Asthma imposes a heavy and expensive burden on individuals and populations. A population-based surveillance and research program based on health administrative data could measure and study the burden ...of asthma; however, the validity of a health administrative data diagnosis of asthma must first be confirmed.
To evaluate the accuracy of population-based provincial health administrative data in identifying adult patients with asthma for ongoing surveillance and research.
Patients from randomly selected primary care practices were assigned to four categories according to their previous diagnoses: asthma, chronic obstructive pulmonary disease, related respiratory conditions and nonasthma conditions. In each practice, 10 charts from each category were randomly selected, abstracted, then reviewed by a blinded expert panel who identified them as asthma or nonasthma. These reference standard diagnoses were then linked to the patients' provincial records and compared with health administrative algorithms designed to identify asthma. Analyses were performed using the concepts of diagnostic test evaluation.
A total of 518 charts, including 160 from individuals with asthma, were reviewed. The algorithm of two or more ambulatory care visits and/or one or more hospitalization(s) for asthma in two years had a sensitivity of 83.8% (95% CI 77.1% to 89.1%) and a specificity of 76.5% (95% CI 71.8% to 80.8%).
Definitions of adult asthma using health administrative data are sensitive and specific for identifying adults with asthma. Using these definitions, cohorts of adults with asthma for ongoing population-based surveillance and research can be developed.
Background
Steroids and/or steroid-sparing medications are commonly used for nephrotic syndrome treatment; however, the impact of these medications on health-related quality of life over time is not ...well described.
Methods
Longitudinal cohort is up to 5 years where children were assessed with baseline and annual Pediatric Quality of Life Inventory questionnaire. A mixed-effects linear regression determined differences in scores among children receiving steroids and/or steroid-sparing agents for at least 30 days compared with those not on medication at 1, 3, 6, and 12 months prior to assessment.
Results
Among 295 children, 64% were male, with a median age of 3.7 (interquartile range IQR, 2.7, 5.9) years at diagnosis, and comprised 25% Europeans, 40% South Asians, and 8% East/Southeast Asians. Adjusted HRQOL scores were reduced among children taking steroids and steroid-sparing agents among 705 HRQOL measures (median 2 IQR, 1, 3 per child). Compared to children without medication, steroid and steroid-sparing agent use up to 12 months prior to assessment were associated with an overall HRQOL drop of 3.17 (95% confidence interval CI, − 5.25, − 1.08) and 3.18 (95% CI, − 5.24, − 1.12), respectively, after adjustment. Functioning domain scores were reduced by 4.41 points (95% CI, − 6.57, − 2.25) in children on steroids, whereas fatigue domain scores were reduced by 5.47 points (95% CI, − 9.28, − 1.67) in children on steroid-sparing agents after adjustment.
Conclusions
HRQOL is consistently decreased in children receiving steroids and steroid-sparing agents, with differential effects on functioning and fatigue. Counseling families on possible effects of prolonged treatment periods is important in the management of childhood nephrotic syndrome.
Ethnic differences in outcomes among children with nephrotic syndrome are unknown.
We conducted a longitudinal study at a single regional pediatric center comparing ethnic differences in incidence ...from 2001 to 2011 census data and longitudinal outcomes, including relapse rates, time to first relapse, frequently relapsing disease, and use of cyclophosphamide. Among 711 children, 24% were European, 33% were South Asian, 10% were East/Southeast Asian, and 33% were of other origins.
Over 10 years, the overall incidence increased from 1.99/100,000 to 4.71/100,000 among children ages 1-18 years old. In 2011, South Asians had a higher incidence rate ratio of 6.61 (95% confidence interval, 3.16 to 15.1) compared with Europeans. East/Southeast Asians had a similar incidence rate ratio (0.76; 95% confidence interval, 0.13 to 2.94) to Europeans. We determined outcomes in 455 children from the three largest ethnic groups with steroid-sensitive disease over a median of 4 years. South Asian and East/Southeast Asian children had significantly lower odds of frequently relapsing disease at 12 months (South Asian: adjusted odds ratio; 0.55; 95% confidence interval, 0.39 to 0.77; East/Southeast Asian: adjusted odds ratio; 0.42; 95% confidence interval, 0.34 to 0.51), fewer subsequent relapses (South Asian: adjusted odds ratio; 0.64; 95% confidence interval, 0.50 to 0.81; East/Southeast Asian: adjusted odds ratio; 0.47; 95% confidence interval, 0.24 to 0.91), lower risk of a first relapse (South Asian: adjusted hazard ratio, 0.74; 95% confidence interval, 0.67 to 0.83; East/Southeast Asian: adjusted hazard ratio, 0.65; 95% CI, 0.63 to 0.68), and lower use of cyclophosphamide (South Asian: adjusted hazard ratio, 0.82; 95% confidence interval, 0.53 to 1.28; East/Southeast Asian: adjusted hazard ratio, 0.54; 95% confidence interval, 0.41 to 0.71) compared with European children.
Despite the higher incidence among South Asians, South and East/Southeast Asian children have significantly less complicated clinical outcomes compared with Europeans.
There is a paucity of data on the rate of urological and vascular complications in very young children after kidney transplant. We conducted a study on the incidence and risk factors for early ...post‐transplant surgical complications in young recipients (<5 years) over three decades. The primary outcome was any urological or vascular complication within 30 days of transplant, and the secondary outcome was incidence rate of graft failure reported as per 1000 person‐years. Risk factors associated with surgical complications were analyzed by logistic regression. There were 22 (26.5%) complications in 21 children with vascular thrombosis being the most common complication. There was no significant difference in the number of complications in period 1 (1985‐1994) and period 2 (1995‐2014) (P=.1). The incidence rate of graft failure was higher in period 1 (IR 70.8, 95% CI 41.1, 121.9) compared to period 2 (IR 20.7, 95% CI 9.3, 46.0). Cumulative incidence of graft survival at 1, 3, and 5 years' post‐transplant was 96.5%, 92.6%, and 90%, respectively, in those without compared to 71%, 65.1%, and 58.6%, respectively, in children with complications. In conclusion, early surgical, especially vascular, complications are quite common in young renal transplant recipients and lead to significantly reduced graft survival.
Background
Stage IV gastric cancer is lethal, and little population-based research on prognostic factors has been performed in low-incidence countries. Therefore, we investigated the consistency of ...the associations of patient, disease and healthcare system factors identified in previous population-based research to understand their generalizability to other low-incidence populations.
Methods
A population-based, retrospective cohort study of patients diagnosed with Stage IV gastric cancer in Ontario between 1 April 2005 and 31 March 2008 was performed. Kaplan-Meier methodology and the log-rank test were used for bivariate analysis. Multivariate Cox proportional hazard regression was performed. Hazard ratios (HRs) and 95 % confidence intervals (CIs) are presented.
Results
On multivariate analysis, patient, disease and healthcare system factors were independent predictors of survival. Increasing age per 10 years (HR 1.07; 95 % CI 1.02–1.10), a tumor located in the gastroesophageal junction (HR 1.09; 95 % CI 0.94–1.27) or middle of the stomach (HR 1.14; 95 % CI 0.97–1.35), presence of carcinomatosis (HR 1.61; 95 % CI 1.42–1.83) and a larger burden of metastatic disease (2–3 sites of metastatic disease: HR 1.17; 95 % CI 1.03–1.32; ≥4 sites: HR 1.69; 95 % CI 1.30–2.20) were associated with worse prognosis. Female gender, receipt of surgery, chemotherapy and radiotherapy and treatment from a high-volume, gastric cancer specialist were all associated with significantly better prognosis. In addition, there was evidence of significant geographic variation in survival.
Conclusion
This study provides supporting evidence for patient, disease and healthcare system prognostic factors in metastatic gastric cancer. Future work investigating the role of emerging molecular and biologic information will need to take these established prognostic factors into consideration.
BACKGROUND.Cancer risk is elevated among adult transplant recipients, but there is limited data regarding long-term cancer risk and mortality in pediatric recipients.
METHODS.We conducted a ...population-based retrospective cohort study in Ontario, Canada. We included pediatric recipients of solid organ transplants at the Hospital for Sick Children, Toronto, from 1991 to 2014, and compared rates of new cancers and cancer-specific mortality to nontransplanted Ontario children born in the same year. We constructed standard and time-dependent Cox proportional hazards models accounting for competing risk of death.
RESULTS.A total of 951 recipients (kidney, n = 400; liver, n = 283; heart, n = 218; lung, n = 36; multiorgan/small bowel, n = 14) were compared with 5.3 million general population children. Mean (SD) age was 8.2 (6.4) years; 50% were male. Over a mean (SD) follow-up of 10.8 (7.1) years, cumulative incidence of cancer was 20% in recipients and 1.2% in the general population (incidence rate ratio, 32.9; 95% confidence interval CI, 26.6–40.8). Risk was highest in the first year posttransplant (adjusted hazard ratio aHR,176; 95% CI, 117–264), but remained elevated beyond 10 years (aHR, 10.8; 95% CI, 6.3–18.6). Lymphoproliferative disorders were predominant (77%); however, solid cancers (renal, sarcomas, genital, thyroid) were seen. Recipients of lung or multiorgan transplants were at highest risk. Cancer-specific mortality was also higher among recipients (HR, 93.1; 95% CI, 59.6–145.2).
CONCLUSIONS.Childhood transplant recipients have a 30 times greater cancer incidence versus the general population. Further investigation is needed to guide screening strategies in this at-risk population.
Childhood nephrotic syndrome, if left untreated, leads to progressive kidney disease or death. We quantified the prevalence of steroid-sensitive nephrotic syndrome, steroid-resistant nephrotic ...syndrome, and histological types as the epidemiology of nephrotic syndrome in Africa remains unknown, yet impacts outcomes.
We searched MEDLINE, Embase, African Journals Online, and WHO Global Health Library for articles in any language reporting on childhood nephrotic syndrome in Africa from January 1, 1946 to July 1, 2020. Primary outcomes included steroid response, biopsy defined minimal change disease, and focal segmental glomerulosclerosis (FSGS) by both pooled and individual proportions across regions and overall.
There were 81 papers from 17 countries included. Majority of 8131 children were steroid-sensitive (64% 95% CI: 63–66%) and the remaining were steroid-resistant (34% 95% CI: 33–35%). Of children biopsied, pathological findings were 38% 95% CI: 36–40% minimal change, 24% 95% CI: 22–25% FSGS, and 38% 95% CI: 36–40% secondary causes of nephrotic syndrome.
Few African countries reported on the prevalence of childhood nephrotic syndrome. Steroid-sensitive disease is more common than steroid-resistant disease although prevalence of steroid-resistant nephrotic syndrome is higher than reported globally. Pathology findings suggest minimal change and secondary causes are common. Scarcity of data in Africa prevents appropriate healthcare resource allocation to diagnose and treat this treatable childhood kidney disease to prevent poor health outcomes.
Funding was provided by the Canadian Institute for Health Research (CIHR) and the National Institute of Health (NIH) for the H3 Africa Kidney Disease Research Network. This research was undertaken, in part, from the Canada Research Chairs program.
•There are scarce data on childhood nephrotic syndrome across Africa with only 31% of African countries reporting.•Mean age of diagnosis of childhood nephrotic syndrome was 7.3 years which is higher than reported in Europeans and Asians•Most children (64%) have steroid sensitive disease and access to steroids and repeated courses is needed•About 34% of children are steroid resistant and need access to second line medications•Kidney biopsy should occur more often in African children as the proportion with secondary causes is much higher
Background:
Studies in the USA report differences in opinion among parents of different ethnic groups toward genetic testing for their child; however, there are no studies that address this issue in ...the diverse ethnic and immigrant population in Canada.
Objective:
This study aims to determine whether ethnicity and immigration status influences parental interest in clinical genetic testing for a potentially progressive kidney disease.
Design:
This is a cross-sectional study.
Setting:
Participants were recruited from the Greater Toronto Area, Canada.
Participants:
The study included 320 parents of children ages 1–18 years with nephrotic syndrome enrolled in the Insight into Nephrotic Syndrome: Investigating Genes, Health and Therapeutics (INSIGHT) observational cohort study.
Measurements:
Demographic, ethnicity, immigration, and child specific factors as well as interest in genetic testing were collected through self-reported questionnaires administered at baseline study visit.
Methods:
Logistic regression models were used to examine association of ethnicity and immigration status with interest in genetic testing.
Results:
The majority of parents (85 %) were interested in genetic testing for their child. South Asian and East/Southeast Asian parents had 74 and 76 % lower odds of agreeing to genetic testing when compared to Europeans (odds ratio (OR) 0.26, 95 % confidence interval (CI) 0.10–0.68; OR 0.24, 95 % CI 0.07–0.79, respectively) after controlling for age and sex of child, age and education level of parent, initial steroid resistance, and duration of time in Canada. Immigrants to Canada also had significantly lower odds (OR 0.29, 95 % CI 0.12–0.72) of agreeing to genetic testing after similar adjustment. Higher education level was not associated with greater interest in genetic testing (OR 1.24, 95 % CI 0.64–2.42).
Limitations:
Participants have already agreed to aggregate genetic testing for research purposes as part of enrolment in INSIGHT study.
Conclusion:
While majority of parents were interested in genetic testing for their child, immigrants, particularly South Asians and East/Southeast Asians, were more likely to decline genetic testing. Genetic counseling needs to be tailored to address specific concerns in these parental groups to maximize informed decision-making in the clinical setting.
Trial registration:
ClinicalTrials.gov, NCT01605266
Children with nephrotic syndrome are at risk of obesity and growth impairment from repeated steroid treatment. However, incidence and risk factors for obesity and short stature remain uncertain, ...which is a barrier to preventative care. Our aim was to determine risk, timing, and predictors of obesity and short stature among children with nephrotic syndrome.
We evaluated obesity and longitudinal growth among children (1-18 years) enrolled in Insight into Nephrotic Syndrome: Investigating Genes, Health, and Therapeutics. We included children with nephrotic syndrome diagnosed between 1996-2019 from the Greater Toronto Area, Canada, excluding congenital or secondary nephrotic syndrome. Primary outcomes were obesity (body mass index Z-score ≥ + 2) and short stature (height Z-score ≤ -2). We evaluated prevalence of obesity and short stature at enrolment (< 1-year from diagnosis) and incidence during follow-up. Cox proportional hazards models determined the association between nephrotic syndrome classification and new-onset obesity and short stature.
We included 531 children with nephrotic syndrome (30% frequently relapsing by 1-year). At enrolment, obesity prevalence was 23.5%, 51.8% were overweight, and 4.9% had short stature. Cumulative incidence of new-onset obesity and short stature over median 4.1-year follow-up was 17.7% and 3.3% respectively. Children with frequently relapsing or steroid dependent nephrotic syndrome within 1-year of diagnosis were at increased risk of new-onset short stature (unadjusted hazard ratio 3.99, 95%CI 1.26-12.62) but not obesity (adjusted hazard ratio 1.56, 95%CI 0.95-2.56). Children with ≥ 7 and ≥ 15 total relapses were more likely to develop obesity and short stature, respectively.
Obesity is common among children with nephrotic syndrome early after diagnosis. Although short stature was uncommon overall, children with frequently relapsing or steroid dependent disease are at increased risk of developing short stature. Effective relapse prevention may reduce steroid toxicity and the risk of developing obesity or short stature.
Background
With improved survival among children after transplantation, our understanding of the risk for developing other comorbidities is improving, yet little is known about the long-term risk of ...cardiovascular events and mortality after solid organ transplantation.
Methods
In a cohort study using health administrative data, we compared cardiovascular events in children (
n
= 615) with liver, lung, kidney, small bowel, or multi-organ transplant at the Hospital for Sick Children, Toronto, Canada, with asthmatic children (
n
= 481,697) between 1996 and 2014. Outcomes included non-fatal cardiovascular events, cardiovascular death, all-cause mortality, and a composite of non-fatal and fatal cardiovascular events. Time-stratified Cox proportional hazards models were used.
Results
Among 615 children, 317 (52%) were recipients of kidneys, 253 (41%) of livers, and the remaining 45 (7%) had lung, small bowel, or multi-organ transplants. Median follow-up was 12.1 7.2, 16.7 years. Non-fatal incident cardiovascular events were 34 times higher among solid organ transplant recipients than non-transplanted children (incidence rate ratio (IRR) 34.4, 95% CI: 25.5, 46.4). Among transplant recipients, the cumulative incidence of non-fatal and fatal cardiovascular events was 2.3% and 13.0%, 5 and 15 years after transplantation, respectively.
Conclusions
Increased rate of cardiovascular events in children after transplantation highlights the need for surveillance during transition into adulthood and beyond.
Graphical abstract
A higher resolution version of the Graphical abstract is available as
Supplementary information
.