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Table 1 Modified EFISS framework for traumatic brain injury registry in Uganda

From: Traumatic brain injury in Uganda: exploring the use of a hospital based registry for measuring burden and outcomes

 

EFISS characteristics

Application to TBI registry (Uganda)

Data quality characteristics

 Data completeness

Data completeness will refer to an assessment of the proportion of: (i) missing; (ii) ‘not known’; (iii) ‘other specified’; and (iv) ‘unspecified’ data recorded for key characteristics of the injured population

This is ensured by developing a set of required questions which have mandatory data entry check points in the electronic version

 Sensitivity

Sensitivity will refer to the ability to correctly detect all cases of true injury events that the data collection intended to detect in the target population

The registry allows a “tag” for patients with “suspected TBI”. They are then followed to assess how many are definitive cases of TBI

 Specificity

Specificity will refer to the ability to correctly detect all non-injury cases that the data collection should not have detected as injury cases in the target population

The registry allows a “tag” for patients with “suspected TBI”. They are then followed to assess how many are not TBI cases

 Positive predictive value

The PPV will refer to the number of correctly identified true injury cases divided by the total number of cases that are identified (correctly and incorrectly) as an injury case from the target population

This gives denominator for calculating the proportion of definitive TBI cases among all (definitive and suspected) TBI cases

 Representativeness

Representativeness will refer to the ability of the collection to provide an accurate representation of the distribution of key characteristics of the injured population

The registry is piloted in a tertiary care hospital which is the major referral center in Uganda. It will help to capture a representative sample of TBI cases

Operational characteristics

 Clear purpose and objective(s)

The purpose of the injury surveillance system, the reason why the system exists, and objectives of the injury surveillance system, what the information from the system is used for, should be described

The purpose and objectives of the TBI registry is outlined at the beginning of registry implementation and is shared with all the members of local research team

 Data collection process

The method of data collection for an injury surveillance system and the number of steps involved in data collection should be examined using a data collection flow chart

A patient flow chart highlighting various steps in patient enrollment and follow-up has been developed and serves as a reference for the data collection team to ensure uniformity in the process. (Additional file 1: patient and data flow for KiTBIR)

 Clear case definition

The injury case definition adopted by an injury surveillance system to identify cases should be described

TBI will be defined based on the history of direct injury to head, or a mechanism involving injuries to multiple body regions such as fall or road traffic injuries or assault. Patients with no mechanism suggestive to indicate head injury or traumatic brain injury will not be included

 Timeliness

Timeliness will refer to the time taken to accomplish each of the three surveillance phases of: (i) data collection; (ii) data analysis and interpretation; and (iii) dissemination

Regular meetings of the teams ensure the timeliness of each step. A dissemination plan for sharing the results will be developed

 Quality control measures

The quality control measures regularly utilized by the agency responsible for the injury surveillance system should be identified

Electronic quality assurance by standardized terms with minimal text entry. Quality control measures include periodic quality checks on database and on-site checks with data collectors

 Data confidentiality

The methods by which an individual’s information in the injury surveillance system is safe guarded against disclosure should be described

Personal identifiers are not stored on the database. Additionally, data security measures are taken to ensure data safety on tablets and server during data upload and transfer

 System security

The data access requirements (e.g. password protection) that safe guard against the disclosure of confidential information should be described

All tablets that are used for data collection, server and data transfer portal have multiple layers of security to keep data secure at all stages

 Uniform classification systems

The classification system(s) used to record information in the injury surveillance system for variables in the WHO’s core minimum and optimal data sets for injury surveillance should be identified

A training manual with standard definitions and details of each variable is available

Practical characteristics

 Data accessibility

The method by which potential data users access data from the injury surveillance system should be reported

The data will be accessible only to the research team. The data will be kept on a secure server. Secure data transfer mechanisms will be established

 Routine data analysis

The routine data analyses conducted using data from the injury surveillance system by the agency responsible for the surveillance system should be described

Reports will be generated and detailed data analysis will be conducted every 2 months to explore missing values and to understand emerging trends in the data being collected

 Guidance material to aid interpretation

The availability of guidance material on the interpretation of data from the injury surveillance system should be described

A training manual is developed giving information related to each question and its options

 Usefulness

Usefulness will refer to the ability to contribute to the identification of potential key areas for preventive action

It is anticipated that this TBI data will help to understand the TBI burden and associated risk factors in Uganda. This evidence will inform the development of clinical guidelines for TBI management in resource constraint settings. This will also facilitate the understanding of feasibility and utility of electronic registry in such settings