Epidemiology, outcomes and experiences of living with traumatic spinal cord injury in Botswana

Abstract: When sustaining a traumatic spinal cord injury (TSCI) there will be substantial changes and challenges in a person’s life no matter where they live. In many parts of the world, well-structured systems of care as well as governmental support assist the injured person to optimize his/her level of function and inclusion into society. In many resource-constrained settings those systems are often lacking which could lead to lower functional outcomes, as well as substantially higher morbidity and mortality rates. To work on prevention and to develop TSCI-specialized care, knowledge of the current situation is crucial; however the majority of studies in this field are conducted in resource-rich settings, even though the circumstances can be very different in the less resourced countries. Therefore, the aims of these studies were to deepen the understanding of living with TSCI in Botswana and to explore the local epidemiology and outcomes of TSCI. The studies were conducted at the Princess Marina Hospital (PMH) in the capital Gaborone, and primarily at the recently (2010) established SCI-rehabilitation centre. Both qualitative and quantitative methods were used. Study I explored the experiences of people living with a TSCI for at least 2 years. Study II-IV were mainly prospective studies on the same sample; namely all persons who were admitted with acute TSCI to PMH during a 2-year period; followed from admission (study II), throughout hospitalization to discharge (study III), and to the second yearly control (study IV). The main findings were the importance of personal resources such as a strong sense of self and a positive attitude in order for the informants to feel more fully integrated into society. Family support and/or having a source of income were crucial for establishing and strengthening one’s self. Spirituality and faith were seen as facilitators, while inaccessibility was a barrier from social inclusion (study I). The annual incidence of TSCI was 13 per million, with traffic-related injuries being the vast majority (68%), and of those almost 3/4 had been involved in single accidents. Stabilizing surgery was performed after a median of 12 days and mortality during the acute phase was 20% (study II). For the 39 persons who survived the acute phase, the median hospitalization was 5 months (including acute care and rehabilitation) with longer time for those with complete injuries and for those who developed pressure ulcers (n=16). Other common complications were pain (n=27) and urinary tract infections (n=11). All patients, except two, were discharged home and supplied with wheelchairs and other assistive devices as recommended by the therapists (study III). The follow-up rate with structured multi-professional yearly controls was 71%. The rates of pressure ulcers and urinary tract infections had increased in the home environment; however no one had died during the 2-year follow-up period. Finally 44% had resumed work or studies (study IV). In conclusion, the outcomes for people with TSCI in Botswana were to some extent approaching the situation that is valid in some high-income countries. For example, the provision of technical aids, return-to-work, follow-up and survival rates 2 years post discharge are comparable. In other ways, the situation was closer to low-income countries, especially regarding the acute management, leading to long delays to surgery, high rates of complications and in-hospital mortality. As a middle-income country Botswana has financial power to persist to develop the management of people with TSCI in order to decrease secondary complications and acute mortality, which likely would contribute to continuous improvements of outcomes and survival after TSCI.