An assessment of patient-reported long-term outcomes following surgery for cauda equina syndrome

Background Data regarding long-term outcomes following surgery for cauda equina syndrome (CES) is scarce. In addition, these studies rely on patient descriptions of the presence or absence of symptoms, with no gradation of severity. This study aimed to assess long-term bladder, bowel, sexual and physical function using validated questionnaires in a CES cohort. Methods A pre-existing ethically approved database was used to identify patients who had undergone surgery for CES between August 2013 and November 2014. Patients were contacted over a 1-month period between August and September 2017 and completed validated questionnaires via telephone, assessing bladder (Urinary Symptom Profile), bowel (Neurogenic Bowel Dysfunction Score), sexual dysfunction (Arizona Sexual Experiences Scale) and physical function (Physical Component Summary of SF-12 Questionnaire), with scores compared between those presenting with incomplete CES (CES-I) and CES with retention (CES-R). Patients were also asked which of their symptoms currently they would most value treatment for and what healthcare services they had accessed post-operatively. Results Forty-six of 77 patients (response rate 72%, inclusion rate 60%) with a mean age of 45 years (21-83) and mean time since admission of 43 months (range 36-60) took part in the follow-up study. The prevalence of bladder dysfunction was 76%, bowel dysfunction 13%, sexual dysfunction 39% and physical dysfunction 48%. Patients presenting with CES-R had significantly worse long-term outcomes in bladder (stream domain), bowel and sexual function in compared to those with CES-I. Pain was chosen as the symptom patients would most value treatment for by 57%, but only 7% reported post-operative pain management referral. Conclusions With a mean follow-up time of 43 months, these findings confirm the high prevalence of long-term bladder, sexual and physical dysfunction in CES patients and that a diagnosis of CES-R confers poorer outcomes. This study provides useful, objective data to guide the expectations of patients and clinicians.