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Oral Presentations: Peer Mentoring and Respiratory Issues

Track 2
Friday, September 4, 2020
11:00 AM - 12:30 PM
Auditorium - Track 2


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Dr Marnie Graco
Research And Translation Fellow
Alfred Health

Spinal cord injury rehabilitation centres can (and do) independently diagnose and treat non-complicated sleep-disordered breathing

11:00 AM - 11:15 AM


Introduction: Sleep disordered breathing (SDB) is highly prevalent and poorly recognized in people with tetraplegia and is associated with substantial neurocognitive impairment and reduced quality of life. Despite this, research has shown that less than 20% are diagnosed and treated. The usual management pathway involves referral from the primary care or rehabilitation doctor to a specialist sleep/respiratory physician for investigation and management. However, this care model often presents significant access barriers to people with tetraplegia. Previous research has identified three spinal cord injury (SCI) centres that routinely screen, diagnose and treat uncomplicated SDB without direct specialist sleep service involvement.

1) To describe the SDB management models of three SCI centres independently managing non-complicated SDB - including the organisation, staffing, patient population, infrastructure, and processes.
2) To determine the common elements of the three SDB management models.

Methods: Mixed methods descriptive study, including qualitative (direct observation and clinician interviews) and quantitative (retrospective audit of clinical practice) components. One week at each of the Swiss Paraplegic Centre (SPZ, Switzerland), Stan Cassidy Centre for Rehabilitation (SCCR, Canada) and Heliomare Rehabilitation Centre (HRC, The Netherlands) was spent observing and documenting the three models of SDB management. Following observation, process maps describing the management pathways were developed and verified by key clinical staff.

Results: SPZ is a 190-bed specialist SCI hospital, with >1200 inpatient admission per year (~100 new SCI/year). HRC and SCCR are general rehabilitation hospitals with specialised SCI services (HRC ~40 SCI beds & ~80 new SCI/year; SCCR ~10 SCI beds & ~30 new SCI/year). All three SCI centres had a small, highly skilled team dedicated to providing screening, diagnosis and treatment for SDB and other respiratory issues. At each centre the team was led by a rehabilitation doctor and supported by one or more ancillary staff (nurses or respiratory therapists) who performed the majority of the screening, diagnostic testing and treatment initiation under the supervision of the doctor. Routine screening orders for all SCI inpatient admissions included overnight oximetry and bedside spirometry (and transcutaneous CO2 at SPZ and HRC). Screening orders were usually followed by polygraphy (Level 3 sleep study) for those with a positive result. The decision on whether treatment was indicated, and the type of treatment, was made collaboratively by the doctor and nurse/therapist and based on test results, patient symptoms and patient wishes. Treatment initiation and titration was done on the rehabilitation unit. Equipment for diagnosis and treatment was owned by the hospital and/or provided by local vendors.

Conclusion: The teams delivering routine management of SDB in the three SCI centres were small, collaborative and highly skilled in respiratory management. Our findings demonstrate that is feasible for multi-disciplinary SCI rehabilitation teams to independently diagnose and treat un-complicated SDB without external referral, provided they are adequately resourced with equipment and skilled and motivated staff. Similar models of care could substantially improve access to SDB management for people with SCI. Prospective non-inferiority trials of these alternative models are urgently required to address the inequity of access to diagnosis and treatment.


Dr Graco is an emerging leader in the critical area of Implementation Science. She has a clinical background as a Physiotherapist (1999), a Master of Public Health (2004) and her PhD (2019) investigated the clinical management of obstructive sleep apnoea in people with tetraplegia. Dr Graco’s research aims to improve the health and quality of life of people with disability and health-related disadvantage by delivering care that is underpinned by the highest quality evidence. She works at Alfred Health (Melbourne) as Allied Health Research and Translation Lead, where her role is to build capacity for allied health clinicians and departments to undertake knowledge translation research.
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Dr Astri Ferdiana
University Of Mataram

Employment in Individuals with Long Standing Spinal Cord Injury in New South Wales, Australia

11:15 AM - 11:30 AM


Employment post-injury remains a challenge for individuals with spinal cord injury (SCI), including in a high-income country such as Australia. Previous study showed that the employment rate in this population ranged between 30 and 40%. This study aims to identify the employment rate after SCI in individuals living with SCI in New South Wales, Australia. Important determinants of employment were identified from a range of demographic, injury, clinical, and vocational factors.
Individuals with SCI aged 18-65 years old from two SCI associations in New South Wales were invited to participate in the study. A total of 1000 postal questionnaires were sent out, including a link to online survey. The questionnaire consisted of questions adopted from the International Labor Market Survey in Spinal Cord Injury (ILIAS), as well as the Spinal Cord Independence Measure (SCIM). Employment was defined as having a paid work including paid apprenticeship. Descriptive and logistic regression analysis were conducted using SPSS version 25.0.
Of 270 respondents participating in the survey, 224 respondents aged ≤65 years old were included in the analysis. The mean age was 50.1 years. Males accounted for 75.4%. Fifty-six percent were individuals with paraplegia and 45.4% had incomplete SCI; mean duration of SCI was 18.9 years. Fifty-four percent respondents had bachelor degree education. Fifty-six percent of respondents had medical rehabilitation for less than 6 months. Only half of respondents received vocational rehabilitation, of which the majority received vocational counseling. Half of the respondents were satisfied with the vocational rehabilitation services. Employment rate decreased from 75.73% before SCI to 53.1% after SCI. Those who were not employed were retired or pensioned (21.8%), in education (11.4%), housewives/husband (6.2%) or seeking employment (3.8%). Around 40% respondents were employed in less than 1 year after injury, however, only 23% of respondents were able to return to the same workplace. The most notable change in the work situation was reduced and more flexible working hours (64.4%). The mean working hours decreased from 40.9 hours/week before SCI to 31 hours/week after SCI. The proportion of respondents worked in manual occupations decreased from 47.6% before SCI to 18.8% after SCI. Before SCI, the proportion of respondents who were satisfied with their job were 86.6% and decreased to 68% after SCI. However, the majority of respondents (76%) rated the accessibility of their workplace as good. Multivariable logistics regression showed that employment status after SCI was positively associated with having paraplegia (p-value=0.046), incomplete injury (p-value=0.012), higher functional independence score (p-value<0.001) and less pain interference in daily activities (p-value=0.046).
A higher than usual employment rate after SCI in Australia (over 50%) was found. Individuals with paraplegia, incomplete injury, higher functional independence, and less pain interference are more likely to be employed after SCI. Vocational rehabilitation professionals should work hand in hand with medical professionals to address clinical problems such as pain and functional independence to improve vocational outcomes.


Astri Ferdiana is a public health researcher with more than 10 years of experience. She has vast experience with quantitative and qualitative methods in public health research. Her research interests are disability, infectious diseases and occupational health. She completed her PhD dissertation on spinal cord injury and employment at the University of Groningen, the Netherlands. Currently she is an assistant professor at the Department of Public Health, Faculty of Medicine University of Mataram in Indonesia. She is also a research consultant for Netherlands Leprosy Relief Indonesia.
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Dr Anestis Divanoglou
Research and Development co-ordinator
Linköping University

Qualities and characteristics of peer-mentors with spinal cord injury in Active Rehabilitation training programs

11:30 AM - 11:45 AM


Active Rehabilitation (AR) includes residential community rehabilitation programs lasting 7-10 days, with peer-mentors as trainers and educators. The focus of these programs is to support individuals with spinal cord injury (SCI) to reach their full potential at an activity and participation level.
Peer-mentors are perceived as credible as they use the right language and they have a lived experience of SCI. However, little is known about the qualities and characteristics of peer-mentors, and whether the abilities they have acquired can be described in a way relevant for SCI-rehabilitation.
The aim of this study was to compare peer-mentors and participants in AR programs in terms of characteristics, physical independence, wheelchair skills and self-efficacy.

This study is part of the INTERnational Project for the Evaluation of “activE Rehabilitation” (inter-PEER). Data collection involved an online survey that was completed by all participants with SCI in AR programs (years 2018-2019) in Sweden. All peer-mentors involved in AR programs during the years 2014-2019 were invited to complete the same survey. For this study, data collected with the Spinal Cord Independence Measure Self-report (SCIM-SR), the Wheelchair Skills Test Questionnaire (WST-Q) and the Moorong Self-Efficacy Scale (MSES) were used. Between-group differences were assessed using the Chi-squared test, the Mann-Whitney U-test, the Student t-test and multivariable linear regression analyses. Age, participant/peer-mentor, gender and paraplegia/tetraplegia were included as independent variables in all analyses. For SCIM-SR and WST-Q, additional variables were complete/incomplete injury and months since injury. For MSES, additional variables were partner/single, working/not working, and up to secondary/tertiary education.

Forty-two peer-mentors and 94 program-participants responded. Their mean age, and distribution of gender, level of education, civil status, completeness and cause of injury were similar. More peer-mentors worked for wages (p<0.001), and more program-participants were retired due to health condition (p=0.005). There was a greater proportion of persons with tetraplegia among program-participants, as compared to peer-mentors (p=0.003). The strongest explanatory variable for higher scores on the total SCIM-SR was having a lower level injury (participants with paraplegia scored 17 points higher than those with tetraplegia). Also, being a peer-mentor and a man were associated with higher scores (Adj R²=0.55). Level of injury contributed the most to the explained variance in the subscales self-care, and respiration and sphincter management, where participant/peer-mentor was not a significant contributor. Being a peer-mentor was however the most important explanatory variable for higher scores in the mobility subscale (Adj R²=0.45; peer-mentors scored 7,3 points higher than participants). Having a paraplegia, being a peer-mentor and being a man were all independent explanatory variables for higher wheelchair skills ability and self-efficacy. The independent variables could not explain variances in the MSES.

This is the first study to report the characteristics of peer-mentors in AR training programs, and compare them to program-participants. The associations demonstrate relevant targets and benchmarks for community peer-based rehabilitation programs. In particular, interaction with peer-mentors can inspire persons with SCI to strive for a higher level of mobility and wheelchair skills.


Anestis Divanoglou (Physiotherapist, PhD) works as the Research & Development coordinator at the Department of Rehabilitation Medicine, Linköping University Hospital in Sweden. Anestis is leading the International Project for the Evaluation of “activR Rehabilitation” (Inter-PEER project) - an international collaborative initiative of researchers and community organisations that evaluates the effectiveness of Active Rehabilitation training programs. These residential community rehabilitation programs last 7-10 days and are led by peer mentors as trainers and educators. A full list of publications and previous positions can be seen here: https://orcid.org/0000-0001-7376-6793 https://www.researchgate.net/profile/Anestis_Divanoglou2 Anestis has a wide experience in curriculum development, accreditation processes, course development and teriary teaching in Neurological Physiotherapy in Cyprus (2011), Australia (2012-2017) and Iceland (2017-2020). As Senior Physiotherapist, he contributed to the development of the Spinal Unit at the Spinalis SCI Centre at Princess Marina Hospital in Gaborone, Botswana.
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Dr Raymond Onders
Professor Of Surgical Innovation
University Hospitals Cleveland Medical Center

Functional Electrical Stimulation to Help in the Recovery of Respiration: The Diaphragm Pacing Experience

11:45 AM - 12:00 PM


Background: Functional electrical stimulation (FES) has been shown to be of significant benefit in spinal cord injury (SCI) rehabilitation. FES benefits are dose-dependent. Furthermore, FES increases afferent input stimulating neuroplastic changes and is useful in directing the rehabilitation of specific motor pathways. In cervical SCI, there is a significant risk of respiratory failure requiring mechanical ventilation (MV). MV leads to negative respiratory neuroplasticity with maladaptive respiratory neural pathways and rapid ventilator induced diaphragm dysfunction with atrophy and conversion of muscle fibers. Targeted FES can guide these remodeling mechanisms toward the formation of functional, rather than maladaptive, neural pathways while maintaining muscle function. This reports our experience with diaphragm pacing (DP) in early SCI injured patients to not only replace MV but as a tool to help in recovery of spontaneous ventilation.

Methods: This is a retrospective review of prospective IRB approved databases of all patients who underwent DP. All patients had laparoscopically placed electrodes and began DP conditioning to wean off MV. Analysis of recovery of diaphragm electromyography (dEMG) through the implanted pacing wires was also analyzed.

Results: Out of 602 patients between 2000 and 2019, 195 SCI MV were identified and of these 15 patients met the inclusion criteria of DP within 60 days of injury. All patients failed standard weaning assessments and none had diaphragm movement while attempting weaning. Average age was 40.5 years (16 to 75 years). The average time on MV was 17.7 days (6-52). All had cervical level injuries. Ten patients (67%) weaned completely off MV in an average of 16.9 days (1 to 56). Eight of those patients were successfully decannulated and 1 patient avoided tracheostomy. Nine patients regained volitional breathing and were able to wean off DP. To date, 8 patients are alive for an average of 36 months post implant with no deaths related to DP. Seven of those patients are at home or senior living environment; one is still in rehabilitation. There were 5 patients who never weaned, four who died within 4 months of implant. Relevant factors in early death include the 2 patient’s age great than 60, episode of malignant hypothermia and fatal gastrointestinal bleeding. Also included in failure to wean is 2 out of the 3 gunshot wounds (GSW). The blast injury of GSW causes more lower motor neuron loss. Baseline and long term dEMG data was available on 8 patients. No patient had significant dEMG burst activity at baseline; 3 had some activity when given a hypoxic challenge when off of MV but it was minimal. Out of the remainder of 180 SCI patients who were implanted over 60 days, only 2 patients recovered volitional breathing.

Conclusions: DP improves the quality of life and decrease the morbidity and mortality of patients on MV. This report highlights the benefits of early DP in helping in the recovery of natural respiration in a significant 60% of patients. Early implantation should become the standard of care for SCI MV patients with limitations in age over 60 or GSW.


Dr Raymond P. Onders is Chief of General Surgery at University Hospitals Cleveland Medical Center and Professor of Surgery at Case Western Reserve University School of Medicine. He is honored with the Walter and Margaret Remen Chair of Surgical Innovation. Over the last 20 years, he has focused his research efforts on ways to help people breathe naturally using their own diaphragm. He has authored multiple publications and book chapters on the primary muscle of breathing –the diaphragm. He has trained surgeons around the world on the technique of diaphragm pacing to allow patients freedom from tracheostomy mechanical ventilation. Diaphragm pacing, electrical stimulation of the diaphragm muscle, was a new technology aimed at either replacing or delaying the need for mechanical ventilation or maintaining and improving normal breathing. One of his first research subjects was the late Christopher Reeve (Superman). Diaphragm pacing technology was recognized as one of the most important medical innovations at the 6th Medical Innovation Summit. He has given invited lectures around the world and presented his research at numerous scientific meetings. He has helped spread this knowledge training surgeons to do the diaphragm pacing operation in over 30 countries which has helped countless patients worldwide. His present research focuses on using diaphragm pacing to shorten the time to wean from a ventilator on all intensive care unit patients which is one of the largest health care expenditures in the United States. His advancements in the technology of pacing the diaphragm have led to multiple patents. He co-founded the medical device company Synapse Biomedical which helped to bring this technology to patients.
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Dr Fiona Barr
Consultant In Healthcare
NHS England

A Reintegration Care Pathway for Children & Young People with Spinal Cord Injury: Service User Led Development of a National Model

12:00 PM - 12:15 PM


Incidence of Spinal Cord Injury in children and young people is low in England (5 - 10 per million per year). The exact figure is hard to determine as these patients are currently managed within numerous different services.

Challenges for this group include lack of awareness and consequent failure to refer, delayed or denied access to specialised SCI services; varied routes through numerous services into SCI Services at different times post injury, conflicting advice and management and poor co-ordination of care and communication across involved stakeholder groups.

National Care Pathways were introduced in 2012 to guide management of adults sustaining and living with SCI but these pathways did not readily translate to the management of children and young people sustaining SCI and therefore bespoke pathways were required.

The aim of this project was to create a patient centric Reintegration pathway, focussed on meeting the needs of the child or young person and their families, from the point of diagnosis, through initial rehabilitation and discharge home.

Action research methodology engaged children and young people with spinal cord injury, their families and all stakeholder groups involved in provision of their health and support services, to create a bespoke Reintegration Pathway.

A multi-stakeholder workshop mapped out key requirements and areas of need to be addressed. A draft pathway, containing a process algorithm defining events (assessment/investigations; interventions; verbal & written communications) and timescales was prepared. Based on the World Health Organisation International Classification of Function, Disability & Heath framework (ICF), the algorithm was supported by the four ICF domains - Body Systems & Functions, Activity, Participation and Environment. Clinical and process outcome measures were also mapped to each stage of the pathway.

The draft pathway was reviewed by SCI Centres, partnership organisations and patients with their families, through questionnaires, workshops and interviews, to assess the accuracy, content and timings of the pathway process algorithm. Clarity and specificity of the processes and information in the 4 pathway domains were evaluated against the needs of new and established patients.

The pathway was evaluated against 80 case histories. Patients sustained injury as a result of trauma or disease; male:female 57:43; age range 1 – 18 years; level of injury range C1 – L1, ASIA A – D.

Patient and families prioritised guidance on acute management; information provision; communication; co-ordination of services; preservation of the family unit and reintegration to school, social & leisure pursuits. Health service providers recommended additional age specific information, pre-admission and outreach guidance, alternative timeframes, simplification of language and re-location of specific information within the domains for clarity.

Evaluation data guided pathway revision: a second draft was circulated for national stakeholder consultation: final revisions were made and the amended pathway was passed for ratification by the National Spinal Services Clinical Reference Group ahead of national implementation.

A bespoke Reintegration pathway, evidenced by the priorities and needs of children and young people sustaining SCI, has been created to provide national standards and guidance to enhance future management of this patient group.


State registered physiotherapist, currently working as independent consultant to advise and monitor management and delivery of specialised spinal cord injury services in England. Research interests include restoration of function using Functional Electrical Stimulation, measurement of abnormal muscle tone and outcome measurement. Previous projects include review of national SCI Services in England, development of national service standards and care pathways for adults sustaining & living with spinal cord injury, clinical advisor to National SCI Database and SCI Information Management Programme.
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Prof Shane N. Sweet
Associate Professor
McGill University

Outcomes of Spinal Cord Injury Peer Mentorship: A community-based Delphi consensus study

12:15 PM - 12:30 PM


Introduction: Peer mentorship programs delivered by community-based spinal cord injury (SCI) organizations are multi-faceted and target a number of outcomes. Through a series of studies (i.e., a meta-synthesis, qualitative studies), we have identified up to 87 outcomes related to SCI peer mentorship. In order to help focus future efforts to evaluate peer programs, a consensus approach was taken to prioritize the outcomes of community-based SCI peer mentorship. Thus, the purpose of this study was to reach agreement among community-based SCI organization staff and individuals who provided and/or received community-based SCI peer mentorship on which 87 outcomes were the most important for SCI peer mentorship.

Methods: Individuals who provided mentorship (i.e. mentors), received mentorship (i.e. mentees), and/or worked at one of five SCI community-based organizations (i.e. staff) that partnered with the study were invited to participate in the study. Following a Delphi consensus methodology, participants rated the importance of each listed outcome related to SCI peer mentorship on an 11-point Likert scale across three rounds (0 = Irrelevant; 10 = One of the most important). Following each round, outcomes meeting the consensus criteria were kept for the next round (i.e. received a mean score of ≥ 8.0 OR ≥ 70% of participants rated the characteristic ≥ 8.0). Intraclass Correlation Coefficient (ICC) was calculated after each round to asses the consistency of ratings. Through a community-university partnership and using an integrated knowledge translation approach, members of community-based SCI organizations and researchers co-constructed, co-implemented, and co-interpreted the study and its results.

Results: Within each round, approximately 50% of participants were mentors, 30% mentees, and 20% staff. After Round 1 (n=107 participants), 73 of 87 outcomes were retained based on the consensus criteria with an ICC of 0.98. In Round 2 (n=65 participants; ICC = .97), 60 outcomes were kept for the next round. After Round 3 (n = 57 participants, ICC = .97), 25 outcomes met the criteria to be considered as a very important outcome of SCI peer mentorship. Examples of outcomes that were retained include: independence, confidence, hope, dignity, resilience, reduced isolation, SCI knowledge, understanding, and normalization. Example outcomes that were removed are enjoyment, acceptance, reduced depression/anxiety, problem solving, and friendships. In line with an integrated knowledge translation approach, representatives from community-based spinal cord injury (SCI) organizations and researchers co-interpreted these results.

Conclusions: Through a consensus methodology, individuals involved in SCI peer mentorship deemed 25 outcomes as the most important for SCI peer mentorship. These results help provide a better understanding of the outcomes that these individuals consider being the greatest impact of SCI peer mentorship. The refined list can focus SCI peer mentorship evaluation efforts and will be used to inform the co-development of a SCI peer mentorship evaluation tool by this community-university partnership.


Dr. Shane Sweet is an exercise and health psychologist and a disability and community-based researcher. He is an associate professor in the Department of Kinesiology and Physical Education and the co-director of the Theories and Interventions in Exercise and Health Psychology Laboratory at McGill University. The overarching goal of Shane’s program of research is to enhance the lives of adults with spinal cord injury. He works alongside community-based organizations to understand, promote, and evaluate peer support services and programs for adults with spinal cord injury.