Long term follow-up of TBI in LMICs

Contextual challenges associated with Long-term outcomes in Low- and Middle- income countries


Building upon the NIHR GHRGN research outputs for Themes 1 & 2, sub-theme Theme 3D will focus on the collection of long-term outcomes, working with patients and healthcare professionals from low- and middle- income countries (LMICs) to design, develop and validate novel methods of collecting long-term data in low-resource settings using commonly available and inexpensive technologies.


Traumatic Brain Injury (TBI) is a major global health issue, with an estimated sixty-nine million individuals suffering from all-cause TBI each year [1], with LMICs facing more tribulation than more fortunate countries [2]. Outcome data is not reliably recorded in LMIC and despite improved injury surveillance data, data on disability and long-term functional outcomes remains poorly recorded, especially in resource poor settings [4]. To appreciate the full burden of these injuries and assess the efficacy of management decisions and patient treatment in LMICs, novel approaches to collect more complex long-term outcome data must be realised.


The core aim of this study is to understand the contextual challenges associated with long-term follow-up of patients following traumatic brain injury in Low- and Middle-Income Countries (LMICs). For the purpose of the study we define ‘Long-term’ as any data collected following discharge from hospital.


In this respect, the following objectives have been constructed:

  • To determine current approaches of long-term follow-up of TBI patients in LMICs
  • To explore the challenges associated with long-term follow-up of TBI patients in LMICs
  • To make recommendations for, and facilitate development of appropriate solutions to aid long-term follow-up of patients following TBI in LMICs


The preliminary stage of the project will encompass a cross-sectional pragmatic qualitative study using semi-structured interviews with physicians who have experience of neurotrauma in LMICs. To outline the theoretical framework to be utilised, we are first aiming to achieve an in-depth understanding prioritising a literal description of the contextual challenges first, followed by an understanding of the phenomena in a deeper sense though the interpretation and analysis of how the physicians draw meaning from their experiences [5], affording the collection of rich in-depth data through the examination of their viewpoints [6], with a pragmatic approach providing flexibility to our methodology, supporting the study to be designed in an appropriate way to address the research question [7]. It is envisioned that the qualitative stage of the project will conclude in May 2020, with a submission of outputs for publication and production of a final report by July 2020.


Questions to put forward to our international cohort of participants include:

  • What do youthink about the need for long-term follow-up of patients following TBI in your setting?
  • What do you consider to be the challenges associated with long-term follow-up of your patients with TBI?
  • Whatelse might be required in LMICs to facilitate long-term follow-up of patients following TBI?
  • What kind of technology would help in your country to record long-term follow-up?


Subsequently, our qualitative research analysis will inform the design, development and deployment both locally and internationally of a novel data collection tool, anticipated to be produced using short message service (SMS), a technology well received in symptom reporting pilot studies with high response and satisfaction rates [8]. A high-yield, structured screening survey primarily using numeric rating scales will be delivered, addressing holistic domains such as symptom reporting and quality of life, similar to that of the Glasgow Outcome Scale Extended (GOS-E) [9]. Following development, our focus will be on the assessment and validation of the data collection tool itself.



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