assessment revealed several gaps that were systematically addressed by using a 3-phase implementation approach. The existing spreadsheet-based registry was missing WHO-recommended variables and had inconsistent completion because of the workflow gaps. During one of the upcoming visits by the implementation team, a pediatric oncology summary sheet will be incorporated into the patients’ medical records to better summarize their journey starting from diagnosis. This will be used by the data clerks in an enhanced spreadsheet to create a more complete data set (Table 3).

Table 3.

Summary of limitations identified from workflow assessment and proposed intervention(s)

LimitationProposed intervention
Phase 1 (<3 mo)  
 Lack of organization and standardization in charting resulting in incompleteness and inefficiency in registry data entry • Create a pediatric oncology summary sheet (POSH) for chemotherapy protocols and other outcomes to incorporate into the medical record and facilitate standardized documentation 
 Lack of data security • Create password-protected Excel spreadsheet with a standardized approach to data entry while issues regarding a more secure database are being resolved 
 Offsite storage of data from the clinic • Provide data clerks with a laptop to facilitate data collection
• Develop a system for backing up data 
 Timing of when data are collected during the patient admission could contribute to incompleteness and decrease efficiency • Explore alternative workflows to data collection (ie, discharge huddle, discharge/transition checklist) 
Phase 2 (3-6 mo)  
 Lack of prioritization of the pediatric cancer registry by the medical residents • Provide training for medical residents and data clerks regarding appropriate documentation
• Incorporate charting into resident evaluation 
 Need for larger team buy-in and communication • Create a multidisciplinary committee that includes physicians, nurses, data clerks, pharmacists, social workers, and a medical record keeper
• Initiate a huddle to reconcile missing information and gather information about discharge and follow-up plan
• Ensure completion of POSH and pass off to data clerk for registry entry 
 Need for synchronized data collection • Ensure compliance with current process across all hospitals (ie, TASH, Jimma, Mekelle) 
Phase 3 (6-12 mo)  
 Lack of data security and unsynchronized registry data • Initiate database with single local server with security housed in Ethiopia
• Explore different databases to find ideal solution 
 Transport of medical chart to and from medical centers is the responsibility of the parents, leading to high rate of missing charts • Designate individual responsible for transporting patient chart between locations to prevent parents/family from possibly losing medical charts during transportation 
LimitationProposed intervention
Phase 1 (<3 mo)  
 Lack of organization and standardization in charting resulting in incompleteness and inefficiency in registry data entry • Create a pediatric oncology summary sheet (POSH) for chemotherapy protocols and other outcomes to incorporate into the medical record and facilitate standardized documentation 
 Lack of data security • Create password-protected Excel spreadsheet with a standardized approach to data entry while issues regarding a more secure database are being resolved 
 Offsite storage of data from the clinic • Provide data clerks with a laptop to facilitate data collection
• Develop a system for backing up data 
 Timing of when data are collected during the patient admission could contribute to incompleteness and decrease efficiency • Explore alternative workflows to data collection (ie, discharge huddle, discharge/transition checklist) 
Phase 2 (3-6 mo)  
 Lack of prioritization of the pediatric cancer registry by the medical residents • Provide training for medical residents and data clerks regarding appropriate documentation
• Incorporate charting into resident evaluation 
 Need for larger team buy-in and communication • Create a multidisciplinary committee that includes physicians, nurses, data clerks, pharmacists, social workers, and a medical record keeper
• Initiate a huddle to reconcile missing information and gather information about discharge and follow-up plan
• Ensure completion of POSH and pass off to data clerk for registry entry 
 Need for synchronized data collection • Ensure compliance with current process across all hospitals (ie, TASH, Jimma, Mekelle) 
Phase 3 (6-12 mo)  
 Lack of data security and unsynchronized registry data • Initiate database with single local server with security housed in Ethiopia
• Explore different databases to find ideal solution 
 Transport of medical chart to and from medical centers is the responsibility of the parents, leading to high rate of missing charts • Designate individual responsible for transporting patient chart between locations to prevent parents/family from possibly losing medical charts during transportation 

Our team presented these recommendations to physicians and other hospital stakeholders to guide future endeavors.

Authorship

Conflict-of-interest disclosure: The authors declare no competing financial interests.

Correspondence: Benyam Muluneh, University of North Carolina Medical Center, 301 Pharmacy Lane, Chapel Hill, NC 27599; e-mail: bmuluneh@unc.edu.

References

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