Impact of childhood nephrotic syndrome on obesity and growth: a prospective cohort study.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Reducing Unnecessary Imaging in Children With Multicystic Dysplastic Kidney or Solitary Kidney.

BACKGROUND AND OBJECTIVES: Children with isolated unilateral multicystic dysplastic kidney (MCDK) or congenital solitary kidney (CSK) undergo serial renal ultrasonography with variable frequency until they are transitioned to adult care. A growing body of literature suggests the value of frequent ultrasonography in this population is limited, providing no benefit to overall outcomes. Despite emerging evidence, ultrasound remains overused, resulting in avoidable health care expenditures and unnecessary use of resources. With our initiative, we aimed to improve quality of care by reducing avoidable ultrasounds in these children. METHODS: This was a single-center, prospective, interrupted time series of children <18 years with ultrasound-confirmed isolated unilateral MCDK or CSK in the outpatient nephrology clinic to evaluate the effect of a decision-making algorithm on the proportion of children receiving an avoidable ultrasound. An algorithm depicting a consensus, evidence-based protocol for managing pediatric MCDK or CSK was refined through content expert feedback and usability testing to standardize frequency of ultrasonography. Ultrasounds were deemed necessary after birth, at 6 months, and at 2, 5, 10, and 15 years. Differences pre- and postintervention were determined by using a U chart and t and F tests for significance. RESULTS: The algorithm resulted in a 47% reduction (P < .001) in the proportion of avoidable ultrasounds ordered in children with MCDK and CSK. This reduction was sustainable over a 6-month period and would result in at least $46 000 annual savings. CONCLUSIONS: Introduction of a clinical decision-making algorithm was associated with a reduction in avoidable ultrasound testing. Improving adherence across providers may allow for an even more pronounced reduction.

Bladder and Bowel Dysfunction Network: Improving the Management of Pediatric Bladder and Bowel Dysfunction.

Lower urinary tract symptoms with constipation characterize bladder and bowel dysfunction (BBD). Due to high referral volumes to hospital pediatric urology clinics and time-consuming appointments, wait times are prolonged. Initial management consists of behavioral modification strategies that could be accomplished by community pediatricians. We aimed to create a network of community pediatricians trained in BBD (BBDN) management and assess its impact on care. METHODS: We distributed a survey to pediatricians, and those interested attended training consisting of lectures and clinical shadowing. Patients referred to a hospital pediatric urology clinic were triaged to the BBDN and completed the dysfunctional voiding symptom score and satisfaction surveys at baseline and follow-up. The Bristol stool chart was used to assess constipation. Results were compared between BBDN and hospital clinic patients. RESULTS: Surveyed pediatricians (n = 100) most commonly managed BBD with PEG3350 and dietary changes and were less likely to recommend bladder retraining strategies. Baseline characteristics were similar in BBDN (n = 100) and hospital clinic patients (n = 23). Both groups had similar improvements in dysfunctional voiding symptom score from baseline to follow-up (10.1 ± 4.2 to 5.6 ± 3.3, P = 0.01, versus 10.1 ± 4.2 to 7.8 ± 4.5, P = 0.02). BBDN patients waited less time for their follow-up visit with 56 (28-70) days versus 94.5 (85-109) days for hospital clinic patients (P < 0.001). Both groups demonstrated high familial satisfaction. CONCLUSIONS: Community pediatricians may require more knowledge of management strategies for BBD. Our pilot study demonstrates that implementing a BBDN is feasible, results in shorter wait times, and similar improvement in symptoms and patient satisfaction than a hospital pediatric urology clinic.

Prediction of Short- and Long-Term Outcomes in Childhood Nephrotic Syndrome.

INTRODUCTION: It is unknown whether steroid sensitivity and other putative risk factors collected at baseline can predict the disease course of idiopathic nephrotic syndrome in childhood. We determined whether demographic, clinical, and family reported factors at presentation can predict outcomes in idiopathic nephrotic syndrome. METHODS: An observational cohort of 631 children aged 1 to 18 years diagnosed with idiopathic nephrotic syndrome between 1993 and 2016 were followed up until clinic discharge, 18 years of age, end-stage kidney disease (ESKD), or the last clinic visit. Baseline characteristics were age, sex, ethnicity, and initial steroid sensitivity. Of these, 287 (38%) children also reported any family history of kidney disease, preceding infection, microscopic hematuria, and history of asthma/allergies. The outcomes were complete remission after initial steroid course, need for a second-line agent, frequently relapsing disease, and long-term remission. The discriminatory power of the models was described using the c-statistic. RESULTS: Overall, 25.7% of children had no further disease after their initial steroid course. In addition, 31.2% developed frequently relapsing disease; however, 77.7% were disease-free at 18 years of age. Furthermore, 1% of children progressed to ESKD. Logistic regression modeling using the different baseline exposures did not significantly improve the prediction of outcomes relative to the observed frequencies (maximum c-statistic, 0.63; 95% confidence interval [CI], 0.59-0.67). The addition of steroid sensitivity did not improve outcome prediction of long-term outcomes (c-statistic, 0.63; 95% CI, 0.54-0.70). CONCLUSIONS: Demographic, clinical, and family reported characteristics, specifically steroid sensitivity, are not useful in predicting relapse rates or long-term remission in idiopathic nephrotic syndrome. Further studies are needed to address factors that contribute to long-term health.

Early life environment and social determinants of cardiac health in children with congenital heart disease.

Congenital heart disease is a significant cause of infant mortality. Epidemiology and social context play a crucial role in conditioning disease burden and modulating outcomes, while diagnosis and treatment remain resource intensive. This review will address the role of social demographics, environmental exposure, epigenetics and nutrition in the aetiology of congenital heart disease. We then discuss the determinant effect of social factors on the provision and outcomes of care for congenital heart disease and implications for practice. It is our hope that enhanced knowledge of the intersection of social determinants of health and congenital heart disease will facilitate effective preventative strategies at the individual and population levels to optimize heart health outcomes across the life course.

Identification of early childhood caries in primary care settings.

Early childhood caries (ECC) is the most common chronic disease affecting young children in Canada. ECC may lead to pain and infection, compromised general health, decreased quality of life and increased risk for dental caries in primary and permanent teeth. A multidisciplinary approach to prevent and identify dental disease is recommended by dental and medical national organizations. Young children visit primary care providers at regular intervals from an early age. These encounters provide an ideal opportunity for primary care providers to educate clients about their children's oral health and its importance for general health. We designed an office-based oral health screening guide to help primary care providers identify ECC, a dental referral form to facilitate dental care access and an oral health education resource to raise parental awareness. These resources were reviewed and trialled with a small number of primary care providers.

Parental Health Literacy and Outcomes of Childhood Nephrotic Syndrome.

OBJECTIVE: Determine the association of parental health literacy with treatment response among children with nephrotic syndrome. METHODS: This was a cohort study of children aged 1-18 with nephrotic syndrome and their parent. Health literacy was measured using the validated Short Test of Functional Health Literacy in Adults assessing reading comprehension and numeracy. Outcomes included initial relapse-free period, frequently relapsing disease, relapse rate, second-line medication use, and complete remission after therapy. RESULTS: Of 190 parents, 80% had adequate health literacy (score >67 of 100), and higher scores were not correlated with higher education. Almost all achieved perfect numeracy scores (>86%); numeracy was not associated with outcomes. After adjusting for immigration, education, and income, higher reading comprehension scores (tertile 3) compared with lower scores (tertile 1) were significantly associated with lower risk of first relapse (hazard ratio 0.67, 95% confidence interval [CI] 0.48-0.94, P trend = .02), lower odds of frequently relapsing disease (odds ratio [OR] 0.38, 95% CI 0.21-0.70, P trend = .002), lower relapse rate (rate ratio 0.77, 95% CI 0.73-0.80, P trend < .001), and higher odds of complete remission after both initial steroids and cyclophosphamide (OR 2.07, 95% CI 1.36-3.16, P trend = .003; OR 5.97, 95% CI 2.42-14.7, P trend < .001). CONCLUSIONS: Lower parental health literacy, specifically reading comprehension, is associated with higher relapse rates among children with nephrotic syndrome and fewer achieving complete remission. This underscores the importance of assessing and targeting health literacy for chronic management of childhood-onset diseases.

Ethnic Differences in Incidence and Outcomes of Childhood Nephrotic Syndrome.

BACKGROUND AND OBJECTIVES: Ethnic differences in outcomes among children with nephrotic syndrome are unknown. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: 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. RESULTS: 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. CONCLUSIONS: Despite the higher incidence among South Asians, South and East/Southeast Asian children have significantly less complicated clinical outcomes compared with Europeans.

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, NCT01605266.

MISE EN CONTEXTE: Des études aux États-Unis font état de différences d'opinions parmi les parents provenant de différentes origines ethniques quant à la possibilité de procéder à des tests de dépistage génétique sur leurs enfants. Toutefois il n'existe aucune étude qui traite de cette question au sein des différents groupes ethniques au Canada. OBJECTIFS DE L'ÉTUDE: L'étude avait pour but de vérifier si l'origine ethnique ou le statut d'immigrant des parents influençait leur façon d'aborder la question du dépistage génétique pour la détection d'une néphropathie potentiellement évolutive chez leur enfant. CADRE ET TYPE D'ÉTUDE: Cette étude transversale s'est tenue dans la grande région de Toronto au Canada. PARTICIPANTS: Il s'agit de 320 parents d'enfants âgés de 1 à 18 ans atteints d'un syndrome néphrotique qui participaient à l'étude de cohorte observationnelle INSIGHT (Insight into Nephrotic Syndrome: Investigating Genes Health and Therapeutics). MESURES: Les données soit la répartition démographique l'origine ethnique ou le statut d'immigrant des parents, les éléments propres à l'enfant ainsi que le niveau d'intérêt des parents à l'égard des tests de dépistage génétique, ont été colligées à partir d'un questionnaire remis aux parents lors de la première visite. MÉTHODOLOGIE: Des modèles de régression logistique ont été utilisés pour établir un parallèle entre l'origine ethnique ou le statut d'immigrant d'un parent et son intérêt à soumettre son enfant à un dépistage génétique. RÉSULTATS: La majorité des participants à l'étude (85 %) démontrait un intérêt envers la possibilité de soumettre leur enfant à un test de dépistage génétique. Toutefois dans le cas précis des gens originaires de l'Asie du Sud et de ceux provenant de l'Extrême-Orient ou de l'Asie du Sud-Est, les probabilités de consentir à un tel test étaient respectivement de 74 % et de 76 % plus faibles que pour les gens d'origine européenne. (Risque relatif [RR] : 0,26 à 95 % d'intervalle de confiance [IC] : 0.10-0.68; RR : 0,24 à 95 % IC : 0.07-0.79 respectivement). Ces résultats ont été obtenus après l'exclusion d'indicateurs relatifs à l'âge et au sexe de l'enfant, au sexe et au niveau d'éducation des parents, à la résistance de l'enfant au traitement initial par les stéroïdes et à la durée du séjour au Canada. Cette observation s'est également confirmée chez les immigrants reçus, pour qui la probabilité de consentir à un tel test pour leur enfant s'est aussi avérée significativement moins élevée après l'application des mêmes correctifs (RR : 0,29, à 95 % IC : 0.12-0.72). Aucune corrélation n'a pu être établie entre le niveau d'éducation élevé des parents et un intérêt accru à soumettre leur enfant à un test de dépistage génétique (RR : 1,24 à 95 % IC : 0.64-2.42). LIMITES DE L'ÉTUDE: Les résultats sont limités du fait que les participants avaient consenti à soumettre leur enfant à un test de dépistage génétique fà des fins de recherche dans le cadre de leur inclusion à l'étude INSIGHT. CONCLUSIONS: Alors que la majorité des parents ayant participé à l'étude voyait d'un bon œil la possibilité de soumettre leur enfant à un test de dépistage génétique les immigrants reçus ainsi que les participants originaires de l'Asie du Sud, de l'Extrême-Orient et de l'Asie du Sud-Est se sont avérés plus susceptibles de décliner l'offre. Par conséquent, le processus de consultation en génétique doit être adapté pour mieux répondre aux inquiétudes et aux préoccupations de ces groupes de parents; ceci afin de tirer le meilleur parti d'une prise de décision éclairée dans un contexte clinique.

From office tools to community supports: The need for infrastructure to address the social determinants of health in paediatric practice.

Previous research has highlighted the importance of addressing the social determinants of health to improve child health outcomes. However, significant barriers exist that limit the paediatrician's ability to properly address these issues. Barriers include a lack of clinical time, resources, training and education with regard to the social determinants of health; awareness of community resources; and case-management capacity. General practice recommendations to help the health care provider link patients to the community are insufficient. The objective of the current article was to present options for improving the link between the office and the community, using screening questions incorporating physician-based tools that link community resources. Simple interventions, such as routine referral to early-year centres and selected referral to public health home-visiting programs, may help to address populations with the greatest needs.

Des recherches antérieures ont fait ressortir l'importance de tenir compte des déterminants sociaux de la santé pour améliorer la santé des enfants. Cependant, des obstacles importants empêchent les pédiatres de bien se pencher sur la question, incluant le manque de temps clinique, de ressources, de formation et d'enseignement sur les déterminants de la santé, la connaissance des ressources communautaires et la capacité de gestion des cas. Les recommandations faites en pratique générale pour aider le dispensateur de soins à orienter les patients vers des ressources communautaires ne suffisent pas. Le présent article vise à présenter des moyens de faire de meilleurs liens entre le cabinet et la communauté, à l'aide de questions de dépistage intégrant des outils médicaux qui dirigent les patients vers des ressources communautaires. Des interventions simples, telles que l'orientation systématique vers des centres de la petite enfance et l'orientation sélective vers des programmes de visite à domicile par la santé publique, peuvent contribuer à servir les populations qui ont les besoins les plus criants.

Evaluation of a social pediatrics elective: transforming students' perspective through reflection.

OBJECTIVE: The aim of this study was to examine aspects of a social pediatrics elective that led to student self-reflection and transformation. METHODS: To assess student learning from our social pediatric elective, we retrospectively evaluated self-reflection papers. We focused on the effectiveness of the educational approach to inspire students to incorporate the social determinants of health into their practice. Furthermore, in each reflection paper, we looked for evidence of different phases of transformation. RESULTS: The social determinants of health were the most commonly described theme. Poverty was mentioned directly or described implicitly in almost all papers. For many students, seeing the social context of patients in real life, whether in a special clinic or at a home visit, was a disturbing and disorienting experience that triggered transformation. CONCLUSION: The use of reflection papers in the evaluation of a social pediatric elective documented transformative learning.

Speech and language support: How physicians can identify and treat speech and language delays in the office setting.

Failure to recognize and intervene early in speech and language delays can lead to multifaceted and potentially severe consequences for early child development and later literacy skills. While routine evaluations of speech and language during well-child visits are recommended, there is no standardized (office) approach to facilitate this. Furthermore, extensive wait times for speech and language pathology consultation represent valuable lost time for the child and family. Using speech and language expertise, and paediatric collaboration, key content for an office-based tool was developed. THE TOOL AIMED TO HELP PHYSICIANS ACHIEVE THREE MAIN GOALS: early and accurate identification of speech and language delays as well as children at risk for literacy challenges; appropriate referral to speech and language services when required; and teaching and, thus, empowering parents to create rich and responsive language environments at home. Using this tool, in combination with the Canadian Paediatric Society's Read, Speak, Sing and Grow Literacy Initiative, physicians will be better positioned to offer practical strategies to caregivers to enhance children's speech and language capabilities. The tool represents a strategy to evaluate speech and language delays. It depicts age-specific linguistic/phonetic milestones and suggests interventions. The tool represents a practical interim treatment while the family is waiting for formal speech and language therapy consultation.

Le défaut de dépister et d'intervenir rapidement en cas de retards de la parole et du langage peut avoir des conséquences multiples au potentiel grave en matière de développement de la petite enfance et d'aptitudes à la littératie plus tard. Il est recommandé de procéder à l'évaluation systématique de la parole et du langage pendant les bilans de santé des enfants, mais il n'existe pas d'approche normalisée (en cabinet) pour la faciliter. De plus, les temps d'attente prolongés avant d'obtenir une consultation en orthophonie constituent une perte de temps précieux pour l'enfant et sa famille. Faisant appel à des compétences en orthophonie et à la collaboration de pédiatres, les chercheurs ont préparé le contenu essentiel d'un outil à utiliser en cabinet.L'outil visait à aider les médecins à réaliser trois grands objectifs : le dépistage rapide et précis des retards de la parole et du langage et des enfants vulnérables à des problèmes de littératie, l'aiguillage convenable vers des services d'orthophonie, au besoin, et l'enseignement aux parents, afin de les habiliter à créer des environnements de langage riches et réceptifs à la maison. À l'aide de cet outil, en collaboration avec le programme Lisez, parlez, chantez de la Société canadienne de pédiatrie et l'initiative Grow Literacy, les médecins seront mieux placés pour offrir des stratégies pratiques aux personnes qui s'occupent d'enfants afin de renforcer les capacités des enfants sur le plan de la parole et du langage.L'outil représente une stratégie pour évaluer les retards de la parole et du langage. Il dépeint les étapes linguistiques et phonétiques propres à l'âge et propose des interventions. L'outil représente un traitement provisoire pratique tandis que la famille attend une consultation officielle en orthophonie.