Colleen Marie O'Connell

• MD
• Dalhousie University

Objective: To understand patient, caregiver, and clinician perspectives on patient-reported outcome measures, critical functional domains, and disease-modifying therapies in adult spinal muscular atrophy. Design: An exploratory qualitative single-site study. Patients: Ten adults with spinal muscular atrophy and two clinicians participated in semi...

Objective Amyotrophic lateral sclerosis (ALS) is a motor neuron disease in which the causes remain unclear, particularly the contribution of environmental factors. Thus, we created a multifactorial database to investigate the association between long-term exposure to urbanization, air pollution, water pollution, and the development of ALS. Approach...

Objective: The self-administered version of the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) is used to monitor function and disease progression in individuals with Amyotrophic Lateral Sclerosis (ALS). However, the performance of the self-administered ALSFRS-R has not been assessed using Rasch Measurement Theory. Theref...

Background: ALS is a progressive neurodegenerative disease without a cure and limited treatment options. Edaravone, a free radical scavenger, was shown to slow disease progression in a select group of patients with ALS over 6 months; however, the effect on survival was not investigated in randomized trials. The objective of this study is to describ...

Study design: Cohort study. Objectives: To evaluate the association between residential living location and health outcomes, environmental barriers, quality of life, and healthcare utilization patterns after traumatic spinal cord injury (tSCI). Setting: Community setting, Atlantic Canada. Methods: An ambispective study of data collected on a...

RNA sequencing analysis is an important field in the study of extracellular vesicles (EVs), as these particles contain a variety of RNA species that may have diagnostic, prognostic and predictive value. Many of the bioinformatics tools currently used to analyze EV cargo rely on third-party annotations. Recently, analysis of unannotated expressed RN...

Introduction Despite decades of research, causes of ALS remain unclear. To evaluate recent hypotheses of plausible environmental factors, the aim of this study was to synthesize and appraise literature on the potential associations between the surrounding environment, including urbanization, air pollution and water pollution, and ALS. Methods We c...

Background To describe the key findings and lessons learned from an international pilot study that surveyed spinal cord injury programs in acute and rehabilitation facilities to understand the status of spinal cord injury care. Methods An online survey with two questionnaires, a 74-item for acute care and a 51-item for rehabilitation, was used. A...

Background: Spinal Muscular Atrophy (SMA) is a hereditary neuromuscular disease with an estimated prevalence of 1/10 000 births. SMA is increasingly recognized as a multi-system disease with a need to study additional under-recognized health domains such as quality of life, fatigue, bulbar function, respiratory function, and independence. Objecti...

Objective The objective of this study is to determine the physical evaluations and assessment tools used by a group of Canadian healthcare professionals treating adults with spasticity. Methods A cross-sectional web-based 19-question survey was developed to determine the types of physical evaluations, tone-related impairment measurements, and asse...

Objective: Individuals with major limb amputation(s) frequently experience phantom limb sensations, which are described as vivid impressions of either parts or entire missing limb(s). Despite the high incidence and prevalence of phantom limb pain (PLP), the underlying pathophysiology of PLP remains poorly understood. The objective of this study wa...

STUDY DESIGN: Cohort study OBJECTIVES: To evaluate the impact of residential living location on health outcomes, environmental barriers, quality of life, and healthcare utilization patterns after traumatic spinal cord injury (tSCI).SETTING: Community setting, Atlantic CanadaMETHODS: An ambispective study of data collected on a subset of individuals...

Study design: Mixed-methods observational study. Objective: To describe the sleep-disordered breathing (SDB) management models of three spinal cord injury (SCI) rehabilitation centres that are screening, diagnosing and treating uncomplicated SDB, and to determine their common elements. Setting: Three specialist SCI rehabilitation centres. Met...

Objective: The aim of this study was to refine the items of a preference-based amyotrophic lateral sclerosis health-related quality of life scale (PB-ALS HRQL scale) based on domains generated in a previous study. Methods: Survey methodology was used to assess item importance rating (IR) and independence. Median importance was calculated for each i...

Study design Clinical practice guidelines. Objectives The objective was to update the 2016 version of the Canadian clinical practice guidelines for the management of neuropathic pain in people with spinal cord injury (SCI). Setting The guidelines are relevant for inpatient, outpatient and community SCI rehabilitation settings in Canada. Methods...

Amyotrophic lateral sclerosis (ALS) is a progressive neurological disease affecting upper and lower motor neurons, causing weakness and impairment of speech, swallowing, and respiratory functions. There is currently no cure, and treatment is largely focused on care through specialized multidisciplinary clinics, addressing symptom management, and ma...

Disasters can affect people and populations at any time and in any place in the world; sudden-onset natural events such as earthquakes, climate-related extreme weather events, conflicts, and even pandemics can cause significant damage, disruption to health services, and human suffering. Persons with disability are particularly vulnerable in disaste...

Background There is an urgent unmet need for new therapies in amyotrophic lateral sclerosis. In a clinical study with healthy volunteers, levosimendan, a calcium sensitiser, was shown to improve neuromechanical efficiency and contractile function of the human diaphragm. We aimed to evaluate the safety and efficacy of oral levosimendan in people wit...

Objective: To understand current genetic testing practices at Canadian ALS clinics. Methods: An online survey and phone interviews, with clinicians practicing in 27 ALS clinics in Canada, were employed to collect data. Quantitative and qualitative analyses were conducted. Results: Ninety-three percent (25/27) of ALS clinics in Canada are routinely...

Objectives The population of Americans with limb loss is on the rise, with a different profile than in previous generations (e.g., greater incidence of amputation due to diabetes). This study aimed to identify the key characteristics of phantom limb sensation (PLS) and pain (PLP) in a current sample of Americans with limb loss. Methods This cross-...

Background Globally, medical cannabis legalization has increased in recent years and medical cannabis is commonly used to treat chronic pain. However, there are few randomized control trials studying medical cannabis indicating expert guidance on how to dose and administer medical cannabis safely and effectively is needed. Methods Using a multista...

Objective The objectives of this study were to 1) assess the content validity of generic preference-based measures (GPBMs), and (2) examine the convergent validity of the EuroQol 5 Dimension 5 Level (EQ-5D-5L), against the Patient Generated Index (PGI) in Amyotrophic Lateral Sclerosis (ALS). Methods Participants were recruited from 3 clinical site...

BACKGROUND: Chronic hypercapnic respiratory failure is common in advanced chronic obstructive pulmonary disease (COPD) and it is associated with adverse outcomes such as repeat hospitalization and death. Long-term non-invasive ventilation (NIV) has been used with uncertain efficacy in this condition, but recent clinical trials suggest possible surv...

Background: Spinal Muscular Atrophy (SMA) is a rare disease that affects 1 in 11 000 live births. Recent developments in SMA treatments have included new disease-modifying therapies that require high quality data to inform decisions around initiation and continuation of therapy. In Canada, there are no nationally agreed upon outcome measures (OM)...

DNA methylation has garnered much attention in recent years for its diagnostic potential in multiple conditions including cancer and neurodegenerative diseases. Conversely, advances regarding the potential diagnostic relevance of DNA methylation status have been sparse in the field of amyotrophic lateral sclerosis (ALS) even though patients diagnos...

An online survey. To follow-up with and re-query the international spinal cord community’s response to the Coronavirus Disease 2019 (COVID-19) pandemic by revisiting questions posed in a previous survey and investigating new lines of inquiry. An international collaboration of authors and participants. Two identical surveys (one in English and one i...

Aims Opioid misuse and overuse has contributed to a widespread overdose crisis and many patients and physicians are considering medical cannabis to support opioid tapering and chronic pain control. Using a five‐step modified Delphi process, we aimed to develop consensus‐based recommendations on: 1) when and how to safely initiate and titrate cannab...

Traumatic cauda equina injury (TCEI) is usually caused by spine injury at or below L1 and can result in motor and/or sensory impairments and/or neurogenic bowel and bladder. We examined factors associated with recovery in motor strength, walking ability, and bowel and bladder function, to aid in prognosis and establishing rehabilitation goals. The...

We report the recruitment activities and outcomes of a multi-disease neuromuscular patient registry in Canada. The Canadian Neuromuscular Disease Registry (CNDR) registers individuals across Canada with a confirmed diagnosis of a neuromuscular disease. Diagnosis and contact information are collected across all diseases and detailed prospective data...

Response to provincial governments’ decisions regarding monitoring for adults with Spinal Muscular Atrophy - Victoria L Hodgkinson, Kristine Chapman, Aaron Izenberg, Hanns Lochmüller, Colleen O’Connell, Erin K O’Ferrall, Maryam Oskoui, Gerald Pfeffer, Stephanie Plamondon, Xavier Rodrigue, Christen Shoesmith, Jodi Warman-Chardon, Bernard Brais, Lawr...

Background: Spinal muscular atrophy (SMA) is a devastating rare disease that affects individuals regardless of ethnicity, gender, and age. The first-approved disease-modifying therapy for SMA, nusinursen, was approved by Health Canada, as well as by American and European regulatory agencies following positive clinical trial outcomes. The trials we...

Practical Guidance for Outpatient Spasticity Management during the Coronavirus (COVID-19) Pandemic: Canadian Spasticity COVID-19 Task Force - Rajiv Reebye, Heather Finlayson, Curtis May, Lalith Satkunam, Theodore Wein, Thomas Miller, Chris Boulias, Colleen O’Connell, Anibal Bohorquez, Sean Dukelow, Karen Ethans, Farooq Ismail, Waill Khalil, Omar Kh...

Use of bionic overground exoskeletons to assist with neurological rehabilitation is becoming increasingly prevalent and has important implications for physiotherapists and their patients. Yet, there is a paucity of research about the impact of integrating this technology on physiotherapists’ work. The purpose of this study was to explore how the tr...

Physical medicine and rehabilitation (PMR) is evolving in low- to middle-income countries. Although established as a separate specialty in Bangladesh 40 years ago, there has been no formal documentation of the history and current state of PMR, or associated disability issues in Bangladesh. The aim of this review is to provide a brief overview of th...

Context: Although spinal cord injury or disease (SCI/D) results in complex biological and psychosocial impairments that adversely impact an individual’s overall quality of sexual life, sexual health is poorly integrated into the current rehabilitation processes. Therefore, it is vital to promote sexual health as a rehabilitation priority. Herein, w...

Context/objective: The spinal cord injury (SCI) knowledge mobilization network (KMN) is a community of practice formed in 2011 as part of a national best practice implementation (BPI) effort to improve SCI care. This study objective was to determine whether completion and documentation of pain practices could be improved in a neurorehabilitation se...

Context: Implementing research findings into clinical practice is challenging. This manuscript outlines the experiences and key learnings from a network that operated as a community of practice across seven Canadian Spinal Cord Injury (SCI) rehabilitation centers. These learnings are being used to inform a new implementation-focused network involvi...

BACKGROUND CONTEXT Traumatic cauda equina injury (TCEI) is usually caused by spine injury at L1 or below, and can result in motor and/or sensory impairments and/or neurogenic bowel and bladder. PURPOSE This study was undertaken to examine the factors that can potentially predict motor, sensory, bowel, and bladder function to aid in prognosis and o...

Extracellular vesicles, small reservoirs that carry various biomolecules, have gained significant interest from the clinical field in recent years based on the diagnostic, therapeutic and prognostic possibilities they offer. While information abound regarding the clinical potential of such vesicles in diverse conditions, the information demonstrati...

Pattern recognition based myoelectric control has been widely explored in the field of prosthetics, but little work has extended to other patient groups. Individuals with neurological injuries such as spinal cord injury may also benefit from more intuitive control that may facilitate more interactive treatments or improved control of functional ele...

Amyotrophic Lateral Sclerosis (ALS) is a neurodegenerative disorder involving both upper and lower motor neurons that results in progressive weakness of skeletal muscles. Regardless of site of first onset, death usually occurs as a result of progressive respiratory muscle involvement, with 50% of patients dying within three years of symptom onset....

Background: Pressure injuries (PIs) represent a frequent, often preventable, secondary complication of spinal cord injury (SCI) with serious consequences to health, societal participation, and quality of life. Specialized knowledge and service delivery related to treatment and prevention are typically located within major health centers. Introducti...

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder associated with the progressive death of motor neurons. Mean survival for a patient diagnosed with ALS is between 2 to 5 years. Early and efficient diagnosis of the various forms of ALS remains a significant challenge, resulting in a need to identify clinically-relevant biomarkers...

Background: Amyotrophic lateral sclerosis (ALS) is a progressive motor neuron disease resulting in muscle weakness, dysarthria and dysphagia, and ultimately respiratory failure leading to death. Half of the ALS patients survive less than 3 years, and 80% of the patients survive less than 5 years. Riluzole is the only approved medication in Canada...

Background: Regular monitoring combined with early and appropriate use of airway clearance can reduce unplanned hospital admissions for patients with neuromuscular disease (NMD) and spinal cord injury (SCI). We aimed to describe and compare knowledge of guidelines, monitoring of cough effectiveness, clinician prescription/provision of airway clear...

Objective: To evaluate a new portable toolkit for quantifying upper and lower extremity muscle tone in patients with upper motor neuron syndrome (UMNS). Design: Cross-sectional, multi-site, observational trial to test and validate a new technology. Setting: Neurorehabilitation clinics at tertiary care hospitals. Participants: Four cohorts UMNS pat...

Abstract Background The pendulum test is commonly used to quantify knee extensor spasticity, but it is currently unknown to what extent common pendulum test metrics can detect spasticity in patients with neurological injury or disease, and if the presence of flexor spasticity influences the test outcomes. Methods A retrospective analysis was conduc...

Objective: To create a consensus statement on the considerations for treatment of anticoagulated patients with botulinum toxin A (BoNTA) intramuscular injections for limb spasticity. Design: We used the Delphi method. Setting: A multi-question electronic survey. Participants: Thirty-nine Canadian physicians who use BoNTA injections for spast...

Introduction: Current tertiary Spinal Cord Injury (SCI) rehabilitation funding and rehabilitation length of stay (R-LOS) in most North American jurisdictions are linked to an individual's impairment. Our objectives were to: 1) describe the impact of relevant demographic, impairment and medical complexity variables at rehabilitation admission on R-...

Objective: To analyze relationships among injury, demographic and environmental factors on function, HRQoL and life satisfaction in individuals with traumatic SCI. Design: prospective observational registry cohort study SETTING: 31 acute and rehabilitation SCI centres PARTICIPANTS: Participants (N=340) from the Rick Hansen Spinal Cord Injury Reg...

Return to living at home is an important patient-reported outcome following traumatic spinal cord injury (tSCI). Specialized inpatient rehabilitation assists such patients in maximizing function and independence. Our project aim was to describe those patients receiving specialized rehabilitation after tSCI in Canada, and to determine if such rehabi...

Background: The timed-up-and-go test (TUG) is one of the most commonly used tests of physical function in clinical practice and for research outcomes. Inertial sensors have been used to parse the TUG test into its composite phases (rising, walking, turning, etc.), but have not validated this approach against an optoelectronic gold-standard, and to...

Specialized centres of care for persons sustaining a traumatic spinal cord injury (tSCI) have been established in many countries, but the ideal system of care has not been defined. The objective of this study was to describe care delivery, with a focus on structures and services, for persons with tSCI in Canada. A survey was sent to 26 facilities (...

Objective: To describe a 6-month follow-up of a specialized paediatric wheelchair and seating programme in Haiti. Design: Descriptive design using a structured survey and open-ended questions. Methods: Concurrent with a seating and wheelchair programme conducted in northern Haiti, beneficiaries and their families were introduced to the study,...

Study design: Clinical practice guidelines. Objectives: The project objectives were to develop the first Canadian recommendations on a model of care for the management of at- and below-level neuropathic pain in people with spinal cord injury (SCI). Setting: The guidelines are relevant for inpatient and outpatient SCI rehabilitation settings i...

Study design: Clinical practice guidelines. Objectives: The objective was to develop the first Canadian clinical practice guidelines for the management of neuropathic pain in people with spinal cord injury (SCI). Setting: The guidelines are relevant for inpatient and outpatient SCI rehabilitation settings in Canada. Methods: The guidelines were dev...

Characteristics of traumatic spinal cord injury (tSCI) patients admitted to the Saint John Regional Hospital and the Stan Cassidy Center for Rehabilitation from 2011 to 2014 were examined. Methods: Demographic, neurological and functional outcome data for 18 patients, who had consented to participate in a database for tSCI in Canada, was obtained....

Objective: To survey amyotrophic lateral sclerosis (ALS) health care providers to determine attitudes regarding physician-assisted death (PAD) after the Supreme Court of Canada (SCC) invalidated the Criminal Code provisions that prohibit PAD in February 2015. Methods: We conducted a Canada-wide survey of physicians and allied health professional...

As societies become more complex and interconnected, the global risk for catastrophic disasters is increasing. Demand for expertise to mitigate the human suffering and damage these events cause is also high. A new field of disaster medicine is emerging, offering innovative approaches to optimize disaster management. Much of the information needed t...

To describe the functioning and participation of people with disabilities seen in Haiti Team Canada Healing Hands (TCHH) clinics before and after the 2010 earthquake. Cross-sectional survey administered at two different time periods, before and after the 2010 earthquake. TCHH rehabilitation clinics in Port au Prince, and in the Cap-Haitian region o...

Amyotrophic lateral sclerosis (ALS) is a condition primarily characterized by the selective loss of upper and lower motor neurons. Motor neuron loss gives rise to muscle tissue malfunctions, including weakness, spasticity, atrophy, and ultimately paralysis, with death typically due to respiratory failure within 2 to 5 years of symptoms' onset. The...

Background: Patient registries represent an important method of organizing "real world" patient information for clinical and research purposes. Registries can facilitate clinical trial planning and recruitment and are particularly useful in this regard for uncommon and rare diseases. Neuromuscular diseases (NMDs) are individually rare but in aggre...

Background Spasticity is a prevalent chronic condition among persons with upper motor neuron syndrome that significantly impacts function and can be costly to treat. Clinical assessment is most often performed with passive stretch-reflex tests and graded on a scale, such as the Modified Ashworth Scale (MAS). However, these scales are limited in sen...

Background: Amyotrophic lateral sclerosis (ALS) is a devastating cause of progressive weakness, respiratory failure and death. To date there is no effective therapy to meaningfully extend survival but continuously emerging targets and putative treatments are studied in clinical trials. Canadian epidemiological data on ALS is scarce and the socioec...

Great strides have been made in reducing morbidity and mortality following spinal cord injury (SCI), and improving long-term health and community participation; however, this progress has not been uniform across the globe. This review highlights differences in global epidemiology of SCI and the ongoing challenges in meeting the needs of individuals...

Improved disaster response has led to higher survival rates and an increasing number of injuries in relation to deaths (injury to death ratio). Recent earthquakes, in particular, have led to unprecedented numbers of spinal cord injuries. Meeting the needs of individuals with spinal cord injuries is particularly challenging when disaster strikes a l...

The provision of surgery within humanitarian crises is complex, requiring coordination and cooperation among all stakeholders. During the 2011 Humanitarian Action Summit best practice guidelines were proposed to provide greater accountability and standardization in surgical humanitarian relief efforts. Surgical humanitarian relief planning should o...

The World Report on Disability 2011 estimates that 0.5% of the population in developing countries is in need of prosthetic and orthotic services. However, in such environments, access to services and availability of data to support interventions are severely lacking. The 2010 earthquake in Haiti raised international awareness on the issue of person...

Limb amputations are frequently performed as a result of trauma inflicted during conflict or disasters. As demonstrated during the 2010 earthquake in Haiti, coordinating care of these patients in austere settings is complex. During the 2011 Humanitarian Action Summit, consensus statements were developed for international organizations providing car...

Members of the International Rehabilitation Forum (IRF), Emergency Rehabilitation Work Group (ERWG), with physical rehabilitation responses from the Kashmir, Sichuan and Haiti earthquake, as well as Hurricane Katrina and Cyclone SIDR described to sharev their collective experience with international physical medicine and rehabilitation response com...

Full document of 2011, Canadian Thoracic Home Mechanical Ventilation Guidelines (vs. Executive Summary)

Increasing numbers of patients are surviving episodes of prolonged mechanical ventilation or benefitting from the recent availability of userfriendly noninvasive ventilators. Although many publications pertaining to specific aspects of home mechanical ventilation (HMV) exist, very few comprehensive guidelines that bring together all of the current...

Introduction Physical Medicine and Rehabilitation is a goal oriented and patient centered specialty which focuses on functional restoration and quality of life of persons with disability. The patterns of injuries among survivors of recent disasters have, range from mild (single limb fracture) to catastrophic (spinal cord injury, amputation, traumat...

The earthquake that occurred in Haiti on 12 January 2010 resulted in massive infrastructure damage, and created one of the largest single-day loss of life events in modern history. Despite the tragic mortality rates, many people with catastrophic injuries including spinal cord injuries and amputations survived due to swift emergency responses by lo...

This report describes two cases in which the addition of an extra joint enhanced range of motion and improved function in persons with unilateral lower-limb amputation. Both individuals had significant disability in the workplace and at home before this modification. In the first case, an individual with a hemipelvectomy had inadequate hip-joint fl...

The fisheries is one of the most dangerous industries in Canada. Possible contributory causes of the high rate of injuries are a fatalistic attitude to accidents and safety, and a high level of anxiety and worry among fishermen. These characteristics would be expected to lead to less attention to safety procedures and a consequent greater risk of a...