“I still don’t know if I am doing the right thing”: A qualitative study of experiencing cauda equina syndrome and its aftercare in the UK.

Abstract

Abstract STUDY DESIGN Qualitative, semi structured interviews. OBJECTIVES Cauda Equina Syndrome (CES) is a neurological emergency that can cause permanent disability to the lower limbs, including pain, weakness, and bladder, bowel and sexual dysfunction. There is little evidence on the lived experience of patients with different severities of CES. This study sought to address this. SETTING The interviews were conducted with persons who had experienced CES and been operated on for this condition in the UK. METHODS A sampling frame was used on a pre-existing database to select a maximum variation sample. Interviews were audio recorded and transcribed for thematic analysis supported by NVivo. RESULTS Data saturation was achieved with 22 patients (12 female, 10 male) of whom 10 had CES-incomplete and 12 had CES-complete. Average age was 46 years and time since the operation was 62 months. Most interviews took place at the patients’ home or workplace. Data analysis identified 4 main data themes: 1) Varying priorities of physical health; 2) A fragmented healthcare service; 3) The process of adjustment; and 4) Anticipatory anxiety and diminished sense of self-worth. CONCLUSION Currently, CES is managed as an acute condition in hospital. The data themes present CES can be a chronic condition, which requires holistic support to address long-term outcomes. This highlights the importance of using the Cauda Equina Syndrome Core Outcome Set (CESCOS) in CES research studies to record these outcomes.