Abstract
OBJECTIVE/BACKGROUND: In spinal cord injury (SCI) medicine, informing a patient with a neurologically complete SCI of the poor prognosis ("bad news") for significant neurological recovery (e.g. ambulation) is difficult. Few guidelines exist for clinicians and the wishes of patients in receiving this information are currently not known. The goal of this pilot study was to determine when, by whom, and in what setting persons with neurologically complete traumatic SCI want to hear of their prognosis. METHODS: Subjects with a >3 months motor complete SCI above T10 were recruited to complete an online survey, from three geographically different acute rehabilitation centers, to obtain retrospective information on their experiences of receiving poor prognosis. A mixed methods approach was used to obtain data on individual experiences and a combination of quantitative and qualitative analyses was used to assess patterns in individual responses. RESULTS: 60 individuals were recruited for the study and 56 participants completed the survey. Most heard their prognosis from a physician, in the acute care hospital (61%), with the patient initiating the conversation (64%). Patient recommendations reveal that most individuals with traumatic SCI prefer to be given the poor prognosis for neurological recovery by a physician and early after injury. There were no differences in patient experience nor recommendations based on demographic background (i.e. sex, age, race, or education level). CONCLUSION: The majority of patients surveyed report wanting to know their prognosis early after injury and to hear the information by a physician in a clear and sensitive manner. This study marks the first step towards defining how and when to break the news regarding poor prognosis for neurological recovery including ambulation after severe (neurological complete) traumatic SCI from the patients' perspective.