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

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.

Marital status, marital transitions, well-being, and spinal cord injury: an examination of the effects of sex and time.

OBJECTIVE: To examine the applicability of marital resource (marriage has substantial benefits for well-being over not being married) or marital crisis (marital dissolution leads to poorer well-being) models to the spinal cord injury (SCI) population by studying the effects of sex, marital status, and marital transitions on well-being. DESIGN: Prospective cohort study from the SCI Model Systems National Database. SETTING: Community. PARTICIPANTS: Men (n=4864) and women (n=1277) who sustained traumatic SCI and completed a minimum of 1 follow-up interview beginning at 1 year through 15 years postinjury. INTERVENTIONS: None. MAIN OUTCOMES MEASURES: Life satisfaction, depressive symptoms, and self-perceived health status by using linear mixed models for longitudinal data. RESULTS: In general, well-being improved over time since injury. Hypothesis testing supported the marital crisis model, as marital loss through being or becoming separated or divorced and being or becoming widowed, had the most consistent and negative impact across well-being outcomes, whereas being or becoming married had an advantage for only lower depression symptoms over time. However, marital dissolution or loss did not have a uniformly adverse impact on well-being outcomes, and this effect often was moderated by sex, such that widows had higher depressive symptoms and poorer self-perceived health than widowers, but separated or divorced women had higher life satisfaction and self-perceived health than men. Irrespective of sex, being separated or divorced versus being single was associated with higher depressive symptoms over time. CONCLUSIONS: Results support the marital crisis model and that women and men can experience marital dissolution differently. All marital loss does not result in compromised well-being and all marriage does not enhance well-being, highlighting complex dynamics worthy of further investigation in this population.

The impact of Internet access for people with spinal cord injuries: a descriptive analysis of a pilot study.

PURPOSE: A pilot study was undertaken regarding the effect of Internet access on health-related quality of life (HRQoL) and self-reported impact for people with spinal cord injuries (SCI). This study is unique in providing free Internet access and looking at benefits for people with disabilities. METHOD: HRQoL was measured using indicators of global health and social isolation at baseline and after 6 to 19 months of use via telephone interviews on a convenience sample of 23 adults with SCI. Additionally, monthly telephone surveys measured usage patterns, recreation, and self-reported impact. Both quantitative and qualitative analyses were conducted. Bivariate tests for differences in proportions and paired T-tests were conducted. Qualitatively, conceptual categories of impact were created using the Constant Comparative Method. RESULTS: Qualitatively, the predominant benefit was quality of life, mentioned by 61% of participants 46% of months surveyed, with quantitative trends towards improved emotional health. Ease of access to information, social connection, and quality of information were also frequently reported, with modest support from quantitative data. CONCLUSIONS: The study's persuasive qualitative results suggest the Internet has particular benefit to people with disabilities and that rehabilitation goals should include leisure. Further scientific research is strongly warranted.

A pilot study of functional access to public buildings and facilities for persons with impairments.

PURPOSE: To compare functional access to public buildings and facilities for persons with and without impairments. METHOD: This is a cross-sectional pilot study with a survey design. A four-member participant team representing three impairment types: mobility impaired person using a wheelchair, mobility impaired person who was not a wheelchair user, visually impaired person, and a control with no known impairments, challenged a stratified random sample of 30 public buildings in Greater Boston. Using a task oriented data collection instrument, functional access was determined in terms of percentage of tasks performed, time, distance, barriers and facilitators. RESULTS: Overall, task performance was high for the team. However, the wheelchair user reported a lower task performance (81%) in comparison to the control (100%) and persons with mobility and visual impairments (97-98%). There was little variation in mean values for time and distance to complete tasks. More barriers were reported by the persons with mobility impairments, wheelchair user and non-wheelchair user, and; highest facilitators by the person with visual impairment and the wheelchair user. The control reported the lowest barriers and facilitators. The types of barriers and facilitators varied for the three impairments and the control structural for wheelchair and mobility impairments, wayfinding for visual impairment and interpersonal for control. CONCLUSIONS: Task performance by itself may not be a good predictor of functional access. Barriers and facilitators are critical to understanding issues related to functional access for persons with impairments. Knowledge of how these differ for different impairments can be useful for improving environmental access and rehabilitation.

A telerehabilitation intervention for persons with spinal cord dysfunction.

Pressure ulcers and depression are common preventable conditions secondary to a spinal cord dysfunction. However, few successful, low-cost preventive approaches have been identified. We have developed a dynamic automated telephone calling system, termed Care Call, to empower and motivate people with spinal cord dysfunction to improve their skin care, seek treatment for depression, and appropriately use the healthcare system. Herein, we describe the design and development of Care Call, its novel features, and promising preliminary results of our pilot testing. Voice quality testing showed that Care Call was able to understand all voice characteristics except very soft-spoken speech. Importantly, pilot study subjects felt Care Call could be particularly useful for people who are depressed, those with acute injury, and those without access to quality care. The results of a randomized controlled trial currently underway to evaluate Care Call will be available in 2011.