Kathy N Speechley

Kathy N Speechley
The University of Western Ontario | UWO · Department of Paediatrics

PhD

About

153
Publications
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Publications

Publications (153)
Article
Full-text available
Scales currently validated to assess severity of chronic physical conditions in children are not well suited for limited-resource settings as they lack ease of use and interpretation. This study assessed the validity of the Global Assessment of Severity of Illness (GASI), a single-item scale designed for quick and simple assessment of illness sever...
Article
Purpose Health-related quality of life (HRQL) is compromised in children with epilepsy. We aimed to determine whether children diagnosed with epilepsy between ages 4-12 years exposed to a higher number of anti-seizure medication (ASM) over the first 2 years after diagnosis have poorer HRQL 10 years after diagnosis. Methods Data were obtained from...
Article
Objective To develop an Arabic translation of the Quality of Life in Children with Epilepsy-55 questionnaire (QOLCE-55), and to assess its validity and reliability to be readily used in Arabic and Egyptian cultures. Subjects and methods The original English version of the QOLCE-55 was translated into Arabic using a forward–backward translation met...
Article
Parents of trans and gender-diverse youth can experience challenges navigating gender-affirming (GA) care such as stigma, transphobia, and lack of support. There is little information available about stressors, worries, and positive feelings of parents as they try to support their youth accessing GA care. This article presents baseline survey data...
Article
Full-text available
Introduction Children with inherited metabolic diseases (IMDs) often have complex and intensive healthcare needs and their families face challenges in receiving high-quality, family centred health services. Improvement in care requires complex interventions involving multiple components and stakeholders, customised to specific care contexts. This s...
Article
Background and objectives: Referrals of transgender and gender-diverse (trans) youth to medical clinics for gender-affirming care have increased. We described characteristics of trans youth in Canada at first referral visit. Methods: Baseline clinical and survey data (2017-2019) were collected for Trans Youth CAN!, a 10-clinic prospective cohort...
Article
Background: Early hospital discharge shifts the recovery burden toward the patient and can leave patients and their caregivers anxious about the recovery process. Postoperative home care must be broadened to include appropriate and adequate support to address recovery at home. In this prospective study, patient and caregiver perspectives on the le...
Article
Background With increasing psychiatric hospitalizations among adolescents and constrained hospital resources, there are times when youth are hospitalized in adult inpatient psychiatry units. Evidence on the prevalence of this practice and associated impacts is lacking. Aims We sought to explore the prevalence, determinants, and outcomes related to...
Article
Background and objective: Children with inherited metabolic diseases often require complex and highly specialized care. Patient and family-centered care can improve health outcomes that are important to families. This study aimed to examine experiences of family caregivers (parents/guardians) of children diagnosed with inherited metabolic diseases...
Article
Objective To examine longitudinal changes and predictors of depression and anxiety 2 years following resective epilepsy surgery, compared to no surgery, in children with drug-resistant epilepsy (DRE). Method This multicenter cohort study involved 128 children and adolescents with DRE (48 surgical, 80 nonsurgical; 8–18 years) who completed self-rep...
Article
Full-text available
BACKGROUND: Epilepsy extends far beyond seizures; up to 80% of children with epilepsy (CWE) may have comorbid cognitive or mental health problems, and up to 50% of parents of CWE are at risk for major depression. Past research has also shown that family environment has a greater influence on children's and parents' health-related quality of life (...
Article
Objective: To prospectively delineate self-reported health-related quality of life (HRQOL) of adolescents and young adults (AYAs) 8 and 10 years after an epilepsy diagnosis and evaluate the degree of AYA-parent agreement in ratings of AYA's HRQOL. Methods: Data came from the Health-Related Quality of Life in Children with Epilepsy Study (HERQULES...
Article
Purpose: The objective of this study was to delineate the long-term impact of pediatric convulsive status epilepticus (CSE) on health-related quality of life (HRQOL) in children recently diagnosed with epilepsy. Methods: Children with newly-diagnosed epilepsy were recruited between 2004-2007 through a Canada-wide population-based study, the Heal...
Article
Objective This study estimated trajectories of health‐related quality of life (HRQOL) over a 10‐year period among children newly diagnosed with epilepsy. We also modeled the characteristics of children, parents, and families associated with each identified trajectory. Methods Data came from the HERQULES (Health‐Related Quality of Life in Children...
Article
Full-text available
Purpose: To generate foundational knowledge in the creation of a quality-of-life instrument for patients who are clinically diagnosed as being in a vegetative or minimally conscious state but are able to communicate by modulating their brain activity (i.e., behaviourally nonresponsive and covertly aware). The study aimed to identify a short list o...
Article
This commentary is on the original article by Kesselmayer et al. on pages 587–592 of this issue.
Article
Objective: To validate the parent-proxy reported Quality of Life in Childhood Epilepsy Questionnaire (QOLCE) in a sample of young adults with a history of childhood-onset epilepsy, allowing for the utilization of a consistent informant (the parent) across the youths’ stages of development. The 55-item (QOLCE-55) and 16-item version (QOLCE-16) were...
Article
Aim: To identify important explanatory variables of four patient-reported outcomes (PROs): vision-related quality of life (VRQoL), preference-based health-related quality of life (HRQoL), social support and community integration and depressive symptoms. Methods: Cross-sectional study conducted at one ophthalmic practice in a hospital setting. Pa...
Article
Aim: To determine whether epilepsy surgery improved health-related quality of life (HRQoL) and whether seizure freedom after surgery mediated the improvement in HRQoL. Method: This multicenter cohort study compared HRQoL after epilepsy surgery to pharmacological management in children with drug-resistant epilepsy (DRE). HRQoL was measured using...
Article
There is limited information about the effectiveness of transition programs for youth moving from pediatric to adult care with any chronic disease. Two Delphi studies and National Institute for Health and Care Excellence (NICE) guidelines about transition for epilepsy have suggested few critical outcome measures for transition. A single large prosp...
Article
Aim To describe fatigue in Duchenne muscular dystrophy (DMD) from patients’ and parents’ perspectives and to explore risk factors for fatigue in children and adolescents with DMD. Method A multicentre, cross‐sectional study design was used. Seventy‐one patients (all males; median age 12y, age range 5–17y) identified via the Canadian Neuromuscular...
Article
Objectives: This review aimed to describe social outcomes in adulthood for people with a history of childhood-onset epilepsy (PWE) and identify factors associated with these outcomes. Focused on educational attainment, employment, income/financial status, independence/living arrangement, romantic relationships, parenthood, and friendships. Methods...
Article
Objective: Parental depression significantly impacts children’s health and well‐being. This study aimed to (1) estimate the prevalence of depressive symptoms, at six time points, among mothers over the first 10 years after their child was diagnosed with epilepsy; (2) identify trajectories of maternal depressive symptoms over time; and (3) identify...
Article
Objective The aim of this study was to assess measurement equivalence in the 16-item short-form Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-16) across age, sex, and time in a sample of children with newly diagnosed epilepsy. Methods Data came from 373 children participating in the Health-related Quality of Life in Children with Epil...
Poster
Background: Longitudinal data on health-related quality of life (HRQOL) and fatigue in paediatric Duchenne muscular dystrophy (DMD) are limited. Recently, fatigue was reported to be the greatest predictor of poor HRQOL in paediatric DMD. Understanding the trajectory of HRQOL and its relationship with fatigue may facilitate the development of improv...
Article
Full-text available
Purpose: Epilepsy in childhood extends far beyond seizures and affects child and parental well-being. The long-term impact of childhood-onset epilepsy on parental well-being is unknown. This study assessed health-related quality of life (HRQOL) in mothers 10 years after their child’s diagnosis of epilepsy. Methods: Data come from the Health-Relat...
Article
Objectives: This systematic review aimed to 1) describe the quality of life (QOL) of parents of children with childhood-onset epilepsy (CWE), 2) identify factors associated with parental QOL, and 3) evaluate the association between parents' QOL and children's psychological well-being. Methods: We conducted a comprehensive search of MEDLINE, EMBASE...
Article
Objective: The aim of this study was to develop and validate a brief version of the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE). A secondary aim was to compare the results described in previously published studies using the QOLCE-55 with those obtained using the new brief version. Methods: Data come from 373 children involved in...
Article
Full-text available
Objectives Methodologically, to assess the feasibility of participant recruitment and retention, as well as missing data in studying mental disorder among children newly diagnosed with chronic physical conditions (ie, multimorbidity). Substantively, to examine the prevalence of multimorbidity, identify sociodemographic correlates and model the infl...
Article
Full-text available
Objectives To investigate if an association exists between being born large for gestational age (LGA) and verbal ability or externalizing behaviour problems at ages 4-5 years. Method A secondary analysis was conducted using the National Longitudinal Survey of Children and Youth, including singleton births in 2004-2005 followed till 4-5 years (n =...
Article
Objective: Diagnosis of epilepsy is known to impact health-related quality of life (HRQOL) of children with new-onset epilepsy and can also influence their conceptualization and valuation of HRQOL construct, also known as response shift. This study investigates the presence of response shift in a cohort of children with new-onset epilepsy. Method...
Article
The diagnosis of epilepsy in children is known to impact the trajectory of their health-related quality of life (HRQOL) over time. However, there is limited knowledge about variations in longitudinal trajectories across multiple domains of HRQOL. This study aims to characterize the heterogeneity in HRQOL trajectories across multiple HRQOL domains a...
Article
Aim: This study investigated the relationship between quality of life (QoL) and health-related quality of life (HRQoL) and assessed factors other than health that contribute to differences in QoL in young males with Duchenne muscular dystrophy (DMD). Method: In this cross-sectional study, QoL and HRQoL measures were completed by 98 parents and 8...
Article
Objective: Our objective was to examine the relationships of factors associated with children's emotional well-being 2 years after diagnosis, and to examine if these relationships are mediated or moderated by family factors. Methods: Data came from a multicenter prospective cohort study of children with newly diagnosed epilepsy from across Canad...
Article
Objective: Patients with epilepsy (PWE) are more likely to have unmet healthcare needs than the general population. This systematic review assessed the reasons for unmet needs in PWE. Methods: Medline, Embase, PsycINFO, Cochrane, and Web of Science databases were searched using keywords relating to unmet healthcare needs, treatment barriers, and...
Poster
Background: Fatigue is frequent and disabling in adults with neuromuscular disorders, but not well characterized in paediatric neuromuscular disorders. Recently, fatigue was reported to be associated with poor health-related quality of life in children with Duchenne muscular dystrophy (DMD). Determinants of fatigue—a modifiable symptom—have not bee...
Article
Objective: The aim of this study was to validate the newly developed shortened Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55) in a sample of children with drug-resistant epilepsy. Methods: Data came from 136 children enrolled in the Impact of Pediatric Epilepsy Surgery on Health-Related Quality of Life Study (PEPSQOL), a multicen...
Article
Full-text available
Background We sought to understand the experiences of parents/caregivers of children with inherited metabolic diseases (IMD) in order to inform strategies for supporting patients and their families. We investigated their experiences regarding the management of disease, its impact on child and family life, and interactions with the health care syste...
Article
Objectives: Fever is a common reason for an emergency department visit and misconceptions abound. We assessed the effectiveness of an interactive Web-based module (WBM), read-only Web site (ROW), and written and verbal information (standard of care [SOC]) to educate caregivers about fever in their children. Methods: Caregivers in the emergency d...
Article
Objective: The objective was to test whether the five-domain structure of the Measure of Processes of Care (MPOC-20) was observed in a sample of children with epilepsy and, if not, to propose adaptations to improve its utility in this population. Methods: Data came from the Health-Related Quality of Life in Children with Epilepsy Study (HERQULES...
Article
Objective: Health-related quality of life (HRQL) is compromised in children with epilepsy. The current study aimed to identify correlates of HRQL in children with drug resistant epilepsy. Methods: Data came from 115 children enrolled in the Impact of Pediatric Epilepsy Surgery on Health-Related Quality of Life Study (PEPSQOL), a multicenter pros...
Article
This study investigated clinical and family characteristics associated with health-related quality of life in children with Duchenne muscular dystrophy. Families of 176 boys with Duchenne muscular dystrophy were identified and mailed questionnaires via the Canadian Neuromuscular Disease Registry. Multiple linear regressions analyses were used to ex...
Article
Background: The current state of research into antenatal anxiety is lacking in a comprehensive understanding of determinants. This study aims to expand knowledge in this area, with the main objective being to determine potential determinants of maternal antenatal state-anxiety. Methods: Data used for this cross-sectional study were obtained from...
Article
Objective: The aim of this study was to examine measurement equivalence of the newly developed Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55) across age, sex, and time in a representative sample of children with newly diagnosed epilepsy. Methods: Data come from 373 children enrolled in the Health-related Quality of Life in Childr...
Article
Objective: The Global Assessment of Severity of Epilepsy (GASE) Scale is a single-item, 7-point global rating scale designed for neurologist-report of overall severity of epilepsy in children. Building on previous preliminary evidence of its validity and reliability for research and clinical use, this study evaluated the GASE Scale's construct val...
Article
In pediatric chronic illness, improving health-related quality of life (HRQOL) has become one of the most important goals of disease management. Duchenne muscular dystrophy (DMD) is a debilitating, progressive and chronic neuromuscular disorder affecting boys. The purpose of this review is to provide an overview of published research on HRQOL in th...
Article
Full-text available
Patient-centered health care for children with inborn errors of metabolism (IEM) and their families is important and requires an understanding of patient experiences, needs, and priorities. IEM-specific patient groups have emerged as important voices within these rare disease communities and are uniquely positioned to contribute to this understandi...
Article
Full-text available
BACKGROUND Fever is currently the most common reason for an emergency department (ED) visit. Parental concerns regarding dehydration and seizures, lead to significant anxiety and ED visits. With rapid advances in software development and Internet access, web-based modules (WBMs) are a feasible way to educate parents. Studies using educational WBMs...
Article
Our objectives were: (1) to examine the association between maternal, fetal, and placental phenotypes of preterm delivery and medically indicated early delivery of singletons during the late preterm and early term periods; and (2) to identify the specific maternal, fetal, and placental conditions associated with these early deliveries. Retrospectiv...
Article
Full-text available
Improvement of health-related quality of life (HRQOL) is a major goal in chronic disease management and HRQOL has become an important outcome in clinical trials. Longitudinal data on HRQOL are needed to elucidate change over time and to assess effectiveness of interventions; such research is lacking in the paediatric Duchenne Muscular Dystrophy (DM...
Article
Full-text available
Recent research suggests that a minority of patients diagnosed as vegetative using traditional behavioral assessments may be covertly aware. One of the most pressing concerns with respect to these patients is their welfare. This article examines foundational issues concerning the application of a theory of welfare to these patients, and develops a...
Article
Objective To develop and validate a shortened version of the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE). A secondary aim was to compare baseline risk factors predicting health-related quality of life (HRQoL) in children newly diagnosed with epilepsy, as identified using the original and shortened version.Methods Data came from the...
Article
Full-text available
Introduction: Nearly all children in Canada with an inherited metabolic disease (IMD) are treated at one of the country's Hereditary Metabolic Disease Treatment Centres. We sought to understand the system of care for paediatric IMD patients in Canada in order to identify sources of variation and inform future research priorities. Methods: Treatm...
Article
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Background: Improvements in health care for children with chronic diseases must be informed by research that emphasizes outcomes of importance to patients and families. To support a program of research in the field of rare inborn errors of metabolism (IEM), we conducted a broad scoping review of primary studies that: (i) focused on chronic pediatri...
Article
Objective Our aim was to examine the association between biological determinants of preterm birth (infection and inflammation, placental ischaemia and other hypoxia, diabetes mellitus, other) and spontaneous late preterm (34–36 weeks) and early term (37–38 weeks) birth.DesignRetrospective cohort study.SettingCity of London and Middlesex County, Can...
Article
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Objectives: Pyrroline-5-carboxylate synthase catalyzes the bio-synthesis of proline, ornithine and arginine. Its deficiency (P5CSD) is characterized by neurological and connective tissue abnormalities. Less than 10 cases have been reported, with abnormal amino acid profile in only one family. Two new cases will be described here. Methods: A literat...
Article
Objective: To elucidate the role of gestational age in determining the risk of poor developmental outcomes among children born late preterm (34-36 weeks) and early term (37-38 weeks) versus full term (39-41 weeks) by examining the contribution of gestational age to these outcomes in the context of proximal social processes. Methods: This was an...
Article
Objectives: The objective of this study was to examine the association between convulsive status epilepticus (CSE) and health-related quality of life (HRQL) during a 24-month follow-up in a multisite incident cohort of children with epilepsy. Methods: Data were collected in the Health-Related Quality of Life Study in Children with Epilepsy Study...
Article
Full-text available
Background Patient outcome after serious brain injury is highly variable. Following a period of coma, some patients recover while others progress into a vegetative state (unresponsive wakefulness syndrome) or minimally conscious state. In both cases, assessment is difficult and misdiagnosis may be as high as 43%. Recent advances in neuroimaging sug...
Article
African, Caribbean, and other Black (ACB) people are a priority group for HIV prevention in Canada, but little is known about condom use in this population. This exploratory community-based research project addresses this gap in knowledge. 125 sexually active ACB people completed a questionnaire covering condom use and social determinants of health...
Article
Full-text available
The aim of this study was to elucidate the role of gestational age in determining the risk of neonatal morbidity among infants born late preterm (34-36 weeks) and early term (37-38 weeks) compared with those born full term (39-41 weeks) by examining the contribution of gestational age within the context of biological determinants of preterm birth....
Article
Little is known about subgroups of children with epilepsy who may experience less favorable outcomes over time. The objectives of this study were to document trajectories of health-related quality of life (HRQL) and to identify predictors of the trajectory group in children with new-onset epilepsy. Data were obtained from the Health Related Quality...
Article
The measurement properties of two new scales designed to measure global and engagement mentoring relationship quality (Global Mentoring Relationship Quality Scale and Quality of Mentoring Relationship Engagement Scale) were examined among 272 mentors, 491 children, and 554 parents participating in Big Brothers Big Sisters community mentoring progra...
Conference Paper
Available from: http://ww2.aievolution.com/acm1301/index.cfm?do=abs.viewAbs&abs=1312
Article
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Background African, Caribbean and other Black (ACB) people are a priority group for HIV prevention in Canada, but little is known about the epidemiology of HIV risk in this population. This paper helps fill the knowledge gap by: presenting service providers’ and ACB people’s perceptions about HIV risk in ACB populations; describing the distribution...
Article
The objective of this study was to examine the factor structure and longitudinal measurement invariance of the Center for Epidemiological Studies Depression Scale (CES-D). The population-based sample included 347 adult women who had children participating in the Health-related Quality of Life in Children with Epilepsy Study. Longitudinal confirmato...
Article
Formal sexual education is a mandatory component of the high school curriculum in most Canadian provinces. The present study was a preliminary assessment of sexual knowledge among a sample of Ontario adolescents who had completed their high school sexual education requirements. A questionnaire, testing understanding of the learning objectives of On...
Article
Purpose: The present study investigated the higher-order summary factor structure of the Child Health Questionnaire Parent Form-50 (CHQ) in a sample of children with new-onset epilepsy. The secondary aim was to identify risk factors predicting health-related quality of life (HRQL) 24 months post-diagnosis. Methods: Data came from the Health-rela...
Article
Purpose: The aim of this study was to utilize bootstrapping to investigate the robustness of latent class trajectories and risk factors of depressive symptoms among mothers of children with epilepsy. Methods: Data were obtained from a national prospective cohort study (2004-09) of children newly diagnosed with epilepsy and their families in Cana...
Article
Objectives: To assess health-related quality of life (HRQL) over 2 years in children 4-12 years old with new-onset epilepsy and risk factors. Methods: Data are from a multicenter prospective cohort study, the Health-Related Quality of Life Study in Children with Epilepsy Study (HERQULES). Parents reported on children's HRQL and family factors and n...
Article
Full-text available
Objectives: To assess health-related quality of life (HRQL) over 2 years in children 4-12 years old with new-onset epilepsy and risk factors. Methods: Data are from a multicenter prospective cohort study, the Health-Related Quality of Life Study in Children with Epilepsy Study (HERQULES). Parents reported on children's HRQL and family factors an...