Patients with spinal cord injury (SCI) have a high prevalence of neurogenic bowel dysfunction. The Neurogenic Bowel Dysfunction Score (NBDS) is commonly used to measure the severity of bowel dysfunction and predict quality of life  (QOL) in SCI patients. However, there is no comprehensive instrument to assess bowel-specific QOL for SCI patients. Instead,The Irritable Bowel Syndrome-Quality of Life (IBS-QOL) is a comprehensive 34-question instrument evaluating the impact of bowel dysfunction on various domains of QOL.  This instrument measures the severity of bowel dysfunction in patients with SCI, with answers weighted to predict QOL.  We sought to assess the construct validity of the IBS-QOL questionnaire for use in the SCI population as no such comprehensive measure exists.

Patients with SCI were recruited from a national medical rehabilitation hospital.  Cognitively intact, adult SCI patients with >3 months elapsed from their injury were considered for inclusion. Patients completed the IBS-QOL and Neurogenic Bowel Dysfunction Score (NBDS) via either telephone interview or paper survey in the clinic. Patient demographics and medical history were obtained by chart review. Select items of the NBDS were dichotomized to identify subgroups of patients with severe bowel-related dysfunction.  Construct validity was assessed using the hypothesis testing method. A total of 11 hypotheses were generated and tested. We hypothesized that IBS-QOL would differentiate the sub-groups stratified based on the frequency of bowel movements; time spent on bowel emptying; uneasiness, sweating or headaches during bowel emptying; frequency of digital disimpaction; frequency of bowel incontinence; flatus incontinence; and the overall satisfaction with bowel function. On the other hand, we hypothesized that IBS-QOL would be comparable between subgroups stratified based on the use of medications to treat constipation; use of medications for bowel incontinence; regular use of drops for constipation; and presence of perianal issues.

One hundred and six patients responded.  Eighty-two (77%) were male and mean age was 45.3±13.6 years.  Majority of the patients had injuries at thoracolumbar levels (n = 74, 71.2%). The IBS-QOL demonstrated sufficient construct validity to discriminate the sub-groups of patients with severe bowel dysfunction in terms of uneasiness, sweating or headaches during bowel emptying (p=.0003), time spent on bowel emptying (p=0.0065), flatus incontinence (p=0.0076), and overall satisfaction with bowel function, although the differences related to the frequency of bowel accidents and perianal issues were not significant. Overall, the results were in accordance with the hypotheses in eight out of eleven (73%) comparisons.

We demonstrated the construct validity of IBS-QOL for assessment of bowel-related QOL in SCI.

This measure provides a comprehensive and domain-specific understanding of bowel-related QOL following SCI, although further studies are needed to assess its reliability, responsiveness, and generalizability across different patient populations.