Patients’ Experience of Uncertainty in Diagnosis and Treatment after a Traumatic Brachial Plexus Injury: Implications for Rehabilitation

Keywords: Trauma; Rehabiliation; Qualitative Purpose: A brachial plexus injury (BPI) is a devastating injury to the nerves in the upper limb with life changing consequences. Despite advancements in surgery and therapy, outcome is often unpredictable, depending on time to treatment, severity of injury and capacity for nerve regeneration. There is evidence to suggest clinicians find counselling patients regarding outcome difficult because of this unpredictability. Although this uncertainty is one of the biggest challenges in a BPI, it's impact on people affected has not been explored. This qualitative study aimed to explore the impact uncertainty has on people with a BPI. Methods: We purposively recruited adult patients (n = 13) in terms of age, time since injury, severity of injury and sex, with traumatic BPIs in a NHS tertiary peripheral nerve injury clinic. Semi- structured interviews were conducted using a topic guide informed by literature, researchers experience and a patient adviser. Reflexive thematic analysis was undertaken by the lead author concurrently with data collection with the emerging analysis reflexively examined by the research team to confirm the emerging themes. This reflexive approach to analysis increased trustworthiness. Results: Nine men and four women, with injuries experienced between 9 and 62 months ago, participated. Eight of them were involved in road traffic collisions. Within the central organising concept of “Living with uncertainty “three themes were identified. “I don’t know what happened to me”. There was frustration about how prioritisation of other injuries and lack of non-specialist health professionals’ awareness of the injury delayed diagnosis. Once diagnosed participants struggled to deal with the uncertain outcome of the injury and its treatment. “I went to work one day… and then it all changed” This theme focused on the frequent loss of previous identity, including work and family roles and uncertainty in the future. “Coping with uncertainty” highlighted how health professionals, family and friends played an important role supporting these individuals to cope. Participants also discussed how hope and not being forgotten by the health professionals was important. Conclusion(s): People with traumatic BPI face uncertainty regarding early diagnosis and likely outcome in addition to uncertainties in their role in society and family. Health professionals, family and friends can help participants deal with the uncertainty. Impact: To reduce uncertainty regarding traumatic BPI diagnosis it is essential to raise the awareness of non-specialist health professionals to the possibility of a brachial plexus injury in polytrauma situations. This could accelerate diagnosis, lessening uncertainty for the patient and speed up access to appropriate treatment. Outcome following a BPI is uncertain and health care professionals may be unclear how to support these patients. This study suggests health care professionals need to be sensitive to patient's uncertainties regarding the injury and manage the provision of information carefully. Patients need information appropriate to their needs which does not undermine their hopes. Funding acknowledgements: Caroline Miller, Clinical Doctoral Research Fellow, is funded by Health Education England (HEE) / National Institute for Health Research (NIHR) for this research project (ICA-CDRF-2017-03-039).