Browsing by Author "Samuel, Susan"
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Item Open Access A Multifaceted Educational Intervention to Increase Uptake of a Urinary Tract Infection Guideline(2016-01-22) Banks, Anke Marie; McLaughlin, Kevin; Samuel, Susan; Johnson, David; Hecker, KentPhysicians often fail to implement clinical practice guidelines. Our objective was to evaluate whether a multifaceted educational intervention would increase adherence to the American Academy of Pediatrics guideline regarding voiding cystourethrogram (VCUG) use in young children with a first febrile urinary tract infection. We conducted a prospective interventional study at one centre using a pretest-posttest design. We used a health promotion model to construct a multifaceted intervention that included an interactive lecture, clinical pathway and faxed reminder. Over the study period, pediatricians and non-pediatricians ordered a significantly greater monthly proportion of adherent VCUGs. There was a significant decrease in the pediatrician monthly ordering rate of VCUGs. Utilizing logistic regression, the odds of adherence to the guideline were significantly greater among pediatricians than non-pediatricians. In conclusion, following a multifaceted educational intervention, pediatricians were more likely to adhere to the VCUG guideline recommendation than prior to the intervention and than non-pediatricians.Item Open Access Clinical Prediction of Perinatal Arterial Ischemic Stroke(2022-06) Srivastava, Ratika; Kirton, Adam; Hill, Michael D; Richer, Lawrence; Samuel, Susan; Hagel, BrentPerinatal stroke is a well-defined but heterogenous group of disorders involving a focal disruption of cerebral blood flow between 20 weeks gestation and 28 days of life. At a combined incidence of 1:1000 live births, stroke in the perinatal period is more common than at any other time in childhood. Morbidity of perinatal stroke is high, and it is the most common cause of hemiparetic cerebral palsy. Years living with disability are amplified with deficits lasting a lifetime. Perinatal arterial ischemic stroke (PAIS) is the most common type of perinatal stroke. Advances in neuroimaging have allowed for exceptional growth in stroke diagnosis. However, etiology is poorly understood. Many pregnancy, delivery, and fetal risk factors have been considered, but targeted treatment and prevention efforts are still not possible. This thesis reviewed perinatal stroke and developed a diagnostic risk prediction model for PAIS. Pathophysiology, strategies for diagnosis, investigations, management, and outcomes were broken down by perinatal stroke disease, with an additional focus on family mental health and active trials for acute intervention. A diagnostic prediction model was then developed using novel, multisource data and multivariable logistic regression. Clinical pregnancy, delivery, and neonatal risk factors were collected from four registries including the Alberta Perinatal Stroke Project, Canadian Cerebral Palsy Registry, International Pediatric Stroke Study, and Alberta Pregnancy Outcomes and Nutrition study. Variable selection was based on peer-reviewed literature. The final model included nine clinical factors – maternal age, tobacco exposure, substance exposure, pre-eclampsia, chorioamnionitis, intrapartum maternal fever, emergency c-section, low 5-minute Apgar score, and male sex – to predict the risk of PAIS in a term neonate with good discrimination between cases and controls (C-statistic 0.73). This work highlights the lifelong effects of perinatal stroke on patients and families, and the potential for early perinatal stroke diagnosis. Findings suggest that clinical prediction and early, accurate diagnosis of PAIS may be possible using common clinical variables. Future research is needed to optimize risk prediction by better understanding perinatal stroke pathophysiology, including the role of the placenta, and identifying high-risk groups.Item Open Access Decannulation of Tracheostomy Tubes in Children and the Role of Polysomnogram in Predicting the Presence of Sleep Apnea(2024-07-05) Platt, Jody Marie; Samuel, Susan; Adeleye, Adetayo; Pendharkar, Sachin; Hagel, BrentTracheostomy tubes in children with complex respiratory conditions may eventually be removed. There is variation in practice among pediatric care teams including the use of polysomnography (PSG). This work reviewed global practices of tracheostomy decannulation and described local practice and outcomes. A scoping review was completed using PRISMA guidelines. Data were extracted from 52 articles and fit to the Donabedian Framework for quality assessment including: structure, process and outcome. Decannulations were done at tertiary care centers (51/52, 98%), but articles often lacked information about health care structure like multi-disciplinary care (only 4/52, 8% with information). Airway endoscopy was the most common investigation before decannulation (43/52, 83%) and PSG testing was reported as completed (27/52, 52%) in half of the studies. When Pulmonary physicians were involved, PSG was commonly included (14/23, 61%). Outcomes focused on decannulation success (43/52, 83%), and success was higher when PSG was done. While different approaches exist, common themes emerged. Original tracheostomy indication and the subspecialties of doctors involved may impact decannulation process including PSG use and outcomes considered. A descriptive study was performed using the database from the Complex Airway Clinic (CAC) in Calgary, Alberta and supplemented with electronic medical record data. The approach to decannulation was described and fifty-two children were identified with upper airway obstruction (UAO) (18/52, 35%), upper airway obstruction and craniofacial syndrome (UAO/SYN) (13/52, 25%), long-term ventilation (LTV) (12/52, 23%), and temporary (TEMP) (9/52, 17%). Details of structure, process and outcomes per the Donabedian Framework were abstracted from the medical records. Children attended the multi-disciplinary CAC and most children without a TEMP tracheostomy tube attended the Otolaryngology / Respirology Combined Clinic for decannulation planning (39/43, 91%). Most children without a temporary tracheostomy had a functional airway assessment (FAA) (31/43, 72%). Children with UAO/SYN (7/13, 54%) and LTV (7/12, 58%) had a PSG before decannulation. Decannulation was successful for 51 of 52 children (98%). There were 7 children with a completed PSG before and after decannulation and there was a moderate agreement (k=0.46) observed in obstructive sleep apnea severity between the studies. Further studies with a prospective multi-center design are required to determine the usefulness of pre-decannulation PSG to inform risk of tracheostomy decannulation including residual obstructive sleep apnea. The indication for tracheostomy tube insertion may help to determine the optimal approach to tracheostomy decannulation and protocol development.Item Open Access Development of the Strengths, Skills, and Goals Matrix: a tool for facilitating strengths-based adolescent and young adult engagement in research(2023-10-04) Allemang, Brooke; Patton, Megan; Greer, Katelyn; Pintson, Karina; Farias, Marcela; Schofield, Keighley; Samuel, Susan; Patten, Scott B.; Sitter, Kathleen C.; Dimitropoulos, GinaAbstract Background The involvement of adolescents and young adults (AYAs) with lived experience of health and mental health conditions as partners in research is increasing given the prominence of participatory approaches to research, including patient-oriented research (POR). Much of the relevant research is conducted by graduate students. While guiding AYA engagement frameworks and models exist, the processes of partnering with AYAs in patient-oriented graduate-level research projects have not been well established. Co-developed tools and practices are required to support strengths-based, developmentally appropriate AYA-graduate student partnerships. Objectives The objectives of this commentary are: (1) to share the processes of partnership between a graduate student and five Young Adult Research Partners (YARP), (2) to describe the co-design and implementation of the Strengths, Skills, and Goals Matrix (SSGM), a tool for facilitating strengths-based AYA engagement in research, and (3) to outline considerations for applying this tool across a variety of research contexts with patient partners. Main body Within the YARP-graduate student partnership, the SSGM offered extensive benefits, including tangible skill development, peer mentorship, and rapport building among all members. This tool offers strategies for strengths-based engagement practices which emphasize AYAs’ preferences and goals throughout POR projects. Practical recommendations and considerations for applying the SSGM within graduate-level research and beyond are described, including the importance of connecting AYAs’ current (and desired) skills to specific tasks within the research project and resulting outputs. Conclusions The SSGM has possible relevance in a variety of settings given its broadly applicable structure. Future research could explore the adaptation, application, and evaluation of the SSGM across research contexts to determine its feasibility and ease of implementation. Patient or public contribution This article was conceived of and co-authored by five young adult research partners. The YARP co-designed the SSGM presented in this article, the figures, and substantially contributed to the preparation of the article.Item Open Access Epidemiology of Perinatal Stroke(2021-06-18) Dunbar, Mary Jansen; Kirton, Adam; Hill, Michael; Coutts, Shelagh; Samuel, SusanPerinatal stroke is a collection of distinct clinicoradiographic syndromes resulting in injury to the developing brain between 20 weeks gestation and 28 days post-natal age. Perinatal stroke is the leading cause of hemiparetic cerebral palsy and also causes other adverse outcomes such as epilepsy and neurodevelopmental challenges, as well as significant economic burden and emotional burden for families. The birth prevalence was estimated to be between 1/1600 births and 1/3000 births depending on definitions and study methodology; however, no published study to date had evaluated all six subtypes of perinatal stroke birth prevalence to define their relative prevalence and other characteristics such as sex ratios and changes over time. Each subtype of perinatal stroke requires individual characterization of birth prevalence, risk factors and outcomes to better inform early diagnosis, treatment and prevention. Some subtypes of perinatal stroke such as neonatal arterial ischemic stroke have been well studied, while for others such as periventricular venous infarction (PVI), birth prevalence and risk factors remain unknown. In this thesis the birth prevalence of all six types of perinatal stroke was estimated using the Alberta Perinatal Stroke Project (APSP), a population-based registry of all types of perinatal stroke in Southern Alberta, Canada. We also compared retrospective methods using administrative data, and prospective methods using the APSP registry. Poisson regression was used to assess changes in annual birth prevalence over time. To further characterize PVI, a systematic review and individual patient data meta-analysis was conducted to consolidate data about antenatally-diagnosed germinal matrix intraventricular hemorrhage, which is believed to be the pathophysiology for PVI. Logistic regression was used to evaluate outcomes and co-occurring conditions. We found the highest estimated birth prevalence of perinatal stroke to date of 1/1100 births, which is a rate of one per day in Canada. In addition, novel insights were determined regarding the relative proportions and sex proportions of the stroke subtypes, including the finding that males with arterial ischemic stroke are more likely than females to present in the perinatal period. Periventricular venous infarction was found to be the second most common subtype of perinatal stroke, and systematic review and individual patient data meta-analysis demonstrated that the grading system developed for delivered preterm infants is relevant to fetuses and that outcome may be additionally influenced by gestational age at birth. In addition, a variety of co-occurring conditions were identified. This thesis presents an estimated birth prevalence of perinatal stroke that is higher than previously thought and posits that it must be calculated as a sum of the perinatal stroke subtypes. Our results set the stage for exciting new studies to better understand the role of sex in neonatal seizures as a presentation of brain injury, as well as established the groundwork for case-control studies of risk factors in periventricular venous infarction. Increased knowledge of epidemiology and understanding of risk factors is crucial to develop strategies for early diagnosis, treatment and ideally prevention of perinatal stroke.Item Open Access Health care stakeholder perspectives regarding the role of a patient navigator during transition to adult care(2019-06-17) Dimitropoulos, Gina; Morgan-Maver, Elizabeth; Allemang, Brooke; Schraeder, Kyleigh; Scott, Shannon D; Pinzon, Jorge; Andrew, Gail; Guilcher, Gregory; Hamiwka, Lorraine; Lang, Eddy; McBrien, Kerry; Nettel-Aguirre, Alberto; Pacaud, Daniele; Zwaigenbaum, Lonnie; Mackie, Andrew; Samuel, SusanAbstract Background Transition to adult care represents a vulnerable period for young people with special health care needs as they navigate multiple life transitions and developmental issues. Patient navigators are a promising intervention designed to facilitate the transfer from pediatric to adult care. However, consistent definitions, key tasks, roles and responsibilities are lacking in guiding the scope of practice and the implementation of patient navigators. Methods Fundamental qualitative description was utilized in this study to identify perceptions from health care providers about implementing a patient navigator service for young people with special health care needs in transition to adult care. A purposive sample of health care providers with a variety of backgrounds within pediatric and adult systems in Alberta, Canada were recruited. Semi-structured interviews with participants were analyzed using thematic analysis to inductively identify perceptions regarding the role of patient navigators. Results A total of 43 health care providers highlighted the need for a patient navigator service to encompass 4 key stages for young people with special health care needs transitioning from pediatric to adult services: (1) identification of young people with special health care needs and families requiring support, (2) preparation for transfer, (3) health system navigation and, (4) post-transfer support. Conclusions The results of this qualitative study provide guidance for the development of patient navigator interventions for young people with special health care needs, as well as provide support for current transition services offered across Canada.Item Open Access Patient experience and healthcare priorities in childhood steroid sensitive nephrotic syndrome(2021-09) Okpere, Augustina Nwaka; Samuel, Susan; Elliott, Meghan; King-Shier, Kathryn; Hamiwka, LorraineChildhood idiopathic steroid sensitive nephrotic syndrome (SSNS) is characterized by sudden and unexpected onset of body swelling, massive proteinuria and hypoalbuminemia. The chronic recurrent relapses and side effects of its treatment can impact patients’ and caregivers’ experiences of the disease. The aims of this qualitative study were to explore the experiences and healthcare priorities of children with SSNS and their caregivers. We interviewed 28 participants that comprised 10 children aged 9 to18 years (6 boys and 4 girls) and 18 caregivers over the internet on Microsoft Teams between January and April 2021. Using qualitative description and thematic analysis, we identified three themes related to the diagnostic journey of childhood nephrotic syndrome (unexpected distressing symptoms, elusiveness of diagnosis and confronting the diagnosis) and three themes related to the experiences of children living with SSNS and their caregivers (disruption of normalcy, regaining control and dependable social support system). Four actionable needs and care priorities of participants were identified: desire to be heard, understanding the cause of nephrotic syndrome, alleviating the burden of steroid regimen and enhanced social support availability. Our study provides insights into several strategies that healthcare professional could adopt to improve the diagnostic experience of children and their caregivers in search of a diagnosis of nephrotic syndrome and care of patients and their families. Also, our findings have the potential to inform the design and conduct of future research in priority setting and treatment of childhood SSNS.Item Open Access Perspectives from primary health care providers on their roles for supporting adolescents and young adults transitioning from pediatric services(2020-07-13) Schraeder, Kyleigh; Dimitropoulos, Gina; McBrien, Kerry; Li, Jessica Yijia; Samuel, SusanAbstract Background Transitioning from pediatric care to adult-oriented care at age 18 (the age of transfer in most countries and jurisdictions) is a complex process for adolescents and young adults affected by chronic physical health and/or mental health conditions. The role of primary health care (PHC) providers for this population is poorly understood. Perspectives from these providers, such as family physicians and other members of the primary care team, have not been explored in depth. Methods A total of 18 participants (e.g., family physicians, social workers, nurses) were recruited from 6 Primary Care Networks in Calgary, Alberta, Canada. Semi-structured individual interviews were conducted, and transcribed verbatim. A qualitative description approach was used to analyze the data, and included thematic analysis. Results Five distinct, yet overlapping, roles of primary health care providers for adolescents and young adults transitioning to adult care resulted from our analysis: (1) being the “common thread” (continuous accessible care); (2) caring for the “whole patient” (comprehensive care); (3) “knowing families” (family-partnered care); (4) “empowering” adolescents and young adults to develop “personal responsibility” (developmentally-appropriate care); and (5) “quarterbacking” care (coordination of specialist and/or community-based care). Participants identified potential benefits of these roles for adolescents and young adults transitioning to adult care, and barriers in practice (e.g., lack of time, having minimal involvement in pediatric care). Conclusions Input from family physicians, who follow their patients across the lifespan and provide the majority of primary care in Canada, are critical for informing and refining recommended transition practices. Our findings provide insights, from PHC providers themselves, to bolster the rationale for primary care involvement during transitions from pediatric specialty and community-based care for AYAs. Solutions to overcome barriers for integrating primary care and specialty care for adolescents and young adults need to be identified, and tested, with input from key stakeholders.Item Open Access Primary care during the transition to adult care for adolescents involved with pediatric specialty services: a scoping review protocol(2021-02-02) Schraeder, Kyleigh; Allemang, Brooke; Scott, Cathie; McBrien, Kerry; Dimitropoulos, Gina; Felske, Ashley; Samuel, SusanAbstract Background Of the 15–20% of youth in North America affected by a chronic health condition (e.g., type 1 diabetes, cystic fibrosis) and/or mental health or neurodevelopmental disorder (e.g., depression, eating disorder, Attention Deficit-Hyperactivity Disorder), many often require lifelong specialist healthcare services. Ongoing primary care during childhood and into young adulthood is recommended by best practice guidelines. To date, it is largely unknown if, how, and when primary care physicians (PCPs; such as family physicians) collaborate with specialists as AYAs leave pediatric-oriented services. The proposed scoping review will synthesize the available literature on the roles of PCPs for AYAs with chronic conditions leaving pediatric specialty care and identify potential benefits and challenges of maintaining PCP involvement during transition. Methods Arksey and O’Malley’s original scoping review framework will be utilized with guidance from Levac and colleagues and the Joanna Briggs Institute. A search of databases including MEDLINE (OVID), EMBASE, PsycINFO, and CINAHL will be conducted following the development of a strategic search strategy. Eligible studies will (i) be published in English from January 2004 onwards, (ii) focus on AYAs (ages 12–25) with a chronic condition(s) who have received specialist services during childhood, and (iii) include relevant findings about the roles of PCPs during transition to adult services. A data extraction tool will be developed and piloted on a subset of studies. Both quantitative and qualitative data will be synthesized. Discussion Key themes about the roles of PCPs for AYAs involved with specialist services will be identified through this review. Findings will inform the development and evaluation of a primary-care based intervention to improve transition care for AYAs with chronic conditions.Item Embargo The Impact of a Patient Navigator on Readiness Assessment Scores in Youth Transitioning to Adult Health Care in Alberta(2024-07-01) Patton, Megan; Samuel, Susan; Dimitropoulos, Gina; Anthony, Samantha; Patten, ScottPurpose At 16-19 years of age, youth with chronic medical conditions transition from their pediatric specialist to an adult specialist. Youth often feel unprepared for this transfer of care making transition preparations crucial. Transition readiness assessments may have a role in guiding transition preparation. The Transition Readiness Assessment Questionnaire (TRAQ) is the most strongly validated readiness measurement, however, longitudinal examination of TRAQ scores is required to investigate the tool’s suitability to assist in a successful transition. Methods With a patient-oriented approach, this dissertation explored the impact of a patient navigator on TRAQ scores at three-time points within the Transition Navigator Trial (TNT). Transition Research Advisory Council (TRAC) members were partners in this work to highlight the perspectives, opinions, and expertise of those with lived experience of transitioning to the adult health care system. Guiding principles of patient-oriented research (POR) were applied to engage TRAC members meaningfully throughout all phases of the research. Special considerations must be made when engaging youth such as allowing for flexibility throughout the partnership, ample opportunities for mentorship, and reciprocal learning, as such the Youth Engagement Conceptual Model was implemented in conjunction with the guiding principles. This study used data collected as part of the TNT, a pragmatic randomized controlled trial testing the effectiveness of a patient navigator intervention for youth transitioning to adult healthcare. A total of 129 participants were included in this quantitative analysis. Comparisons between the control and intervention group were performed with a Mann-Whitney U test. A mixed-model analysis with random intercepts was used to explore the relationship between access to a patient navigator, time, and TRAQ scores. Results At baseline, there was no significant difference in mean TRAQ scores between the intervention and control group (β=0.05, p = 0.58, 95% CI -0.12, 0.22). Irrespective of treatment allocation, mean TRAQ scores did increase over time between both baseline to 12 months (β=0.54, p<0.001, 95% CI 0.44, 0.63), and baseline to 24 months (β =0.68, p<0.001, 95% CI 0.59, 0.78). In our sample alarmingly we note that only 56% of AYA were scoring > 4.0 (‘ready’ for transition as defined by the TRAQ) 24-months post enrollment into the study, which is between one to two years after their transition to adult care. Youth partners played a crucial role in providing insights into the study results, particularly in understanding the lack of significant findings. Discussion This study sought to examine the change in TRAQ scores in a longitudinal study between those assigned to a patient navigator intervention versus care as usual. We found that access to a patient navigator intervention did not significantly impact the rate of change in TRAQ scores. Our study underscores the criticality of partnering with youth in quantitative studies to ensure outcomes and analyses are relevant and impactful in addressing the needs of this population.Item Open Access “They go hand in hand”: a patient-oriented, qualitative descriptive study on the interconnectedness between chronic health and mental health conditions in transition-age youth(2023-01-02) Allemang, Brooke; Samuel, Susan; Pintson, Karina; Patton, Megan; Greer, Katelyn; Farias, Marcela; Schofield, Keighley; Sitter, Kathleen C.; Patten, Scott B.; Mackie, Andrew S.; Dimitropoulos, GinaAbstract Background Transition-age youth (TAY) with chronic health conditions frequently experience co-occurring mental health conditions. However, little is known about the perspectives of TAY with co-occurring diagnoses preparing to exit pediatric health and mental health services. Research is needed to understand the impact of a mental health condition on transition readiness and self-management in TAY with chronic health conditions. Methods TAY (aged 16–20 years) with co-occurring chronic health and mental health conditions were recruited in Alberta, Canada. Nine semi-structured individual interviews were completed by phone or videoconference, and transcribed verbatim. Guided by qualitative description, we analyzed the data using thematic analysis in partnership with five young adults with lived experience in the health/mental health systems. Results Participants shared their experiences living with simultaneous physical and mental health concerns and preparing for transition to adult care. Our analysis revealed three overarching themes: 1) “they’re intertwined”: connections between chronic health and mental health conditions in TAY, 2) impact of mental health on transition readiness and self-management, and 3) recommendations for service provision from the perspectives of TAY. Conclusions Our findings highlighted the myriad ways in which physical and mental health are connected as TAY prepare for service transitions using specific examples and powerful metaphors. TAY endorsed the importance of providers discussing these connections in routine clinical care. Future research should involve co-designing and evaluating educational material addressing this topic with diverse TAY, caregivers, and service providers.Item Embargo Understanding the Complexities of Transition Readiness in Adolescents and Emerging Adults with Chronic Health Conditions: A Mixed Methods Study(2024-05-31) Punjwani, Zoya; Samuel, Susan; Dimitropoulos, Gina; Metcalfe, Amy; Donald, MaoliosaBackground: The transition from pediatric to adult health care for adolescents and emerging adults (AEA) with chronic conditions is a complex time, associated with gaps in care, poor treatment adherence, and increases in emergency department (ED) visits. Various tools are available to assess AEA readiness to transition, such as the Transition Readiness Assessment Questionnaire (TRAQ). Research is needed to better understand the association between TRAQ scores and transition outcomes and identify gaps that remain in accurately and comprehensively assessing transition readiness. The objectives of this study were to quantitatively examine the associations between TRAQ scores and ED visit rates and utilization of a navigator intervention, as well as qualitatively explore the experiences of AEA related to social-ecological factors of transition readiness. Methods: A patient-oriented, embedded mixed methods study was conducted, with quantitative priority. This study was guided by the Social-Ecological Model of Adolescents and young adults’ Readiness to Transition (SMART) as identified by our patient partners. This model encompasses individual-level factors and the reciprocal interactions between AEA and their surrounding systems, including family, caregivers, healthcare providers, and medical system. Data was obtained from the Transition Navigator Trial (TNT), a pragmatic randomized controlled trial evaluating the effectiveness of a patient navigator for AEA undergoing transition from pediatric to adult healthcare in Alberta, Canada. Results: Quantitatively, higher TRAQ scores were associated with increased ED visit rates. A similar relationship was observed pre-pandemic, with higher TRAQ scores associated with higher navigator utilization. However, post-pandemic onset, higher TRAQ scores were associated with lower navigator utilization. TRAQ scores did not differ across sociodemographic factors such as age, sex, socioeconomic status, ethnicity, immigration status, urban/rural residence, and the presence of a co-occurring mental health condition. Qualitative results highlighted factors extending beyond what was assessed by TRAQ, including insurance barriers, psychosocial impacts of health condition, and the importance of relationships when undergoing transitions in care. Conclusion: This study underscored the multifaceted nature of transition readiness and the gaps in current readiness measures such as TRAQ. Patient partners advocated for improvements in readiness measures, developing recommendations regarding assessing insurance, mental health, skill development, contextual factors, and relationships in readiness measures.