Winnipeg Children's Hospital Research Articles

P651 Barriers to clinical research in children with inflammatory bowel disease: the patients' perspective

Background: Recruitment for clinical research in paediatric inflammatory bowel disease (IBD) could be difficult. Patients' willingness to participate in clinical research is affected by several factors including research-related, patient-related and disease-related factors. Understanding the nature of barriers to recruitment for clinical studies is important for better planning of future research. Data on barriers for recruiting children with IBD to clinical studies are limited. The aim of this study was to examine possible barriers for clinical research in children with IBD from patients' perspective Methods: In a cross-sectional single center paediatric study, children with IBD or their care givers when appropriate were surveyed via a questionnaire that addressed patients'/parents' willingness to participate in clinical studies and factors that may influence patients' willingness to participate. Univariate logistic regression analysis was used to examine any possible effect of factors such as disease nature, type of biological samples, and parental education on willingness to participate in clinical research. Results: Out of 96 children with IBD (mean age 13.9+ 2.78 years, 53 boys, 49 Crohn's disease (CD)) who were consecutively recruited in the Pediatric IBD clinic, Winnipeg Children's Hospital, Winnipeg, Manitoba, 84 (87.5%) were “definitely or probably” willing to participate in clinical research while 12 (12.5%) were neutral or unwilling to participate (p<0.01). Factors associated with increased willingness to participate included providing research blood (OR=2.1, 95% CI 1.2–4.1, p=0.03) and urine (OR=2.04, 95% CI 1.03–4.1, p=0.04) samples but not stool samples (OR=1.3, 95% CI 0.73–2.47, p=0.3) or endoscopy (OR=1.45, 95% CI 0.83–2.56, p=0.19). Patients with CD were more willing to participate (OR=3.27, 95% CI 1.11–9.66, p=0.03). Parents' education, income, age at diagnosis, money incentive, disease activity and medications such as immunosuppressive or biological medications at the time of the survey did not have any significant effect on willingness to participate. Conclusions: The majority of children with IBD are willing to participate in clinical research especially in studies that include blood and urine sample collection but not stool samples or endoscopy. Children with Crohn's disease are more likely to participate in research studies.

Can Latent Class Analysis Be Used to Improve the Diagnostic Process in Pediatric Patients with Chronic Ataxia?

Chronic ataxia is a relatively common symptom in children. There are numerous causes of chronic ataxia, making it difficult to derive a diagnosis in a timely manner. We hypothesized that the efficiency of the diagnostic process can be improved with systematic analysis of clinical features in pediatric patients with chronic ataxia. Our aim was to improve the efficiency of the diagnostic process in pediatric patients with chronic ataxia. A cohort of 184 patients, aged 0-16years with chronic ataxia who received medical care at Winnipeg Children's Hospital during 1991-2008, was ascertained retrospectively from several hospital databases. Clinical details were extracted from hospital charts. The data were compared among the more common diseases using univariate analysis to identify pertinent clinical features that could potentially improve the efficiency of the diagnostic process. Latent class analysis was then conducted to detect unique patterns of clinical features and to determine whether these patterns could be associated with chronic ataxia diagnoses. Two models each with three classes were chosen based on statistical criteria and clinical knowledge for best fit. Each class represented a specific pattern of presenting symptoms or other clinical features. The three classes corresponded to a plausible and shorter list of possible diagnoses. For example, developmental delay and hypotonia correlated best with Angelman syndrome. Specific patterns of presenting symptoms or other clinical features can potentially aid in the initial assessment and diagnosis of pediatric patients with chronic ataxia. This will likely improve the efficiency of the diagnostic process.

Cardioembolic Stroke in Children: A Clinical Presentation and Outcome Study

BackgroundCardiac disease is a common cause of ischemic stroke in children. Limited information is available about its incidence and long-term outcome. MethodsWe undertook a retrospective study of children (age 0-17 years) with cardioembolic arterial ischemic stroke, occurring between 1992 and December 2007. Study subjects were observed at the Winnipeg Children's Hospital and identified using multiple databases and disease code searches. ResultsWe identified 84 children with arterial ischemic stroke, 17 (20%) of which were cardioembolic stroke (15 non-neonates; 10 females; mean age 4.6 years). The crude annual incidence rate for cardioembolic stroke was estimated to be 0.39 and mortality rate of 0.046 per 100,000 person-years. Stroke occurred commonly in children <5 years (65%) and during hospitalization (65%). Initial presenting symptoms were focal deficits 12 (71%), altered consciousness 5 (29%), seizures 5 (29%), and headache 3 (18%). The mean stroke severity measured by Pediatric National Institutes of Health Stroke Scale was 14.5 (range 2-40) at presentation and 3.7 (range 0-9) at discharge, with mean acute recovery from stroke presentation to discharge of 9.94 (0-32). At 2 years, poor outcome was evident in 10 (59%) children: 2 or >2 Pediatric Stroke Outcome Measure score in 6 (35%), death in 2 (12%), and recurrent stroke in 2 (12%). Factors associated with poor outcome included headache (P = 0.048), high Pediatric National Institutes of Health Stroke Scale at presentation (r = 0.57; P = 0.05) and discharge (r = 0.58; P = 0.05), and high Pediatric Stroke Outcome Measure at discharge (r = 0.77; P = 0.0008). ConclusionOur cohort provides hospital-based incidence estimates for children with cardioembolic stroke. Pediatric National Institutes of Health Stroke Scale performed at different time points can be a helpful tool in measuring stroke recovery and needs to be further explored.

The epidemiology of intermittent and chronic ataxia in children in Manitoba, Canada

To determine the epidemiology of chronic ataxia in children in Manitoba, Canada. A retrospective study using multiple sources and disease codes identified children (age 0-16y) with chronic ataxia (>2mo duration or recurrent episodes of ataxia) seen at Winnipeg Children's Hospital from 1991 to 2008. Patients with isolated peripheral nerve diseases, vestibular disorders, or brain tumors were excluded. We identified 184 patients (males=females; mean age 15y, SD 7y 8mo) with chronic ataxia. Median age at the presenting symptom onset was 1 year 3 months and at ataxia onset 3 years 1 month. Median duration of follow-up was 6 years 5 months. During the study period, the crude incidence rate was 5.77 in 10,000; the crude prevalence rate was 6.59 in 10,000; and the crude mortality rate 0.446 in 10,000. The most common presenting symptoms were developmental delay, ataxia, or seizures. The most common diagnoses (known in 129) were Angelman syndrome (n=16), ataxia telangiectasia (n=13), mitochondrial disease (n=9), Friedreich ataxia (n=7), stroke (n=7), and familial/genetic episodic ataxia (n=7). Chronic ataxia is a relatively common early-presenting symptom in childhood. A specific diagnosis is possible in 70% of patients after extensive investigations. The mortality rate is relatively low and the disease burden is high with significant comorbidities including developmental delay and epilepsy.

Epidemiology of severe pediatric adenovirus lower respiratory tract infections in Manitoba, Canada, 1991-2005

BackgroundMost pediatric adenovirus respiratory infections are mild and indistinguishable from other viral causes. However, in a few children, the disease can be severe and result in substantial morbidity. We describe the epidemiologic, clinical, radiologic features and outcome of adenovirus lower respiratory tract infections (LRTI) in Aboriginal and Non-Aboriginal children in Manitoba, Canada during the years 1991 and 2005.MethodsThis was a retrospective study of 193 children who presented to the department of pediatrics at Winnipeg Children's Hospital, Manitoba, Canada with LRTI and had a positive respiratory culture for adenovirus. Patients' demographics, clinical and radiologic features and outcomes were collected. Adenovirus serotype distributions and temporal associations were described. Approximate incidence comparisons (detection rates) of adenovirus LRTI among Aboriginal and Non-Aboriginal children were estimated with 95% confidence intervals.ResultsAdenovirus infections occurred throughout the year with clusters in the fall and winter. Serotypes 1 to 3 were the predominant isolates (two thirds of the cases). The infection was more frequent among Canadian Aboriginals, as illustrated in 2004, where its incidence in children 0-4 years old was 5.6 fold higher in Aboriginals (13.51 vs. 2.39 per 10,000, p < 0.000). There were no significant differences in length of hospitalization and use of ventilator assistance between the two groups (p > 0.185 and p > 0.624, respectively) nor across serotypes (p > 0.10 and p > 0.05, respectively). The disease primarily affected infants (median age, 9.5 months). Most children presented with bronchiolitis or pneumonia, with multi-lobar consolidations on the chest x-ray. Chronic (residual) changes were documented in 16 patients, with eight patients showing bronchiectasis on the chest computerized tomography scan.ConclusionsAdenovirus infection is associated with significant respiratory morbidities, especially in young infants. The infection appears to be more frequent in Aboriginal children. These results justify a careful follow-up for children with adenovirus LRTI.

The Concept of Surgical Assessment: Part 1 – Introduction

Assessing competency in surgery is an age-old tradition. In the infancy of surgical practice the issue of competency in surgical skills was addressed by the Royal College of Surgeons of Edinburgh, one of the oldest surgical organisations. Competency in surgical skills has taken on an added urgency in contemporary practice because of several high-profile public enquiries into underperforming surgeons, such as the Bristol children's heart surgery affair in the UK, the paediatric cardiac surgery programme at Winnipeg Children's Hospital, Canada, and the Bundaberg Hospital affair in Australia.

Jack Bowman: Winnipeg's Contributions to the Treatment and Prevention of Rhesus Hemolytic Disease of the Newborn

Jack Bowman (1925-2005) was a Canadian pediatrician who was on the staff of the Winnipeg Children's Hospital. He was trained by Bruce Chown who had started the Rhesus (Rh) hemolytic disease of the Newborn program and in due course succeeded Chown as director of the program. Jack began as one of the three pediatricians (including his twin Bill) who performed exchange transfusions on the affected infants. In due course with his colleague in obstetrics, he was the first in North America to perform intrauterine transfusions for the babies at risk of stillbirth. He was a leader in the prevention of Rh disease by the administration of anti-Rh immunoglobulin to the Rh-negative mothers and established that this could be done safely and effectively during pregnancy. He introduced to North America the column fractionation method of preparing the immunoglobulin that produced a higher yield of a purer product that could be given intravenously. Jack Bowman successfully combined research with clinical practice throughout his career.

OBJECTIVE VS. SUBJECTIVE: THE CHALLENGE OF CLEAR DOCUMENTATION OF RANGE OF MOTION

To the editors of Physiotherapy Canada: After reading the editorial “Objective versus Subjective: Kudzu Terminology” in the Spring 2008 edition of Physiotherapy Canada, we were inspired to share a recent experience with so-called “objective” measurement. At the Winnipeg Children's Hospital, physiotherapists (PTs) and occupational therapists (OTs) work closely together on the Hand and Rheumatology Services. While reviewing our patient documentation practices, we learned that the OTs used a system of recording joint range of motion (ROM) that differed from the practice the PTs were using. After discussing the merits and limitations of both methods, we decided to survey our departmental colleagues regarding whether a standard or preferred method of recording ROM existed in their clinical practice. Interestingly, we found within our Pediatric PT and OT departments that plus (+) and minus (−) signs were used to denote both limitation of extension and joint hyperextension; however, there was no agreement among us regarding which sign should be used to denote each clinical finding! Intrigued, we decided to explore this documentation discordance outside of our department. We consulted textbooks,1–4 emailed PT and OT colleagues across the country, consulted with faculty members at the University of Manitoba, examined the American Society of Hand Therapy guidelines,5 and reviewed protocols from two large multi-centre studies.6,7 We undertook this exercise in an attempt to facilitate consistent and reliable measurement and recording of ROM within our hospital.

There's a Bug in Your Head

Because I was born, raised, and educated in Toronto, my exposure to First Nations people and cultures was limited to what little attention was paid them by the mainstream media and the educational system. When I became an intern and resident in a downtown hospital, the familiar stereotypes were reinforced by encounters with homeless adult Natives, many with substance abuse problems. I confess to not giving aboriginal issues in medicine and in Canada much thought. All that changed when I moved to Winnipeg to practice as a pediatric neurosurgeon at Winnipeg Children's Hospital. Winnipeg has a larger aboriginal population than any other major city in Canada, and First Nations people make a significant contribution to its cultural and artistic vibrancy. For the first time in my career, I encountered First Nations children on a daily basis. One of my new patients was a seven-year-old boy named Timmy. He lived on a remote reserve several hours from Winnipeg, accessible only by air. Timmy had suffered headaches for a few weeks and was starting to develop weakness in his left arm and leg. CT and MRI scans revealed a large cystic tumor in his upper brainstem extending into his right thalamus. Despite his headaches, Timmy was a happy, active child. He spoke Oji-Cree and very little English and seemed to want nothing to do with me until I showed him I could wiggle my nose just like he could. I met with Timmy's mother to explain the nature of Timmy's brain tumor, propose surgery, and discuss the potential risks and expected recovery time. Parents usually react to a talk like this with a mixture of fear, anger, and grief. They often question why this happened to their child. But for the most part, Timmy's mom seemed unconcerned with these issues. Her questions threw me off guard. They didn't have hot water in their small house on the reserve--could I help them get it? What about an indoor toilet? As a matter of fact, maybe I could write to the authorities and stress that they needed a new house altogether. My first reaction was disbelief--this woman seemed more concerned about material things than the health of her son. But over the next days and weeks, I began to understand that these were legitimate questions from a woman anxious not just about the welfare of her sick child (though she clearly was deeply worried about this), but also about the welfare of her entire family. Her questions implied a fear of being unable to adequately care for a child who could be quite sick for a long time in conditions where it was hard enough to raise healthy children. …

Orthopedic injuries associated with backyard trampoline use in children: G.B. Black, R. Amadeo. Can J Surg 46:199–201, (June), 2003

Trampolining on an outdoor oval or circular trampoline is a popular activity for children but is associated with a number of orthopedic injuries, especially in children between the ages of 5 and 15 years. In this paper we review the orthopedic injuries in children associated with backyard trampoline use, through our experience with a series of children admitted to the Winnipeg Children's Hospital, the only tertiary care pediatric centre in Manitoba.We reviewed the charts, x-ray films and operative reports for 80 children under 16 years old (mean 9 yr, with 14 [18%] children between 2 and 4 yr) with an orthopedic injury sustained when using a trampoline in the backyard. We noted the mechanism of injury and type and severity of orthopedic injury sustained.Fifty-two (65%) children were injured on the trampoline mat, and 24 (30%) were injured when they were ejected from the trampoline. Sixty (75%) children sustained a fracture or fracture-dislocation. Forty-eight (80%) orthopedic injuries occurred in the upper extremity. No child died as a result of a trampoline injury.The use of the "backyard" trampoline by young children can cause significant orthopedic injury.

Pediatric trauma registries: The foundation of quality care

Background/Purpose: Traumatic injuries cause substantial morbidity and mortality in children. Trauma registries are essential to assess and improve standards of trauma care. An interprovincial study of pediatric trauma between 6 centers across Canada who use identical software components was completed. Methods: Data were collected from April 1, 1995 to December 31, 1998 for children aged 1 day to 17 years with an injury severity score of ≥12. Cause of injury, injury time and day, gender, age, injury scores, length of hospital stay, and outcomes were compared. Results: A total of 1,276 patients were included. Mean age was 10.3 ± 5.6 years. Motor vehicle collisions were the most common mechanism of injury (56%). Boys were more often injured (66%; P <.05). Injuries occurred mainly between 1600 and 2400 hours (P <.0001). Mean hospital stay was 11.5 ± 16.6 days. The longest stays in the hospital were among those who had an abdominal abbreviated injury score (AIS) of 1 (P ≤.03). Patients with similar injury severities remained twice as long in Winnipeg Children's Hospital (hospital 5), hospital 2, and hospital 6 as compared with patients in hospital 3 (P <.05). Differences existed in discharge placement between hospitals (P <.0001). Conclusions: This study was the first to compare pediatric patients in multiple Canadian centers using identical trauma registries. Variations in length of stay and discharge placements between hospitals were identified. Further analysis of data in the registries may clarify these differences and serve as a foundation for hospitals to improve the quality of patient care. J Pediatr Surg 36:685-689. Copyright © 2001 by W.B. Saunders Company.

Acceptability and usefulness of vaginal washes in premenarcheal girls as a diagnostic procedure for sexually transmitted diseases. The Child Protection Centre at the Winnipeg Children's Hospital.

To assess the suitability of vaginal washes as specimens for sexually transmitted disease diagnosis and determine the usefulness of PCR technology for Chlamydia trachomatis diagnosis in prepubertal girls. Paired sets of vaginal secretions were collected with swabs and by vaginal wash from 138 prepubertal girls for evaluation because of alleged sexual abuse. Detection by culture of Neisseria gonorrhoeae and C. trachomatis was compared between the two sampling techniques. PCR techniques were also used to test 29 vaginal wash specimens for C. trachomatis. In the prepubertal girls N. gonorrhoeae was detected in two wash specimens but in only one swab specimen; C. trachomatis was detected by culture in both paired specimens from two children and by PCR in vaginal washes from both of the two children positive by culture; PCR identified two other infected children. A vaginal wash technique coupled with newer molecular amplification technology may be useful in the assessment of sexually abused children.

Pediatric anesthesia morbidity and mortality in the perioperative period

One of the most frequent questions asked of a pediatric anesthesiologist is "What are the risks of anesthesia for my child?" Unfortunately, few studies have examined the consequences of general anesthesia in children. We used data from a large pediatric anesthesia follow-up program at Winnipeg Children's Hospital (1982-1987) to determine rates of perioperative adverse events among children of different ages. A check-off form was completed by a pediatric anesthesiologist for each case (n = 29,220) and a designated follow-up reviewer examined all anesthesia forms and hospital charts to ascertain adverse effects for children less than 1 mo, 1-12 mo, 1-5 yr, 6-10 yr, and 11-16 yr of age in the intraoperative, recovery room, and postoperative periods. The majority of the children were healthy, and 70% had no preoperative medical conditions. Infants less than 1 mo old were more likely to be undergoing major cardiac or vascular procedures, whereas the older children had mainly orthopedic or otolaryngologic procedures. Infants less than 1 mo old had the highest rate of adverse events both intraoperatively and in the recovery room. The main problem in this age group was related to the respiratory and cardiovascular systems. In children over 5 yr of age, postoperative nausea and vomiting was very frequent, with about one-third of the children experiencing this problem. When all events were considered (both major and minor), there was a risk of an adverse event in 35% of the pediatric cases. This contrasts with 17% for adults. This morbidity survey helps to focus on areas of intervention and for further study.

Long-term effects of neonatal bone and joint infection on adjacent growth plates.

Review of children with physeal damage from neonatal infection other than the hip at Winnipeg Children's Hospital showed that six patients had residual growth interference from adjacent infection in the bone or joint. Several of the infections involved multiple joints, with growth plate arrest occurring in the distal femoral growth plate in four, in the proximal humerus in four, in the proximal femur in two, in the distal radius in one, and in the distal humerus in one. Although the initial infection was frequently believed to be successfully treated in the neonate, the clinical effect of these infections on the growth plate was not fully appreciated in five of the infants until the children reached a mean age of 9 years. Because growth abnormalities in physeal bars may not be clinically evident for several years after the initial infection has been treated, we recommend that children with bone and joint infections occurring in the first month of life be followed to skeletal maturity, observing the adjacent physis for late tethering.

Rigid bronchoscopy in the pediatric age group: Diagnostic effectiveness

Over a 15-year period, 277 diagnostic bronchoscopic procedures were carried out at the Winnipeg Children's Hospital using rigid bronchoscopic instrumentation. The objective of the review is to examine contribution to final diagnosis made by the procedure. The patient population included 60% male and 40% female patients ranging from the first day of life to 18 years (mean age, 6 years). Indications for bronchoscopy fell into two large groups, including 60% of patients with evidence of lower airway disease and 30% of patients with evidence of upper airway obstruction. In patients with upper airway obstruction, half were found to have a congenital underlying cause and half were due to an acquired lesion. In 85% of patients, a specific diagnosis was reached and this proved to correlate positively with the preoperative diagnosis in 80% of patients and negatively in 20%. Definitive treatment in patients with upper airway obstruction included surgical intervention in one third of patients. Patients with lower airway disease were diagnosed as having consolidation in 43%, atelectasis in 39%, and bronchiectasis in 18%. Disease localized most frequently to the left lower and right upper lobes and in only 10 of 168 patients was a congenital cause determined. Among 168 patients, 30 had surgical treatment as the definitive management with the majority of patients treated medically. Bronchoscopy was shown to contribute to diagnosis in 88% of patients examined. Bronchoscopy was carried out with a complication rate of 3% and no mortality.

Pediatric renal biopsy in the ambulatory care environment.

The use of pediatric ambulatory care facilities to perform invasive procedures that have low morbidity is increasingly popular. Over a 2-year period, 46 pediatric renal biopsies were performed in an ambulatory care setting at the Winnipeg Children's Hospital, with the patient discharged the same day. There was no serious complications and adequate tissue was obtained in 45 cases. Renal biopsy may be safely performed on an outpatient basis on carefully selected patients by experienced operators in properly equipped facilities.

Pediatric Anesthesia Morbidity and Mortality in the Perioperative Period

One of the most frequent questions asked of a pediatric anesthesiologist is "What are the risks of anesthesia for my child?" Unfortunately, few studies have examined the consequences of general anesthesia in children. We used data from a large pediatric anesthesia follow-up program at Winnipeg Children's Hospital (1982-1987) to determine rates of perioperative adverse events among children of different ages. A check-off form was completed by a pediatric anesthesiologist for each case (n = 29,220) and a designated follow-up reviewer examined all anesthesia forms and hospital charts to ascertain adverse effects for children less than 1 mo, 1-12 mo, 1-5 yr, 6-10 yr, and 11-16 yr of age in the intraoperative, recovery room, and postoperative periods. The majority of the children were healthy, and 70% had no preoperative medical conditions. Infants less than 1 mo old were more likely to be undergoing major cardiac or vascular procedures, whereas the older children had mainly orthopedic or otolaryngologic procedures. Infants less than 1 mo old had the highest rate of adverse events both intraoperatively and in the recovery room. The main problem in this age group was related to the respiratory and cardiovascular systems. In children over 5 yr of age, postoperative nausea and vomiting was very frequent, with about one-third of the children experiencing this problem. When all events were considered (both major and minor), there was a risk of an adverse event in 35% of the pediatric cases. This contrasts with 17% for adults. This morbidity survey helps to focus on areas of intervention and for further study.

Pediatric day-care surgery: A 30-year hospital experience

Over a 30-year period (may 1955 to December 1985), day care surgery was performed on 39,654 patients at the Winnipeg Children's Hospital (WCH). Up to 51% of all pediatric surgical cases and 59% of elective pediatric cases, involving more than 50 different procedures, were performed annually on a day-care basis. The overall incidence of postoperative problems and admission to hospital was 1.5% and 1.1%, respectively. A unique preoperative home visiting program by nurses was demonstrably effective in reducing late cancellations by 75%. The WCH experience adds further evidence that day-care surgery in a pediatric hospital is safe and effective for a large proportion of infants and children requiring operation.

Programming for special groups through closed-circuit television.

At Winnipeg's Children's Hospital Television (CHTV), there was concern that the closed-circuit alternative television station was not realizing its full potential in helping to meet the special needs of the adolescent and native Canadian patients. Consequently, CHTV hired workers to produce programming targeted at these two groups. This article documents the underlying philosophy and structure of this programming. It also discusses how other children's health care institutions might adapt this kind of programming to suit their own groups with special needs.

The "floating knee" in children.

The term "floating knee" describes the flail joint resulting from fractures of the shaft or adjacent metaphyseal region of the ipsilateral femur and tibia; we have reviewed 15 children with this combined injury seen at the Winnipeg Children's Hospital. All had been involved in motor vehicle accidents, eight having been struck while cycling; the biomechanics of such an injury have also been studied. Treatment is difficult and the regimes varied. Results were poor when both fractures were treated nonoperatively and we recommend that at least one of the fractures should be rigidly fixed.