Needs, priorities, and attitudes of individuals with spinal cord injury toward nerve stimulation devices for bladder and bowel function: a survey

Abstract

Study design: Survey.

Objectives: To investigate the needs and priorities of people with spinal cord injury for managing neurogenic bladder and bowel function and to determine their willingness to adopt neuromodulation interventions for these functions.

Methods: Anonymous online survey. It was advertised by word-of-mouth by community influencers and social media, and by advertisement in newsletters of advocacy groups.

Results: Responses from 370 individuals (27% female, 73% male) were included. Bladder emptying without catheters was the top priority for restoring bladder function, and maintaining fecal continence was the top priority for restoring bowel function. The biggest concerns regarding external stimulation systems were wearing a device with wires connecting to electrodes on the skin and having to don and doff the system daily as needed. The biggest concerns for implanted systems were the chances of experiencing problems with the implant that required a revision surgery or surgical removal of the whole system. Respondents were willing to accept an external (61%) or implanted (41%) device to achieve improved bladder or bowel function.

Conclusions: Bladder and bowel dysfunction remain important unmet challenges for individuals living with SCI who answered our survey. These individuals are willing to accept some potential risks of nerve stimulation approaches given potential benefits. Additional consumer input is critical for guiding both research and translation to clinical use and personalized medicine.

Figure 1:

(A: Inconveniences from bladder management). Respondents rated interference from bladder management on everyday activities on a scale from 1 to 7, where 1 represents “no interference” and 7 represents “complete interference”. Respondents reported that their bladder interfered with daily routines with an average score of 4.3, with social activities at 4.0, and with education, volunteering, and employment activities at 3.9. (B: Bladder function priorities). Respondents responded to a forced-choice rank of 6 potential improvements in bladder function. For each bladder function priority, the distribution of the rank scores that it received are shown.

Figure 2:

(A: Inconveniences from bowel management). Respondents rated interference from bowel management on everyday activities on a scale from 1 to 7, where 1 represents “no interference” and 7 represents “complete interference”. Approximately 70% of respondents found that their bowel somewhat interfered with these activities. (B: Bowel function priorities). Respondents responded to a forced-choice rank of 7 potential improvements in bowel function. For each bowel function priority, the distribution of the rank scores that it received are shown.

Figure 3:

Likelihood of accepting implanted or external neurostimulation systems. For each potential benefit, respondents rated their likelihood of adopting an implanted system (A) or an external system (B) on a scale from 1 to 7, with 1 being “very likely” and 7 being “not likely”. They provided this rating for each of 7 potential functional benefits, including helping to empty their bladder without catheters; improving urinary continence; improving duration and predictability of the bowel routine; improving fecal continence; increasing independence in managing bladder or bowel function; reducing the need for medications; and reducing medical complications associated with managing bladder or bowel function. Respondents rated their likelihood of accepting external or implanted devices consistently the same for these potential benefits, therefore, these scores were averaged across those 7 potential benefits. Ranked concerns associated with implanted and external neurostimulation systems. For each potential risk, respondents made a forced rank choice, from most to least concerning, for potential risks associated with implanted systems (C) and external systems (D).