Decisional regret and impacts on quality of life following genitourinary reconstruction for neurogenic bladder: A comparison between acquired and congenital spinal cord injury

João Pedro Emrich Accioly; James Bena; Huijun Xiao; Stacy Jeong; Roger K Khouri; Kenneth W Angermeier; Molly Dewitt-Foy; Gregory Nemunaitis; Hadley M Wood

doi:10.1002/pmrj.13157

Decisional regret and impacts on quality of life following genitourinary reconstruction for neurogenic bladder: A comparison between acquired and congenital spinal cord injury

PM R. 2024 Apr 27. doi: 10.1002/pmrj.13157. Online ahead of print.

Authors

João Pedro Emrich Accioly¹, James Bena², Huijun Xiao², Stacy Jeong¹, Roger K Khouri¹, Kenneth W Angermeier¹, Molly Dewitt-Foy¹, Gregory Nemunaitis³, Hadley M Wood¹

Affiliations

¹ Department of Urology, Glickman Urological and Kidney Institute, Cleveland Clinic Foundation, Cleveland, Ohio, USA.
² Department of Quantitative Health Sciences, Lerner Research Institute, Cleveland Clinic Foundation, Cleveland, Ohio, USA.
³ Department of Physical Medicine and Rehabilitation, Neurological Institute, Cleveland Clinic Foundation, Cleveland, Ohio, USA.

PMID: 38676469
DOI: 10.1002/pmrj.13157

Abstract

Introduction: Patient expectations and baseline health are important drivers of outcomes following major genitourinary reconstructive surgery for neurogenic bladder (NGB). Differences in expectations and quality of life (QoL) improvements among different populations with NGB remain insufficiently explored in the literature.

Objective: To compare decisional regret (DR) and urinary-related QoL (UrQoL) in patients undergoing urinary diversion for NGB arising from spinal cord injury of acquired (A-SCI) and congenital (C-SCI) etiologies. We hypothesize that patients with A-SCI have higher expectations of improvement in QoL following surgery when compared with C-SCI, which may lead to higher DR and decreased UrQoL, postoperatively.

Design: In this cross-sectional survey study, we compared A-SCI to C-SCI in terms of DR, UrQoL, and postoperative changes in self-reported physical health, mental health, and pain using validated patient-reported outcome measures.

Setting: Participants were enrolled from a quaternary care institution via mail and MyChart.

Participants: The A-SCI group consistied of 17 patients with traumatic spinal cord injury the C-SCI group was composed of 20 patients with spina bifida.

Interventions: Not applicable.

Main outcome measures: The Decisional Regret Scale, Short form- Qualiveen (SF-Qualiveen), and Patient-reported outcomes measurement Information system-10 (PROMIS-10) Global Health surveys.

Results: The A-SCI group displayed poorer preoperative physical health than the C-SCI cohort, but absolute postoperative changes in this score, along with mental health score and pain level, were not significant after adjusting for baseline scores and follow-up time. SF-Qualiveen scores revealed significantly worse impact of NGB in UrQoL for A-SCI than for C-SCI when adjusted for other factors. No differences in DR were seen between the groups.

Conclusions: Patients with A-SCI demonstrate lower self-reported baseline physical health compared with patients with C-SCI, which may have implications in setting patient expectations when undergoing urinary diversion. In this small cohort, we found a milder self-reported postoperative impact of NGB in UrQoL in patients with C-SCI.