Colleen O'Connell - Academia.edu (original) (raw)

Papers by Colleen O'Connell

BMC Health Services Research

Background To describe the key findings and lessons learned from an international pilot study tha... more 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 subset of survey items relevant to the themes of specialized care, timeliness, patient-centeredness, and evidence-based care were operationalized as structure or process indicators. Percentages of facilities reporting the structure or process to be present, and percentages of indicators met by each facility were calculated and reported separately for facilities from high-income countries (HIC) and from low and middle-income countries (LMIC) to identify “hard to meet” indicators defined as those met by less than two-thirds of facilities and to describe performance level. Results A total of 26 acute and 26 rehabilitation facilities from 25 co...

Patient Related Outcome Measures, 2021

The objectives of this study were to 1) assess the content validity of generic preference-based m... more 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 sites across Canada. The PGI, EQ-5D-5L and Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) were administered through an online or hardcopy survey and scores compared for convergent validation. Domains nominated by participants as important to their health-related quality of life were generated using the PGI, classified using the International Classification of Functioning, Disability and Health (ICF) and mapped onto GPBMs to determine content coverage. Results: Fifty-two participants (N=28 female; 61.3 ± 11.6 mean age ± standard deviation (SD); 3.5 ± 2.9 mean ± SD years since diagnosis) completed this study. The top three ICF domains identified by participants were recreation and leisure, lower limb mobility, and interpersonal relationships. The Quality of Well-Being Self-Administered (QWB-SA) scale had the highest content coverage (87%) and the Health Utilities Index 3 (HUI3) had the lowest (33%). Two domains were covered by all GPBMs and no GPBM included all domains identified as important by participants. A moderate correlation coefficient of 0.52 between the PGI and EQ-5D-5L was found. Conclusion: The majority of GPBMs covered only approximately half of the domains important to individuals with ALS suggesting the need for an ALS specific preferencebased measure to better reflect the health-related quality of life of this population.

Journal of Neuromuscular Diseases, 2021

We report the recruitment activities and outcomes of a multi-disease neuromuscular patient regist... more 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 is collected for 5 specific diseases: Amyotrophic Lateral Sclerosis (ALS), Duchenne Muscular Dystrophy (DMD), Myotonic Dystrophy (DM), Limb Girdle Muscular Dystrophy (LGMD), and Spinal Muscular Atrophy (SMA). Since 2010, the CNDR has registered 4306 patients (1154 pediatric and 3148 adult) with 91 different neuromuscular diagnoses and has facilitated 125 projects (73 academic, 3 not-for-profit, 3 government, and 46 commercial) using registry data. In conclusion, the CNDR is an effective and productive pan-neuromuscular registry that has successfully facilitated a substantial number of studies over the past 10 years.

Journal of Neuromuscular Diseases, 2021

Background: Spinal Muscular Atrophy (SMA) is a rare disease that affects 1 in 11 000 live births.... more 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) used in adult SMA. Standardization of OM is essential to obtain high quality data that is comparable among neuromuscular clinics. Objective: To develop a recommended toolkit and timing of OM for assessment of adults with SMA. Methods: A modified delphi method consisting of 2 virtual voting rounds followed by a virtual conference was utilized with a panel of expert clinicians treating adult SMA across Canada. Results: A consensus-derived toolkit of 8 OM was developed across three domains of function, with an additional 3 optional measures. Optimal assessment frequency is 12 months for most patients regardless of therapeutic access, while pat...

Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques, 2020

ABSTRACT:Background:Spinal muscular atrophy (SMA) is a devastating rare disease that affects indi... more ABSTRACT: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 were conducted in a narrow pediatric population defined by age, severity, and genotype. Broad approval of therapy necessitates close follow-up of potential rare adverse events and effectiveness in the larger real-world population.Methods:The Canadian Neuromuscular Disease Registry (CNDR) undertook an iterative multi-stakeholder process to expand the existing SMA dataset to capture items relevant to patient outcomes in a post-marketing environment. The CNDR SMA expanded registry is a longitudinal, prospective, observational study of patients with SMA in Canada designed to evaluate the safety and effectiveness of novel therapies and pro...

Archives of Physical Medicine and Rehabilitation, 2018

To use the theoretical frameworks of implementation science to implement pressure injury (PI) pre... more To use the theoretical frameworks of implementation science to implement pressure injury (PI) prevention best practices in spinal cord injury (SCI) rehabilitation. Design: Quality improvement. Setting: Six Canadian SCI rehabilitation centers. Participants: Inpatients (NZ2371) admitted from 2011 to 2015. Interventions: The SCI Knowledge Mobilization Network (SCI KMN) selected and implemented 2 PI prevention best practices at 6 Canadian SCI rehabilitation centers: (1) completing a comprehensive PI risk assessment comprised of a structured risk assessment instrument followed by an individualized, interprofessional risk factor determination and prevention plan; and (2) providing structured and individualized PI prevention patient education. Active Implementation Frameworks provided a systematic approach to best practice implementation. Main Outcome Measures: Implementation indicators (completion rates) and patient outcomes (PI incidence, patient education survey). Results: After implementation, risk assessment completion rates improved from 46% to 94% (P<.05). Between initial (2012-2013) and full (2014-2015) implementation stages, completion rates improved for both interprofessional risk factor determination (67% to 96%) and prevention plans (67% to 94%). Documentation of patient education also increased to 86% (vs. 71% preimplementation). At rehabilitation admission 22% of patients had PIs, with 14% of individuals developing new PIs during rehabilitation. The overall PI prevalence was 30%. Considering only PIs of stage 2 or greater, prevalence was 21% and incidence 7%. There were no statistically significant differences in PI incidence between pre-and postimplementation. Patient education surveys indicated that PI education improved patients' knowledge of prevention strategies. Conclusions: Active Implementation Frameworks supported successful implementation of PI prevention best practices across the 6 participating SCI KMN sites. Achieving a reduction in PI incidence will require additional measures, and there is an ongoing need to strengthen the evidence base underpinning PI prevention guidelines.

Physical Medicine and Rehabilitation Research, 2016

Objective: To evaluate a method for objectively quantifying elbow muscle tone in a clinical setti... more Objective: To evaluate a method for objectively quantifying elbow muscle tone in a clinical setting using an instrumented manual stretch-reflex test. Methods: Seventy-nine participants with upper motor neuron syndrome (stroke, spinal cord injury, cerebral palsy and multiple sclerosis) were evaluated for elbow flexor and extensor tone using a wearable sensor system. Modified Ashworth Scale (MAS) scores of elbow flexors and extensors, and spasticity metrics derived from a uniform-jerk model during manual stretch-reflex test, were used in a linear discriminant analysis (LDA) to generate a probability based 0-10 score (.1 increment) that maps onto the MAS continuum. Results: Sensor derived metrics correlated significantly with EMG (onset time: r 2 =.7, p<.001; duration: r 2 =.9, p<.001) and explained as much as 50% of the variance in therapist-rated MAS score. The LDA resulted in 73% classification accuracy, although the "gold standard" MAS rating was a considerable source of error. Conclusions: The study demonstrates that a simple wearable sensor system in combination with a routine manual stretch-reflex test can be used to objectively quantify elbow flexor and extensor tone. These findings offer new hope of achieving objective measurement of muscle tone in the clinic.

Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques, 2013

Amyotrophic lateral sclerosis (ALS) is a relatively common cause of progressive weakness, respira... more Amyotrophic lateral sclerosis (ALS) is a relatively common cause of progressive weakness, respiratory failure and death. Although ALS has a low incidence of 1-2 per 100,000/year the cumulative lifetime risk has been shown to be as high as 1 in 338 1. There is no effective therapy to meaningfully extend survival but continued elucidation of the pathophysiology is resulting in continuously emerging targets and treatments for study in clinical trials 2. Unfortunately Canadian epidemiological ABSTRACT: 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 socioeconomic impact of ALS on Canadian society is unclear. The Canadian Neuromuscular Disease Registry (CNDR) is a national clinic-based registry of patients with neuromuscular diseases with the goal of facilitating the design and execution of clinical research. Methods: We conducted a national stakeholder survey to assess interest for a Canadian ALS registry and an assessment of expected case ascertainment. A dataset derivation meeting was held to establish the registry medical dataset. Results: We report the results of the national stakeholder survey, case ascertainment assessment, and the derived dataset that have resulted in the current implementation of a Canadian registry of patients with ALS. Conclusions: The development of this long sought-after resource is a significant step forward for the Canadian ALS patient and research communities that will result in more efficient clinical trial recruitment and advancements in our understanding of ALS in Canada. RÉSUMÉ: Création d'un registre canadien de patients atteints de la sclérose latérale amyotrophique. Contexte : La sclérose latérale amyotrophique (SLA) est une cause dévastatrice de faiblesse progressive, d'insuffisance respiratoire et de décès. À ce jour, il n'existe pas de traitement efficace pour prolonger significativement la survie des patients qui en sont atteints. De nouvelles cibles thérapeutiques et de nouveaux traitements font actuellement l'objet d'essais cliniques. Il existe peu de données épidémiologiques canadiennes sur la SLA et son impact socioéconomique sur la société canadienne est mal connu. Le Canadian Neuromuscular Disease Registry (CNDR) est un registre national, basé sur la présentation clinique de patients atteints de maladies neuromusculaires, dont le but est de faciliter la conception et la réalisation de la recherche clinique. Méthode : Nous avons effectué une enquête nationale auprès des parties concernées pour évaluer l'intérêt pour la création d'un registre canadien de la SLA et le nombre de cas attendus. Une rencontre a eu lieu dans le but d'élaborer un fichier de données afin de définir le fichier médical du registre. Résultats : Nous rapportons les résultats de l'enquête nationale effectuée auprès des parties concernées, comment les cas seront évalués et quelles données seront recueillies. Ces démarches ont servi de base à l'établissement d'un registre canadien de patients atteints de la SLA. Conclusions : Le développement de cette ressource attendue depuis longtemps est un pas en avant important pour les patients canadiens atteints de la SLA et pour la communauté scientifique et facilitera le recrutement de patients pour les essais cliniques et l'avancement des connaissances dans le domaine de la SLA au Canada.

Canadian Journal of Respiratory, Critical Care, and Sleep Medicine, 2019

Amyotrophic Lateral Sclerosis (ALS) is a neurodegenerative disorder involving both upper and lowe... more 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. Mechanical ventilation is becoming increasingly accepted in ALS. In Canada, noninvasive ventilation is the most common form of ventilation applied, with tracheostomy ventilation being very uncommon. The current guideline addresses respiratory muscle testing, the benefits of mechanical ventilation in ALS, timing of initiation of ventilation and modes, settings and place of initiation. It also reviews diaphragm pacing and respiratory muscle training. Finally, given the challenges involved with tracheostomy ventilation in ALS, the question of tracheostomy ventilation is addressed.

Spinal Cord Series and Cases, 2020

JPO Journal of Prosthetics and Orthotics, 2012

STUDY DESIGN: Cohort study OBJECTIVES: To evaluate the impact of residential living location on h... more 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 enrolled in the Rick Hansen Spinal Cord Injury Registry (RHSCIR) from 2012 to 2018. Outcomes were analyzed using two measures of rurality: postal codes at community follow-up (rural versus urban) and residential travel distance to the nearest RHSCIR facility (>100km versus ≤100km). Outcomes studied included the Craig Hospital Inventory of Environmental Factors-Short Form (CHIEF-SF), Short Form-36 Version 2 (SF36v2), Life Satisfaction Questionnaire (LISAT-11), Spinal Cord Independence Measure (SCIM), secondary health complications and healthcare utilization patterns. Outcomes were assessed at 9 to 24 months post-discharge from initial h...

The Journal of Spinal Cord Medicine, 2019

Context: Although spinal cord injury or disease (SCI/D) results in complex biological and psychos... more 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, we describe the selection of Sexual Health structure, process and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission. Methods: Experts in sexual health and the SCI-High team identified key factors that influence the sexual health outcomes of rehabilitation interventions to inform Driver diagram development. This diagram informed the selection and development of indicators to promote a permissive environment for discussion of sexual health issues among regulated health care professionals (HCPs). A review of literature and psychometric properties of measurement tools facilitated final indicators selection. Results: The structure indicator is the proportion of rehabilitation HCPs who have completed annual preliminary sexual health training. The process indicator is the proportion of SCI/D inpatients that have a documented introduction to available local sexual health resources. The outcome indicator is a sexual health patient questionnaire used to assess sexual health patient outcomes and sexual health information/educational needs. Rapid-cycle piloting verified that the indicator tools developed are feasible for implementation. Conclusion: Successful implementation of the Sexual Health structure, process and outcome indicators will promote a permissive environment to enable open discussion, and lead to provision of equitable and optimal care related to sexual health following SCI/D. This will ultimately advance sexual health rehabilitation across the nation.

Journal of NeuroEngineering and Rehabilitation, 2018

Background: The pendulum test is commonly used to quantify knee extensor spasticity, but it is cu... more 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 conducted on 131 knees, from 93 patients, across four different patient cohorts. Clinical data included Modified Ashworth Scale (MAS) scores for knee extensors and flexors, and years since diagnosis. BioTone™ measures included extensor strength, passive and active range of motion, and pendulum tests of most affected or both knees. Pendulum test metrics included the relaxation index (RI), 1st flexion amplitude (F1amp) and plateau angle (Plat), where RI=F1amp/Plat. Two-way ANOVA tests were used to determine if pendulum test metrics were influenced by the degree of knee flexor spasticity graded by the MAS, and ANCOVA was used to test for confounding effects of age, years since injury, strength and range of motion (ROM). In order to identify the best pendulum test metrics, Receiver Operator Characteristic analysis and logistic regression (LR) analysis were used to classify knees by spasticity status (none or any) and severity (low/moderate or high/severe). Results: Pendulum test metrics for knee extensors were not influenced by degree of flexor spasticity, age, years since injury, strength or ROM of the limb. RI, F1amp and Plat were > 70% accurate in classifying knees by presence of clinical spasticity (from the MAS), but were less accurate (< 70%) for grading spasticity level. The best classification accuracy was obtained using F1amp and Plat independently in the model rather than using RI alone. Conclusions: We conclude that the pendulum test has good predictive value for detecting the presence of extensor spasticity, independent of the existence of flexor spasticity. However, the ability to grade spasticity level as measured by MAS using the RI and/or F1amp may be limited. Further study is warranted to explore if the pendulum test is suitable for quantifying more severe spasticity.

Sensors, 2017

Background: The timed-up-and-go test (TUG) is one of the most commonly used tests of physical fun... more 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 our knowledge no studies have published the minimal detectable change of these measurements. Methods: Eleven adults performed the TUG three times each under normal and slow walking conditions, and 3 m and 5 m walking distances, in a 12-camera motion analysis laboratory. An inertial measurement unit (IMU) with tri-axial accelerometers and gyroscopes was worn on the upper-torso. Motion analysis marker data and IMU signals were analyzed separately to identify the six main TUG phases: sit-to-stand, 1st walk, 1st turn, 2nd walk, 2nd turn, and stand-to-sit, and the absolute agreement between two systems analyzed using intra-class correlation (ICC, model 2) analysis. The minimal detectable change (MDC) within subjects was also calculated for each TUG phase. Results: The overall difference between TUG sub-tasks determined using 3D motion capture data and the IMU sensor data was <0.5 s. For all TUG distances and speeds, the absolute agreement was high for total TUG time and walk times (ICC > 0.90), but less for chair activity (ICC range 0.5-0.9) and typically poor for the turn time (ICC < 0.4). MDC values for total TUG time ranged between 2-4 s or 12-22% of the TUG time measurement. MDC of the sub-task times were higher proportionally, being 20-60% of the sub-task duration. Conclusions: We conclude that a commercial IMU can be used for quantifying the TUG phases with accuracy sufficient for clinical applications; however, the MDC when using inertial sensors is not necessarily improved over less sophisticated measurement tools.

Spinal Cord, 2016

Study design: Clinical practice guidelines. Objectives: The objective was to develop the first Ca... more 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 developed in accordance with the Appraisal of Guidelines for Research and Evaluation II tool. A Steering Committee and Working Group reviewed the relevant evidence on neuropathic pain management (encompassing screening and diagnosis, treatment and models of care) after SCI. The quality of evidence was scored using Grading of Recommendations Assessment, Development and Evaluation (GRADE). A consensus process was followed to achieve agreement on recommendations and clinical considerations. Results: The Working Group developed 12 recommendations for screening and diagnosis, 12 recommendations for treatment and 5 recommendations for models of care. Important clinical considerations accompany each recommendation. Conclusions: The Working Group recommendations for the management of neuropathic pain after SCI should be used to inform practice.

Canadian Medical Association Journal, 2020

Management of patients living with amyotrophic lateral sclerosis (ALS) requires specialized multi... more Management of patients living with amyotrophic lateral sclerosis (ALS) requires specialized multidisciplinary holistic care. • Disease-modifying pharmacologic therapies to treat ALS include riluzole and edaravone. • Close attention to nutritional support and respiratory care is required for optimal care in ALS. • Multiple treatments are available to ease the symptoms of ALS. • Palliative care and caregiver support are important components of assisting patients along their journey with ALS.

Canadian Medical Association Journal, 2020

La prise en charge des patients atteints de sclérose latérale amyotrophique (SLA) requiert une ap... more La prise en charge des patients atteints de sclérose latérale amyotrophique (SLA) requiert une approche holistique multidisciplinaire spécialisée.

Spinal Cord Series and Cases

BMC Health Services Research

Patient Related Outcome Measures, 2021

Journal of Neuromuscular Diseases, 2021

Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques, 2020

Archives of Physical Medicine and Rehabilitation, 2018

Physical Medicine and Rehabilitation Research, 2016

Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques, 2013

Canadian Journal of Respiratory, Critical Care, and Sleep Medicine, 2019

Spinal Cord Series and Cases, 2020

JPO Journal of Prosthetics and Orthotics, 2012

The Journal of Spinal Cord Medicine, 2019

Journal of NeuroEngineering and Rehabilitation, 2018

Sensors, 2017

Spinal Cord, 2016

Canadian Medical Association Journal, 2020

Spinal Cord Series and Cases