Identifying Patients with Physician-Diagnosed Asthma in Health Administrative Databases

BACKGROUND: 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

Identifying Patients with Physician-Diagnosed Asthma in Health Administrative Databases

BACKGROUND: 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.OBJECTIVE: To evaluate the accuracy of population-based provincial health administrative data in identifying adult patients with asthma for ongoing surveillance and research.METHODS: 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.RESULTS: 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%).CONCLUSION: 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.Peer Reviewe

Trends in the epidemiology of childhood nephrotic syndrome in Africa: A systematic review.

Background 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. Methods 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. Findings 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. Interpretation 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 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

The rationale and design of Insight into Nephrotic Syndrome: Investigating Genes, Health and Therapeutics (INSIGHT): a prospective cohort study of childhood nephrotic syndrome

Abstract Background Nephrotic syndrome is one of the most commonly diagnosed kidney diseases in childhood and its progressive forms can lead to chronic kidney disease (CKD) and/or end-stage renal disease (ESRD). There have been few longitudinal studies among a multi-ethnic cohort to determine potential risk factors influencing disease susceptibility, treatment response, and progression of nephrotic syndrome. Temporal relationships cannot be studied through cross-sectional study design. Understanding the interaction between various factors is critical to developing new strategies for treating children with kidney disease. We present the rationale and the study design of a longitudinal cohort study of children with nephrotic syndrome, the Insight into Nephrotic Syndrome: Investigating Genes, Health and Therapeutics (INSIGHT) study. The specific aims are to determine: 1) socio-demographic, environmental, and genetic factors that influence disease susceptibility; 2) rates of steroid treatment resistance and steroid treatment dependence, and identify factors that may modify treatment response; 3) clinical and genetic factors that influence disease susceptibility and progression to CKD and ESRD; and 4) the interaction between the course of illness and socio-demographic, environmental, and clinical risk factors. Methods/design INSIGHT is a disease-based observational longitudinal cohort study of children with nephrotic syndrome. At baseline, participants complete questionnaires and provide biological specimen samples (blood, urine, and toenail clippings). Follow-up questionnaires and repeat biological specimen collections are performed annually for up to five years. Discussion The proposed cohort will provide the structure to test various risk factors predicting or influencing disease susceptibility, treatment response, and progression to CKD among children with nephrotic syndrome. Trial registration ClinicalTrials.gov Identifier NCT01605266

Parental Attitudes to Genetic Testing Differ by Ethnicity and Immigration in Childhood Nephrotic Syndrome: A Cross-Sectional Study

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 , NCT0160526

Parental attitudes to genetic testing differ by ethnicity and immigration in childhood nephrotic syndrome: a cross-sectional study

Abstract 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, NCT0160526