Introduction: People with neurogenic bladder and/or bowel dysfunction experience a range of challenges that cannot be captured using standardized outcomes. Individualized measures are well designed to capture the heterogeneity of the persons’ experiences with various treatments and devices. Goal Attainment Scaling (GAS) is an individualized, patient-reported outcome measure allowing people to identify and track their own treatment goals. However, it can be cumbersome to facilitate. The aim of this project was to develop a goal menu specific to people with neurogenic bladder and/or bowel dysfunction to make GAS more feasible in clinical trials.

Methods: To elicit concepts for the draft goal menu, a face-to-face facilitated workshop was conducted with six international clinicians with expertise in neurogenic bladder and bowel dysfunction. In the next phase, twelve people with neurogenic bladder and bowel dysfunction were recruited from the US and UK for individual semi-structured interviews. In addition, two international clinician panels were conducted by teleconference to review the menu’s comprehensiveness. Workshop, panels, and interviews were recorded and transcribed verbatim. Participants were first asked to describe their most common challenges in an open-ended discussion, and then to react to the draft goal menu. Each patient reviewed 5-10 goal areas to assess for the clarity, comprehensibility, and relevance of menu items. Participant responses were systematically coded by three researchers. Feedback on menu items was coded as “clear/keep”, “unclear/modify”, “remove/disliked”, or “add/missing”. A thematic analysis was performed, which began with two researchers independently reviewing interview transcripts to familiarize themselves with the data. Quotes were then indexed and charted to emergent themes to evaluate completeness of items and data saturation. Quantitative (demographic and clinical) features were summarized as medians, means ± standard deviations, or proportions.

Results: The median age of the twelve participants interviewed was 36 (range 25-58, SD 9) years and participants were more often female (7/12, 58%). Most participants had a spinal cord injury as the cause of their neurogenic bladder/bowel (9/12, 75%), followed by spina bifida (2/12, 17%) and other (1/12, 8%). We created a menu of 24 goal areas each with 6-31 descriptors (297 total). Based on participant feedback and clinician review, three goal areas were added (accessibility, diarrhea, urinary management) and two were removed (flatulence, urethral strictures). Of the 297 descriptors, patients endorsed 227 (76%). Those that were not endorsed were modified (23/297, 8%) or removed (47/297, 16%). A further 35 descriptors were added to include concepts identified in the participant and clinician reviews that had not otherwise been specified. The final menu contained 25 goal areas, each with 6-31 descriptors (280 total).

Conclusions: A goal menu for neurogenic bladder and/or bowel was created to capture the patient’s voice in outcome measurement. By involving both clinician and participant input in early phase development of a patient-reported outcome measure, we have been able to demonstrate both content validation and clinical meaningfulness.

Introduction: Literature highlighted that most of Indian SCI individuals were poor villagers and illiterate and indicates a vibrant view of lack of SCI awareness, scarcity of spinal units and a dearth of trained SCI medical and paramedical staff across the country.
Objective: We aimed to evaluate the feasibility and acceptance of telesci protocol using common technologies as an outreach service delivery model in India.
Design: Pre and Post quasi-experimental
Methodology: A total of 89 SCI individuals were contacted after discharge from the hospital. Semi-structured telephonic interview was organized. Open-ended interviews were taken on the common issues or queries faced by the SCI during their aftercare. In addition, questions on the following sub-components of Spinal Cord Outreach Service Health Questionnaire (SOS-HQ) including bladder, skin care, muscular, functional outcome and exercises were administered, post-discharge 3 weeks followed by 8 weeks. Based on the queries, Telesci protocol was given twice a week till 8 weeks as per the preferred mode of consultation. Educational videos on personal and hygiene care were also provided. Image or video-based home assessments & recommendations were also provided.
Qualitative findings were generated and analysed along with the feedback on using telesci protocol. The feedback scale comprised of 8 questions on ease, good means, functional considerations, network accessibility, technical clarity, prevention, saving, and telesci in usual care.
Results: Out of 89 SCI individuals, 63 individuals (n=37 males, 26 females) responded. The age ranged from 16-30 years participated in the interview. Majority of them were from the level T1-S5 (n=33) followed by C5-C8 and C1-C4. Most of the participants had an injury between 1 to 5 years (82.53%). 22 participants educated up to 8th grade, 9 participants (10th standard), 13 participants (class 12th standard), 18 participants had a bachelor degree and 1 participant had a master degree.
The most common follow-up concerns or queries raised by more than 80% of participants on exercise progression (95.23%), use of electrical stimulation (90.47%) and stress relieving techniques (82.53%). 60-80% of participants reported problems and queries related to spasticity (71.42%), shoulder pain (76.19%), skin care (79.36%), community integration that includes employment, leisure & entertainment activities, sports activities and procedure for getting disability certificate (77.77%). 68.25% participants asked about the implementation or development of new SCI rehabilitation advances and 61.9% enquired for the provision of guidance and support to their local therapist. 50.79% participants queried about the provision of continuous exercise monitoring, information on positioning & handling (53.96%), equipment & devices purchase (41.26%) and home modification suggestions (33.33%). At post discharge 8 weeks, mentioned queries and difficulties were reduced and the mean annual incidence of re-hospitalization days was 2.15 ±1 at the start of the study, as recalled by the participants and 1.16 ± 0.53 after the provision of continuous supervised follow-up of 1 year. 90% of the participants suggested to include the telesci protocol in usual care as appropriate.
Conclusion: Telesci home-based interventions can be designed and may be expanded into the realm of comprehensive SCI management especially in a resource-limited environment.

Introduction:

Complementary and integrative healthcare (CIH) is an all-encompassing term that includes complementary medicine (used together with conventional medicine), alternative medicine (used in place of conventional medicine), and integrative medicine (using both complementary and alternative approaches with conventional medicine). Limited research has been done regarding CIH use in people with spinal cord injury (SCI). With the increasing trend of CIH use in US adults and a high proportion of patient-directed self-treatment using alternatives to conventional medicine, especially the use of opioids to treat pain, it is critical to understand the scope of CIH use in order to improve medical care and long-term outcomes after SCI. The purpose of this study was to characterize CIH use and barriers to use in a national sample of people with SCI.

Methods:

This study design was cross-sectional self-report by telephone interview or online survey. After receiving Institutional Review Board approval at each respective site, participants from five SCI Model Systems sites participating in a longitudinal research program completed a CIH Survey that was administered concurrently with the participants’ follow-up interviews. The CIH survey included detailed questions on current and past CIH use and barriers to use. Data were analyzed using frequency counts and proportions.

Results:

A total of 147 participants with SCI had completed the survey at the time of this abstract. Half had used CIH before their SCI, 71.4% are currently using CIH, and 45.6% are not currently using any CIH but have used or tried some form of CIH since their SCI. Only 12.9% have not used or tried any CIH since their injury; the majority reported that they don't need it and 26.3% reported they didn't know what options were available.

Products (eg, herbs and supplements) account for 67.0% of all CIH currently being used, with practices (eg, yoga and massage) accounting for 33.0%. The most frequently used CIH are vitamins/multivitamins (62.0%), followed by some form of cannabis (33.0%), massage therapy (28.0%), mineral/multimineral supplements (28.0%), herbal supplements (18.0%), cranberry supplements (17%), and fish oil supplements (10.0%).

CIH was used for both general health and wellness as well as for specific health reasons/conditions; pain relief was the most common reason cited for using CIH. Other specific indications for CIH use included fatigue and low energy, wound healing and infection prevention, bone health, anxiety, spasticity, relaxation, sleep, stress management, and bowel and bladder function. Data collection will be complete in June 2019.

Conclusions:

People with SCI are using and trying a wide range of CIH, with most using and trying CIH to treat pain. This speaks to a need and desire for alternatives to pharmacologic modalities and provides evidence to inform the development of efficacy trials of CIH in the SCI population. The results also speak to an important need for providers to maintain an open dialog about CIH use with their patients with SCI both for safety purposes and to ensure people with SCI are informed consumers of their health.

Introduction
The Paraplegie Community – www.community.paraplegie.ch – is an online community for people with spinal cord injury (SCI), their relatives and friends. It aims to engage with people around SCI to foster the exchange and the production of knowledge based on the lived experience while ensuring the provision of health information of quality. The Paraplegie Community was launched in June 2017 by the Swiss Paraplegic Group (Switzerland), a health organization supporting individuals with SCI in their rehabilitation and for the rest of their life. The objective of this study is twofold: 1) to examine what content users are most interested in and 2) to describe the challenges that the health organization is encountering in building the community.

Methods
A content analysis to identify the topics in which users are most interested in was performed and will be updated to cover the period between June 2017-2019. Moreover, based on recognized guidelines for building online communities, the authors will present their reflections on the challenges encountered in the field of SCI in the Swiss context.

Results
The preliminary results show that the Paraplegie Community is growing successfully: it has over 10,000 visitors per month and more than 2,500 contributions overall, with an average of 100 posts per month. The most viewed topics in the Wiki are bowel and bladder management, whereas the most discussed topics in the forum are related to assistive devices followed by mobility and accessibility. Moreover, users seem to appreciate the opportunity of asking questions related to personal health matters to health professionals (HPs) online.
The major challenge that the health organization has faced in building the online community consists in attracting and retaining new users considering the wide offer of websites and social media available. Creating a personal bound and a relationship of trust that goes beyond the online exchange is successful in retaining and motivating the (super)users. However, it requires a 24/7 service. Besides, the multilingual Swiss context multiplies the efforts for content development and community building. A further challenge is to have the commitment of different HPs over time to create content and interact with the users in the dedicated section. Lastly, finding the balance between privacy and visibility and between gamification and seriousness can be challenging.

Conclusions
As health information of quality contributes to health literacy and informed decision-making, the interactions with the Paraplegie Community hold the potential of improving the users’ self-management skills (e.g., in dealing with frequent complications in the field of bowel and bladder management).
Moreover, by monitoring the most viewed and discussed topics, it is possible to target new content to the needs and interests of the users. However, this responsiveness requires a considerable investment in resources by health organizations, which need a community manager, moderators as well as a team of HPs to develop content and answer specific questions. To enhance the commitment of the HPs, it might be important to offer official recognition of the work that they perform for the online community.

Introduction: Physical activity (PA) is associated with health, well-being, functioning, and longevity. The onset of spinal cord injury (SCI) inevitably impacts PA. Previous research in people with SCI who used a wheelchair for their everyday mobility showed that PA levels increase during initial inpatient rehabilitation, but decline shortly after discharge. Patterns of change of PA among ambulatory people with SCI are unknown. The aim of this study was to evaluate changes in daily PA and associated factors among ambulatory people with SCI during the first year after inpatient rehabilitation.

Methods: Daily PA level (time spent on walking, cycling, running, and active wheeling) was objectively measured with one (leg, for people who didn’t use a manual wheelchair), or a combination of two (leg and wheel, for those who used a manual wheelchair for some of their activities) accelerometer-based sensors at three time-points: shortly before discharge of inpatient rehabilitation, and at 6 months and 1 year after discharge. Sex, age, level and completeness of injury, time since injury, cause of injury, and ambulatory status at discharge were measured as potential associated factors. Ambulatory status was self-assigned to one of four categories modified from the Hoffer functional ambulation scale: exercise ambulator (walks only during therapy), household ambulator (walks indoors; use of wheelchair is necessary for all activities outdoors), community ambulator (walks independently outdoors with or without assistive devices; use of wheelchair only necessary for long distances), and normal ambulator (walks outdoors without assistive devices; no use of wheelchair). Generalized estimating equation analysis was used to study changes over time and associations.

Results: Forty-seven people were included. At discharge, mean (SD) age was 55 (13) years, 53% were male, 49% had tetraplegia, 94% had AIS D, and in 47% the cause was traumatic. Nineteen percent of people were exercise ambulators, 30% household, 38% community, and 13% normal ambulators.
On average, daily PA level increased with 21 min/day (95% CI: 6.8 – 35.0, p=.004) during the first half year after inpatient rehabilitation; there was no significant change during the second half year (95% CI: -8.1 – 17.4 min/day, p=.473). The increase in daily PA level was the result of an almost doubling of walking duration, while the time spent on wheeling decreased. Older age (beta: -1.2, 95% CI: -2.1 - -0.3, p=.006) and low (exercise or household) ambulatory status (beta: -38.2, 95% CI: -53.9 - -12.4, p=.002) were significantly associated with lower PA level.

Conclusions: Overall, daily PA levels in ambulatory people with SCI changed favorably in the first half year after inpatient rehabilitation and remained stable in the second half year. One should, however, realize, that variation was large and several individuals remained inactive. Older age and low ambulatory status at discharge explained part of these unfavorable PA levels.

Introduction
Adopting evidence-based practice is a priority for clinicians working within rehabilitation settings. However, within the field of pediatric disability, the evidence base is limited. The issue arises from the challenge in measuring the efficacy of complex interventions required for specialized populations such as pediatric spinal cord injury. Therefore, practice guidance in the form of clinical practice guidelines and systematic reviews seldom exists. Given the state of the evidence, clinicians must often rely on their own clinical expertise and disperse evidence to inform their practice, which often leads to feelings of unease and a lack of confidence. To address this gap, the pediatric rehabilitation spinal cord injury (SCI) taskforce at Holland Bloorview Kids Rehabilitation Hospital explored opportunities to develop best practices in pediatric spinal cord injury management. The priority was to build the expertise of the interdisciplinary team and increase access to best practice in pediatric spinal cord injury care. As a result, the SCI-Kids-CAN curriculum - a monthly education series was developed by clinicians, family leaders and experts in pediatric SCI.

Methods
A survey-based need assessment was conducted to inform a curriculum that increases knowledge of best available evidence in pediatric SCI issues for clinicians who work with this population. The survey was disseminated via email to clinicians across inpatient, day program and outpatient settings. The needs assessment included a prioritized list of 10 topics from a list of over 100 that the taskforce had previously generated. Survey recipients were asked to choose the top three topics that they were interested in learning about. Furthermore, were asked to identify teaching and learning strategies that best meet their needs (e.g. case studies, power point slides, guest speakers). Demographic information was also collected.

Results
The needs assessment was completed by clinicians including physicians, occupational therapists, physiotherapists, and nurses. Clinicians represented inpatient, day program and outpatient settings. The following five topics were prioritized: 1. bowel and bladder dysfunction; 2. autonomic system dysfunction; 3. musculoskeletal complications; 4. neurological complications in SCI; and 5. new research in SCI. Additional topics of interest suggested included bone density, seating, and optimizing independence in everyday activities. Participants identified the need for a multi-modal approach to help foster their learning.

Conclusion
The SCI-Kids-CAN curriculum is a strategy to support front line clinicians with building knowledge and develop best practices in providing care for children with spinal cord injury. Each monthly session is 60 minutes long, scheduled to optimize attendance and delivered by clinical staff and external experts. Outcomes of the needs assessment were embedded into the SCI-KIDS-CAN curriculum to enhance the quality and delivery of pediatric SCI evidence that meets the needs of our clinicians. Enhancements that have been incorporated include: expanding from an in-person presentation delivery to offering online sessions; engaging clinicians as champions to deliver curriculum content; supporting clinicians with evidence-gathering and sharing for the curriculum; and creating guiding principles to inform the structure and delivery of content in alignment with learning objectives. An evaluation strategy is being developed to define the impact of this work.

Background/Objectives: Peer mentorship programs are an integral part of spinal cord injury (SCI) community-based organizations in Canada. Despite the emerging research in SCI peer mentorship, little empirical evidence exists in understanding the outcomes of SCI community-based peer mentorship programs. The purpose of this study was to explore the experiences and outcomes of community-based SCI peer mentorship programs across four Canadian community-based organizations.

Methods: This research was conducted in partnership with members of community-based SCI organizations and researchers. Community members and researchers co-constructed, co-implemented, and co-interpreted the study and its results. Using a qualitative research design, we interviewed 36 individuals to collect data on their experiences and thoughts around SCI peer mentorship and its outcomes. The participants provided their experiences from the perspective of either a peer mentee, peer mentor, staff of SCI community organizations, or family member of a peer mentee or mentor. All interviews were transcribed verbatim and analyzed using inductive thematic analysis, meaning the authors categorized the qualitative data by themes and sub-themes.

Results: Participants’ experiences with SCI peer mentorship were categorized in three broad themes: (1) SCI Peer Mentorship Program Structure, (2) Outcomes of Mentorship, (3) Mentor Mechanics. For “SCI Peer Mentorship Program Structure”, participants described the various processes and types of peer mentorship (e.g., formal and informal; criteria for peer matching), and organizational structures (e.g., roles of staff, community building and collaborations). For “Outcomes of Mentorship”, participants outlined positive and negative outcomes specific for mentees and mentors as well as reciprocal outcomes. Mentees felt a greater sense of belonging, felt more independent, had greater self-worth and hope, along with reductions in feelings of isolation. Mentors perceived benefits such as being a role model and advocate for the SCI community, an increased sense of personal growth, satisfaction, and confidence, and value being able to help others. Reciprocally, mentors and mentees felt a collective benefit from their relationship and a shared learning about living with SCI. However, a lack of connection between mentor-mentee, the emotional toll on mentors, and the lack of support for family were discussed as negative outcomes/experiences. For “Mentor Mechanics”, mentors were described as being open, positive and professional. Additionally, individualizing mentorship, providing experiential learning opportunities, and assisting in maintaining agency were identified as key roles of mentors.

Conclusions: This study provided an in-depth understanding of the experiences and outcomes related to community-based SCI peer mentorship by obtaining perspectives of multiple stakeholders. These findings will inform the next phases of this community-university partnership, which is to co-develop a community-based SCI peer mentorship evaluation tool.