Community-based interventions to prevent serious complications and premature death after spinal cord injury in Bangladesh

Abstract

Abstract Spinal cord injury (SCI) causes serious disability and mortality. Mortality following SCI is higher in low- and middle-income countries (LMICs) than high-income countries (HICs), although accurate data on morality are not yet available from LMICs including Bangladesh. Anecdotal evidence suggests that many people with SCI in Bangladesh die soon after discharge, and those who survive experience life-threating secondary health complications and impoverishment. The most common secondary health complications are pressure ulcers. These are largely preventable and manageable if people have appropriate access to support and advice. Prevention of pressure ulcers and other secondary complications is a better alternativethan treatment for people with SCI in Bangladesh and other LMICs where specialised care following discharge is limited. However, people with SCI need support and adequate knowledge following discharge about self-care management to prevent and manage their complications.I proposed, developed and tested a community-based model of care to help and support people with SCI after discharge.It primarily involved telephone based advice and support supplemented with a few home visits which can be easily provided in a LMIC like Bangladesh. My hypothesis was that this community-based model of care could help people with SCI to prevent and manage their complications after discharge from hospital. This model of care may be a more viable alternative than other models of community-based support post-discharge in Bangladesh where health care services are insufficient and it is often difficult for people to access specialised care. However, no study has investigated the effectiveness of this model of care. Similarly, no study has looked at survival post-discharge. I sought to address these knowledge gaps in my thesis.13 My thesis includes a cohort study designed to determine five-year survival in people with SCI in Bangladesh following discharge from hospital and to develop a prediction model for those at high risk of death. The cohort study also looked at the health status and quality of life (QoL) of these people six years after discharge. My thesis also includes a randomised controlled trialcalled the CIVIC trial,designed to determine the effectiveness of a low-cost community-based intervention to support people with SCI who were recently discharged from hospital in Bangladesh. The acronym CIVIC was derived from the title of the trial, namey –Community-based InterVentions to prevent serIous Complications following spinal cord injury in Bangladesh.Three protocols were developed as a part of the CIVIC trial; these are (i) a protocol for the CIVIC trial,(ii) a protocol for the process evaluation of the CIVIC trial, and (iii) a Statistical Analysis Plan (SAP) for the CIVIC trial.The protocol for the CIVIC trial was developed prior to my doctoral degree, and the latter two protocolswere developed as a part of my doctoral degree. Moreover, a cross-sectional study was conducted from the baseline data of the CIVIC trial to determine the level of impoverishment following SCI in Bangladesh. The summary of the cohort study and CIVIC trialare provided in the next section. Both studies had multiple publications associated with them.