Abstract
Bowel dysfunction remains a prominent priority in the rehabilitation of patients with spinal cord injuries (SCIs). However, our understanding of the factors that influence bowel-related quality of life (QoL) in this population remains limited. This study aimed to investigate the potential role of resilience, defined as an individual's capacity to cope with and adapt to adversity, as a predictor of bowel-related QoL among the patients with SCI. A cohort of adult patients with SCI who received bowel and bladder care at an outpatient clinic within a large rehabilitation hospital was identified through a prospectively collected database. Resilience was measured using the Spinal Cord Injury-Quality of Life (SCI-QOL) Resilience Short Form, whereas bowel QoL was assessed using the Irritable Bowel Syndrome-Quality of Life (IBS-QoL) questionnaire. Univariate and multivariate regression analyses were employed to identify predictors of bowel-related QoL. The examined variables included age, gender, level and completeness of injury, time since injury, hand function, resilience, and the severity of bowel dysfunction as measured using the Neurogenic Bowel Dysfunction Score (NBDS). A total of 73 patients participated in this study, with a mean age of 44.01 ± 13.43 years and comprising mostly men (n = 57, 78%). The results revealed a significant correlation between resilience scores and the total score of IBS-QoL (ρ = -0.47, p < 0.0001). The multivariate analysis demonstrated that both resilience and the severity of bowel dysfunction were significant independent predictors of bowel-related QoL, with resilience demonstrating a stronger association. Overall, this study elucidates the importance of resilience in shaping patients' perceptions of their bowel health within the SCI population. In addition to the more expected determinants of bowel-related QoL, such as the severity of bowel dysfunction, resilience emerged as a notable factor. Accordingly, integrating interventions that enhance resilience within bowel rehabilitation programs may yield improvements in patients' perceived bowel health beyond the benefits achievable through bowel function enhancement alone.
Introduction
Spinal cord injury (SCI) can lead to dysfunction in multiple organ systems. Loss of bowel control represents one of the most significant challenges faced by individuals with SCI. 1 Patients with SCI commonly become dependent on bowel regimens, which may be extremely time consuming, involve manual stool disimpaction or digital rectal stimulation, and are often not fully effective for preventing constipation and bowel incontinence. As a result, bowel dysfunction remains a top rehabilitation priority for SCI patients and can lead to a significant deterioration in quality of life (QoL). 2 Improving bowel function by reducing incontinence episodes or eliminating autonomic dysreflexia that occurs during bowel programs is one way to improve bowel-related QoL. However, other determinants of bowel-related QoL are less obvious. Modifiable patient factors that can lessen the impact of neurogenic bowel on life satisfaction are not well established.
Resilience is a psychometric construct that measures one's ability to cope with and respond to adversity. Given the life-altering nature of SCI, resilience has become an important concept in understanding post-injury recovery and life satisfaction. 3 Previous studies have associated high resilience in SCI patients with fewer hospital admissions, reduced pain, and a decrease in overall psychosocial complications. 4 Although some individuals may be more resilient than others at baseline, this trait can be modified and honed. 5
Here we sought to examine the hypothesis that resilience is a predictor of bowel-related QoL and mediates the impact of bowel dysfunction among individuals with SCI. By elucidating this role, the present study may inform the development of targeted interventions and support strategies designed to promote resilience and ultimately improve the well-being of individuals living with SCI.
Methods
Protocol
After obtaining approval from the institutional review board, patients with SCIs were identified using a prospectively collected database of patients who received bowel and bladder care at the outpatient clinic of a large rehabilitation hospital. The specific enrollment criteria were as follows: Being ≥18 years of age History of SCI Time since injury >3 months
Other characteristics, such as the spinal level and severity of injury (complete vs. incomplete), were purposefully omitted from the enrollment criteria to enhance the generalizability of the study findings and enable the use of such variables as possible predictors of IBS-QoL.
Patient-reported measures
Spinal Cord Injury-Quality of Life (SCI-QOL) Resilience Short Form
The Spinal Cord Injury-Quality of life (SCI-QOL) Resilience Short Form is a self-reported questionnaire consisting of eight items that address different aspects of resilience, such as self-efficacy, optimism, social support, and perceived control over life. 5 It is rated using a Likert-type scale, with response options ranging from 1 (Never) to 5 (Always). Raw sum scores are converted to a standardized t score metric that was provided by the developers. A higher score indicates that the individual exhibits a higher level of resilience. 6 Version 1.0 of the item bank was used.
Irritable Bowel Syndrome-Quality of Life (IBS-QoL)
The IBS-QoL questionnaire is a domain-specific tool developed to assess the impact of bowel symptoms on QoL in patients with irritable bowel syndrome. It comprises 34 items covering eight principal domains: dysphoria, interference with activity, health worry, body image, food avoidance, social reaction, sexual function, and relationships. 7 Each item uses a Likert scale, with response options ranging from 1 (best) to 5 (worst). Although developed for patients with IBS, the questions on the IBS-QOL do not reference any specific disease. As a result, the questionnaire has been validated in other conditions that result in bowel dysfunction, including SCI. 8,9
Neurogenic Bowel Dysfunction Score (NBDS)
The NBDS is composed of 10 questions and classifies the severity of bowel dysfunction into four categories: severe (≥ 14 points), moderate (10–13 points), minor (7–9 points) and very minor (0–6 points), by assessing SCI-specific aspects of bowel dysfunction, such as autonomic dysreflexia during bowel movements and the duration of bowel regimen. 10,11
Potential predictors of bowel-related QoL
Given the paucity of data on predictors of bowel-related QoL in individuals with SCI, we incorporated potential predictors of overall QoL that were identified through a literature review. 12 –16 Those included age, gender, level and completeness of injury, time since injury, and hand function. In addition, we used the NBDS to account for the potential impact of the severity of bowel dysfunction, as well as the SCI-QoL Resilience Short Form in accordance with the main study hypothesis/objective.
Statistical analysis
Data abstraction and statistical analysis were performed using JMP PRO-16 (SAS Institute Inc., NC, USA). Categorical variables were described using counts, rates, and percentages, whereas continuous variables were presented using either mean and standard deviation or median and interquartile range (IQR) depending on the distribution of the data. Correlations were analyzed and reported using the Spearman's rank correlation coefficient (ρ). To identify the independent predictors of bowel-related QoL, we utilized the univariate and multivariate regression analysis using the predictive modeling platform of JMP PRO 16. For the purpose of this analysis, the scores for NBDS items (except the supplementary Item related to satisfaction with bowel function) were dichotomized, with the highest score of each item designated as “severe,” and all other score options combined as “mild to moderate.” Using a purposeful selection approach and a commonly used p value threshold, variables with a p value of <0.25 in the univariate analysis were entered in the multivariate models. Considering that the NBDS items constitute its total score, two separate models were analyzed to avoid overlapping variables. One model included the total NBDS score, whereas the other model included only the NBDS items that met the inclusion p value threshold. All other variables were consistent across both models.
Results
Characteristics of study participants
A total of 73 patients participated in the study, with the majority being men (n = 57, 78%) with a mean age of 44.01 ± 13.43 years. The average time since injury was 15.6 ± 13.5 years, with the majority of patients sustaining a thoracic/lumbar level of injury (n = 48, 67%).
Patient-reported outcomes
The distribution of the scores for the three main patient-reported outcome measures assessed in the study were as follows: the median NBDS total score was 37.5 (IQR: 28.51–44.44), the median IBS-QoL total score was 12.88 (IQR: 4.54–30.80), and the median SCI-QoL Resilience SF t score was 52.1 (IQR: 45.50–64.05).
Correlations among resilience, bowel dysfunction, and bowel-related QoL
Our analysis revealed a significant correlation between the IBS-QoL total score and both the Resilience SF T-score (ρ = -0.47, p < 0.0001) and the NBDS total score (ρ = 0.32, p = 0.0047). However, the correlation between the NBDS total score and the Resilience SF t score did not reach statistical significance (ρ = -0.22, p = 0.0644)
Predictors of bowel-related QoL
Using the univariate analysis, we identified five predictors of bowel-related QoL (Table 1), as follows:
Univariate Analysis for Screening the Study Variables to Identify the Potential Predictors of Bowel-Related Quality of Life After Spinal Cord Injury
Variables with a p value of <0.25 that were included in the multivariate analysis.
Statistically significant variables that were included in the multivariate analysis.
NBDS, Neurogenic Bowel Dysfunction Score; SCI-QoL, Spinal Cord Injury Quality of Life.
NBDS item related to autonomic dysreflexia (p < 0.0001)
NBDS item related to flatal incontinence (p = 0.0408)
NBDS supplementary Item related to the general bowel satisfaction (p = 0.0136)
NBDS Total Score (p = 0.0105)
SCI-QoL Resilience SF total score (p = 0.0020)
A multivariate regression analysis was then conducted to determine predictors of bowel-related QoL using variables with p values <0.25 in the univariate analysis (Table 2). The first model included nine variables, excluding the NBDS Total Score. The overall model was statistically significant (R 2 : 0.40, F ratio: 3.689 p = 0.0014) and only found Resilience SF T-score to be an independent predictor of bowel-related QoL (p = 0.009). The second model, which included the NBDS Total Score instead of the individual NBDS items was also found to be statistically significant (R 2 : 0.23, F ratio: 5.04, p = 0.001). This model yielded both the Resilience SF T-score and the NBDS Total Score as being significant and independent predictors of bowel-related QoL (p values: 0.005 and 0.012, respectively).
Multivariate Analysis of the Potential Predictors of Bowel-Related Quality of Life After Spinal Cord Injury
Multivariate analysis model 1 included all relevant variables except NBDS Total Score.
Multivariate analysis model 2 included all relevant variables except individual NBDS Items.
Statistically significant (p < 0.05)
NBDS, Neurogenic Bowel Dysfunction Score; SCI-QoL, Spinal Cord Injury Quality of Life.
Discussion
Bowel dysfunction is a prominent sequela of SCI and is commonly ranked as a top rehabilitation priority in this population. 2 Effective bowel management is an important part of day-to-day living for patients with SCI, yet the perceived impact of bowel dysfunction on their QoL remains understudied. Specifically, determinants of bowel-related QoL are poorly understood. To address this knowledge gap, we conducted the present study to examine the relationship between bowel-related QoL and several potential determining factors, including the severity of bowel dysfunction, resilience, and common predictors of general QoL. Our findings support our hypothesis that resilience is a significant independent predictor of bowel QoL among SCI patients.
As there are currently no widely adopted measures of bowel-related QoL after SCI, we previously conducted a validation study of the IBS-QoL questionnaire, which demonstrated its face, construct, and content validity in this population. 9 This questionnaire addresses eight domains of bowel-related QoL in aspects ranging from dysphoria to food avoidance. In the present study, we utilized this instrument to identify predictors of bowel-related QoL after SCI.
Among the various characteristics assessed in this study, we found that resilience, rather than injury characteristics, was the strongest predictor of bowel-related QoL. Parameters such as the level and completeness of injury, and even hand function were not significantly associated with bowel-related QoL on either univariate or multivariate analysis. This finding came as a surprise, because all of these parameters are important correlates of overall QoL in SCI and are associated with increased dependence on caregivers to perform a bodily function that is ingrained from childhood to be deeply private and often taboo.
Resilience is a personality or behavioral trait that reflects one's ability to cope with adversity and has been studied as a concept to explain positive outcomes in numerous disciplines, including rehabilitation medicine. 17 Resilience has been associated with several positive outcomes following SCI, such as decreased pain interference, healthcare costs, and length of hospital stays, and better long-term health. 3,18 Although the direct relationship between resilience and bowel-related QoL may not be readily apparent, it likely reflects the ability to both accept and adapt to a sudden and profound change in bodily function. Therefore, when considering two patients with the same level of upper extremity or trunk control, their subjective perceptions of how bowel dysfunction affects various domains of their lives may differ significantly.
Although the severity of bowel dysfunction is associated with bowel-related QoL, it appears that they are distinct aspects of SCI patients' lives. Bowel function can be improved by reducing the incidence of autonomic dysreflexia during bowel movements or decreasing the time spent during the bowel regimen. However, addressing these parameters may not be the only mechanism to improve patients' perspective of bowel-related QoL. Indeed, we found that resilience is a stronger predictor of how patients perceive the effect of neurogenic bowel on QoL than the severity of bowel dysfunction as measured by the NBDS. This relationship held true for both multivariate models that we present here. Several components of the NBDS were individually associated with the IBS-QoL (e.g., flatal incontinence or the frequency of dysreflexia during bowel movements). However, these components were eliminated as independent predictors when combined with resilience in a multivariate model, likely because each component individually does not provide enough information to reflect bowel-related QoL, although they collectively do, as demonstrated by the significant association between the NBDS total score and IBS-QoL. Despite the latter finding, the severity of bowel dysfunction was secondary to resilience in the strength of its association with IBS-QoL.
As a result, we suggest that resilience should be addressed when assessing bowel dysfunction and bowel-related QoL in SCI patients. Although resilience may be an innate character trait, there is also evidence that it is modifiable. 19,20 Techniques such as psychotherapy, engagement in physical activity, and maintaining social connections can all augment resilience. 21 –24 Emphasis on strengthening resilience during and after post-injury rehabilitation will likely improve patients' perception of bowel health beyond what is possible with improving bowel function alone. A multidisciplinary team involving peer mentors, mental health professionals, and colorectal/pelvic floor specialists may therefore offer an optimal approach to the management of bowel function, leading to improvements in bowel-related QoL after SCI.
Despite being developed as a concept more than a half-century ago, resilience is a relatively novel concept in SCI rehabilitation. Nevertheless, its importance in determining various health and QoL outcomes is becoming more apparent. 4 The SCI-QoL Resilience scale used in the present study was developed specifically for the SCI population and takes into account concepts such as coping with injury and overcoming limitations imposed by the SCI. As a result, this instrument is likely superior to more generic measures of resilience that were developed for the general population. Although the IBS-QoL was not originally developed for SCI patients, our previous validation study confirmed its relevance and acceptance among our care providers and patient population. At the same time, the present study has important limitations despite its original findings. The cohort is relatively small and homogeneous in terms of injury duration and level, and may not be demographically representative of the overall SCI population. As with any cross-sectional study, it is important to note that the relationships identified here represent correlation and not causation. Finally, although we controlled for multiple variables, it is possible that additional predictors of bowel-related QoL exist that were not accounted for in the present study.
Conclusions
Bowel-related QoL is an important aspect of patients' lives following SCI. Here we demonstrate that resilience may be an important factor in shaping patients' perception of their bowel health, in addition to the more predictable determinants of bowel-related QoL such as the severity of bowel dysfunction. The significant correlation between the bowel QoL and both the resilience and bowel dysfunction scores emphasizes the complex interplay between these factors in shaping patients' experiences. Unlike some other character traits, resilience can be strengthened and improved by various approaches. The correlative nature of the present study merits follow-up research to address the impact of resilience on bowel-related QoL in a prospective controlled approach.
Transparency, Rigor, and Reproducibility Summary
The study did not meet the National Institute of Health definition of an applicable clinical trial, and pre-registration at
Footnotes
Acknowledgments
We express our sincere appreciation and gratitude to all of our patients at Rancho Los Amigos National Rehabilitation Center for their invaluable participation in our study. We also thank Dr. David Tulsky and Chloe DeHart for providing the SCI-QoL Resilience SF V1.0 item bank and scoring sheet.
Authors' Contributions
All authors were responsible for methodology, writing, and editing; E.K. was responsible for conceptualizing, supervision, methodology, writing, and editing; A.A. was responsible for conceptualizing, supervision, methodology, data collection, statistical analysis, writing, and editing; S.M., L.M.O., P.G., P.K., and A.A. were responsible for data collection, writing and editing; D.G. was responsible for supervision, writing, and editing. All authors critically reviewed the content and approved the final version of the manuscript for submission.
Ethics of Approval Statement
This study was approved by the Institutional Review Board of Rancho Los Amigos National Rehabilitation Center.
Funding Information
No funding was received for this study.
Author Disclosure Statement
No competing financial interests exist.
