Publications by authors named "Christopher Forrest"

299 Publications

Cross-Sectional Associations of Built and Social Neighborhood Environment Variables with Body Mass Index in a Large Sample of Urban Predominantly African American Children.

Child Obes 2021 Feb 8. Epub 2021 Feb 8.

Urban Health Collaborative, Drexel Dornsife School of Public Health, Philadelphia, Pennsylvania, USA.

Neighborhood environments may play a role in the development of child obesity by providing or limiting opportunities for children to be physically active and access healthy food near the home. This study quantifies associations between the neighborhood built and social environment and age- and sex- standardized body mass index (BMI) z-scores in a predominantly African American urban sample. Electronic health record data from a pediatric integrated delivery system ( = 26,460 children, 6 to 19 years old in Philadelphia in 2014) were linked to eight built and social neighborhood environment characteristics. Generalized estimating equations were used to obtain adjusted associations between neighborhood features and age- and sex-adjusted BMI Z-score. Interactions between built and social exposures were examined, as well as effect modification by age, sex, neighborhood socioeconomic status, and population density. Of 26,460 children, 17% were overweight and 21% were obese. After adjustment for individual- and neighborhood-level confounders, higher neighborhood greenness and higher walkability were associated with lower BMI z-score [mean difference per standard deviation (SD): -0.069 (95% confidence interval: [-0.108 to -0.031] and -0.051 [-0.085, -0.017], respectively)]. Higher levels of neighborhood food and physical activity resources were associated with higher BMI z-score [mean difference per SD 0.031 (0.012 and 0.050)]. We observed no interaction between the built and social neighborhood measures. Policies to promote walkability and greening of urban neighborhoods may contribute to preventing obesity in children.
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http://dx.doi.org/10.1089/chi.2020.0155DOI Listing
February 2021

International consensus on a standard set of outcome measures for child and youth anxiety, depression, obsessive-compulsive disorder, and post-traumatic stress disorder.

Lancet Psychiatry 2021 01;8(1):76-86

Wellcome Trust, London, UK.

A major barrier to improving care effectiveness for mental health is a lack of consensus on outcomes measurement. The International Consortium for Health Outcomes Measurement (ICHOM) has already developed a consensus-based standard set of outcomes for anxiety and depression in adults (including the Patient Health Questionnaire-9, the Generalised Anxiety Disorder 7-item Scale, and the WHO Disability Schedule). This Position Paper reports on recommendations specifically for anxiety, depression, obsessive-compulsive disorder, and post-traumatic stress disorder in children and young people aged between 6 and 24 years. An international ICHOM working group of 27 clinical, research, and lived experience experts formed a consensus through teleconferences, an exercise using an adapted Delphi technique (a method for reaching group consensus), and iterative anonymous voting, supported by sequential research inputs. A systematic scoping review identified 70 possible outcomes and 107 relevant measurement instruments. Measures were appraised for their feasibility in routine practice (ie, brevity, free availability, validation in children and young people, and language translation) and psychometric performance (ie, validity, reliability, and sensitivity to change). The final standard set recommends tracking symptoms, suicidal thoughts and behaviour, and functioning as a minimum through seven primarily patient-reported outcome measures: the Revised Children's Anxiety and Depression Scale, the Obsessive Compulsive Inventory for Children, the Children's Revised Impact of Events Scale, the Columbia Suicide Severity Rating Scale, the KIDSCREEN-10, the Children's Global Assessment Scale, and the Child Anxiety Life Interference Scale. The set's recommendations were validated through a feedback survey involving 487 participants across 45 countries. The set should be used alongside the anxiety and depression standard set for adults with clinicians selecting age-appropriate measures.
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http://dx.doi.org/10.1016/S2215-0366(20)30356-4DOI Listing
January 2021

Are there birth cohort effects in disparities in child obesity by maternal education?

Int J Obes (Lond) 2021 Mar 18;45(3):599-608. Epub 2020 Dec 18.

Applied Clinical Research Center, Department of Pediatrics, Children's Hospital of Philadelphia, 2716 South Street, Suite 11-473, Philadelphia, PA, 19104, USA.

Background: Children belonging to the same birth cohort (i.e., born in the same year) experience shared exposure to a common obesity-related milieu during the critical early years of development-e.g., secular beliefs and feeding practices, adverse chemical exposures, food access and nutrition assistance policies-that set the stage for a shared trajectory of obesity as they mature. Fundamental cause theory suggests that inequitable distribution of recent efforts to stem the rise in child obesity may exacerbate cohort-based disparities over time.

Methods: Data were from electronic health records spanning 2007-2016 linked to birth records for children ages 2-19 years. We used hierarchical age-period-cohort models to investigate cohort effects on disparities in obesity related to maternal education. We hypothesized that maternal education-based disparities in prevalence of obesity would be larger among more recent birth cohorts.

Results: Sex-stratified models adjusted for race/ethnicity showed substantial obesity disparities by maternal education that were evident even at young ages: prevalence among children with maternal education < high school compared to maternal college degree was approximately three times as high among girls and twice as high among boys. For maternal education < high school, disparities compared to maternal college degree were higher in more recent birth cohorts. Among girls, this disparity cohort effect was evident at younger ages (at age 4, the disparity increased by 4 [0.1-8] percentage points per 5 birth years), while among boys it was larger at older ages (at age 16, the disparity increased by 7 [1-14] percentage points per 5 birth years).

Conclusions: There may be widening maternal education-based disparities in child obesity by birth cohort at some ages.
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http://dx.doi.org/10.1038/s41366-020-00724-yDOI Listing
March 2021

Endoscopic Versus Open Total Vault Reconstruction of Sagittal Craniosynostosis.

J Craniofac Surg 2020 Dec 3. Epub 2020 Dec 3.

The Hospital for Sick Children, Toronto, Canada.

: Sagittal craniosynostosis is the most common form of congenital cranial deformity. Surgical interventions are performed either open or endoscopic. Advancements in minimally invasive surgery have enabled the development of the endoscopic suturectomy technique. This is contrasted to the traditional open cranial vault reconstruction. There is a paucity of data comparing the head shape changes from both techniques. This study aims to compare the morphological outcome of endoscopic suturectomy versus total cranial vault reconstruction.

Methods: This is a retrospective comparative study involving 55 cases of sagittal craniosynostosis, 37 of which has open total cranial vault reconstruction and 18 had endoscopic suturectomy procedure. Preoperative and postoperative 3D photographs of both groups were analyzed and compared. The change in correction between preoperative and postoperative state was measured against a crowd-driven standard for acceptable head shape.

Results: Total cranial vault had higher percentage change between pre and postoperative cranial index than endoscopic suturectomy (14.7% versus 7.7%, P = 0.003). However, both techniques were able to achieve the minimum standard of 70% correction (TCV 107.5%, ES 100.4%, P = 0.02).

Conclusion: Total cranial vault and endoscopic suturectomy are effective in correcting scaphocephaly among children with sagittal craniosynostosis. Additionally, both techniques are able to achieve a percentage correction that exceeds the 70% benchmark established by the lay public.
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http://dx.doi.org/10.1097/SCS.0000000000007307DOI Listing
December 2020

Considerations to Support Use of Patient-Reported Outcomes Measurement Information System Pediatric Measures in Ambulatory Clinics.

J Pediatr 2021 Mar 30;230:198-206.e2. Epub 2020 Nov 30.

Department of Health and Rehabilitation Sciences, Temple University College of Public Health, Philadelphia, PA.

Objective: To identify challenges to the use of Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric measures in the ambulatory pediatric setting and possible solutions to these challenges.

Study Design: Eighteen semistructured telephone interviews of health system leaders, measurement implementers, and ambulatory pediatric clinicians were conducted. Five coders used applied thematic analysis to iteratively identify and refine themes in interview data.

Results: Most interviewees had roles in leadership or the implementation of patient-centered outcomes; 39% were clinicians. Some had experience using PROMIS clinically (44%) and 6% were considering this use. Analyses yielded 6 themes: (1) selection of PROMIS measures, (2) method of administration, (3) use of PROMIS Parent Proxy measures, (4) privacy and confidentiality of PROMIS responses, (5) interpretation of PROMIS scores, and (6) using PROMIS scores clinically. Within the themes, interviewees illuminated specific unique considerations for using PROMIS with children, including care transitions and privacy.

Conclusions: Real-world challenges continue to hamper PROMIS use. Ongoing efforts to disseminate information about the integration of PROMIS measures in clinical care is critical to impacting the health of children.
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http://dx.doi.org/10.1016/j.jpeds.2020.11.053DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7914197PMC
March 2021

Provider Specialty and Receipt of Metabolic Monitoring for Children Taking Antipsychotics.

Pediatrics 2021 Jan 1;147(1). Epub 2020 Dec 1.

Departments of Health Outcomes and Biomedical Informatics and.

Background And Objectives: Metabolic monitoring is important for children taking antipsychotic medication, given the risk for increased BMI, impaired glucose metabolism, and hyperlipidemia. The purpose was to examine the influence of provider specialty on the receipt of metabolic monitoring. Specifically, differences in the receipt of recommended care when a child receives outpatient care from a primary care provider (PCP), a mental health provider with prescribing privileges, or both was examined.

Methods: Medicaid enrollment and health care and pharmacy claims data from 2 states were used in the analyses. Providers were assigned to specialties by using a crosswalk of the National Provider Identifier numbers to specialty type. A total of 41 078 children were included.

Results: For both states, 61% of children saw ≥1 provider type and had adjusted odds ratios for receiving metabolic monitoring that were significantly higher than those of children seeing PCPs only. For example, children seeing a PCP and a mental health provider with prescribing privileges during the year had adjusted odds of receiving metabolic monitoring that were 42% higher than those seeing a PCP alone ( < .001).

Conclusions: Shared care arrangements significantly increased the chances that metabolic monitoring would be done. For states, health plans, and clinicians to develop meaningful quality improvement strategies, identifying the multiple providers caring for the children and potentially responsible for ordering tests consistent with evidence-based care is essential. Provider attribution in the context of shared care arrangements plays a critical role in driving quality improvement efforts.
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http://dx.doi.org/10.1542/peds.2020-0658DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7780961PMC
January 2021

Assessment of 135 794 Pediatric Patients Tested for Severe Acute Respiratory Syndrome Coronavirus 2 Across the United States.

JAMA Pediatr 2021 02;175(2):176-184

Applied Clinical Research Center, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.

Importance: There is limited information on severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) testing and infection among pediatric patients across the United States.

Objective: To describe testing for SARS-CoV-2 and the epidemiology of infected patients.

Design, Setting, And Participants: A retrospective cohort study was conducted using electronic health record data from 135 794 patients younger than 25 years who were tested for SARS-CoV-2 from January 1 through September 8, 2020. Data were from PEDSnet, a network of 7 US pediatric health systems, comprising 6.5 million patients primarily from 11 states. Data analysis was performed from September 8 to 24, 2020.

Exposure: Testing for SARS-CoV-2.

Main Outcomes And Measures: SARS-CoV-2 infection and coronavirus disease 2019 (COVID-19) illness.

Results: A total of 135 794 pediatric patients (53% male; mean [SD] age, 8.8 [6.7] years; 3% Asian patients, 15% Black patients, 11% Hispanic patients, and 59% White patients; 290 per 10 000 population [range, 155-395 per 10 000 population across health systems]) were tested for SARS-CoV-2, and 5374 (4%) were infected with the virus (12 per 10 000 population [range, 7-16 per 10 000 population]). Compared with White patients, those of Black, Hispanic, and Asian race/ethnicity had lower rates of testing (Black: odds ratio [OR], 0.70 [95% CI, 0.68-0.72]; Hispanic: OR, 0.65 [95% CI, 0.63-0.67]; Asian: OR, 0.60 [95% CI, 0.57-0.63]); however, they were significantly more likely to have positive test results (Black: OR, 2.66 [95% CI, 2.43-2.90]; Hispanic: OR, 3.75 [95% CI, 3.39-4.15]; Asian: OR, 2.04 [95% CI, 1.69-2.48]). Older age (5-11 years: OR, 1.25 [95% CI, 1.13-1.38]; 12-17 years: OR, 1.92 [95% CI, 1.73-2.12]; 18-24 years: OR, 3.51 [95% CI, 3.11-3.97]), public payer (OR, 1.43 [95% CI, 1.31-1.57]), outpatient testing (OR, 2.13 [1.86-2.44]), and emergency department testing (OR, 3.16 [95% CI, 2.72-3.67]) were also associated with increased risk of infection. In univariate analyses, nonmalignant chronic disease was associated with lower likelihood of testing, and preexisting respiratory conditions were associated with lower risk of positive test results (standardized ratio [SR], 0.78 [95% CI, 0.73-0.84]). However, several other diagnosis groups were associated with a higher risk of positive test results: malignant disorders (SR, 1.54 [95% CI, 1.19-1.93]), cardiac disorders (SR, 1.18 [95% CI, 1.05-1.32]), endocrinologic disorders (SR, 1.52 [95% CI, 1.31-1.75]), gastrointestinal disorders (SR, 2.00 [95% CI, 1.04-1.38]), genetic disorders (SR, 1.19 [95% CI, 1.00-1.40]), hematologic disorders (SR, 1.26 [95% CI, 1.06-1.47]), musculoskeletal disorders (SR, 1.18 [95% CI, 1.07-1.30]), mental health disorders (SR, 1.20 [95% CI, 1.10-1.30]), and metabolic disorders (SR, 1.42 [95% CI, 1.24-1.61]). Among the 5374 patients with positive test results, 359 (7%) were hospitalized for respiratory, hypotensive, or COVID-19-specific illness. Of these, 99 (28%) required intensive care unit services, and 33 (9%) required mechanical ventilation. The case fatality rate was 0.2% (8 of 5374). The number of patients with a diagnosis of Kawasaki disease in early 2020 was 40% lower (259 vs 433 and 430) than in 2018 or 2019.

Conclusions And Relevance: In this large cohort study of US pediatric patients, SARS-CoV-2 infection rates were low, and clinical manifestations were typically mild. Black, Hispanic, and Asian race/ethnicity; adolescence and young adulthood; and nonrespiratory chronic medical conditions were associated with identified infection. Kawasaki disease diagnosis is not an effective proxy for multisystem inflammatory syndrome of childhood.
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http://dx.doi.org/10.1001/jamapediatrics.2020.5052DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7684518PMC
February 2021

Using nationally representative percentiles to interpret PROMIS pediatric measures.

Qual Life Res 2020 Nov 17. Epub 2020 Nov 17.

Applied Clinical Research Center, Children's Hospital of Philadelphia, Philadelphia, PA, USA.

Purpose: This study's aim was to use a representative sample of the US pediatric population to estimate percentiles for several PROMIS pediatric measures: Anger, Anxiety, Depressive Symptoms, Family Relationships, Fatigue, Global Health, Life Satisfaction, Meaning and Purpose, Pain Behavior, Pain Interference, Physical Activity, Physical Function Mobility, Physical Function Upper Extremity, Physical Stress Experiences, Positive Affect, Psychological Stress Experiences, Sleep Disturbance, Sleep Impairment, and Peer Relationships.

Methods: We used two separate, nationally representative samples of parents and children aged 5-17 years drawn in different years from the GfK Knowledge Panel, a dual-frame online probability panel.

Results: All measures that were developed using a representative sample had a median at or near the expected value of 50. For the other measures, the 50th percentile was often 10 points or more from 50. Several domains had high floors or low ceilings. No domain's percentiles completely corresponded to the percentiles associated with a normal distribution with a mean of 50 and standard deviation of 10.

Conclusions: This work allows users to interpret a child's self-reported quality of life relative to children in the US general population. When attempting to evaluate whether a child falls above or below other children in the US, one should use the values presented in this study. In addition, we recommend that users should focus on whether a child's score falls into one of a few broad severity groups rather than on specific percentile scores.
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http://dx.doi.org/10.1007/s11136-020-02700-5DOI Listing
November 2020

Facial Recognition Neural Networks Confirm Success of Facial Feminization Surgery.

Plast Reconstr Surg 2021 Feb;147(2):354e-355e

Division of Plastic and Reconstructive Surgery, Department of Surgery, University of Toronto, Division of Plastic and Reconstructive Surgery, The Hospital for Sick Children, Toronto, Ontario, Canada.

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http://dx.doi.org/10.1097/PRS.0000000000007562DOI Listing
February 2021

Concepts Important to Patients With Facial Differences: A Qualitative Study Informing a New Module of the FACE-Q for Children and Young Adults.

Cleft Palate Craniofac J 2020 Nov 6:1055665620969589. Epub 2020 Nov 6.

Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.

Objective: The concepts important to children and young adults who undergo treatments for facial differences are not well-defined. Measurement of treatment outcomes from the patient's perspective is necessary to ensure goals of treatment are met. We aimed to identify concepts important to children and young adults with facial differences through a qualitative study.

Design: An interpretive description qualitative approach was followed. Semistructured interviews were conducted, transcribed verbatim, and coded using a line-by-line approach. Qualitative analysis led to the development of a conceptual framework of outcomes important to patients.

Setting: Interviews were conducted in Canada and the United Kingdom at home, by telephone, or in the hospital.

Participants: Participants (N = 72) were recruited between May and June 2014 from craniofacial clinics at the Hospital for Sick Children (Toronto) and Great Ormond Street Hospital (London). Participants included anyone with a visible and/or functional facial difference aged 8 to 29 years and fluent in English, excluding patients with a cleft. The sample included 38 females and 34 males, with a mean age of 13.9 years, and included 28 facial conditions (11 facial paralysis, 18 ear anomalies, 26 skeletal conditions, and 17 soft tissue conditions).

Results: Analysis led to identification of important concepts within 4 overarching domains: facial appearance, facial function, adverse effects of treatment, and health-related quality of life (psychological, social, and school function).

Conclusions: Our study provides an understanding of concepts important to children and young adults with facial differences.
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http://dx.doi.org/10.1177/1055665620969589DOI Listing
November 2020

State of Gender Diversity and Equity Policies within Plastic and Reconstructive Surgery in Canada.

Plast Reconstr Surg Glob Open 2020 Sep 23;8(9):e3047. Epub 2020 Sep 23.

Division of Plastic and Reconstructive Surgery, Sunnybrook Health Sciences Centre and University of Toronto, Toronto, Ontario, Canada.

Background: Given the growing number of women in plastic and reconstructive surgery (PRS), it is imperative to evaluate the extent of gender diversity and equity policies among Canadian PRS programs to support female trainees and staff surgeons.

Methods: A modified version of the United Nations Women's Empowerment Principles (WEPs) Gender Gap Analysis tool was delivered to Canadian PRS Division Chairs (n = 11) and Residency Program Directors (n = 11). The survey assessed gender discrimination and equity policies, paid parental leave policies, and support for work/life balance.

Results: Six Program Directors (55% response rate) and ten Division Chairs (91% response rate) completed the survey. Fifty percent of respondents reported having a formal gender non-discrimination and equal opportunity policy in their program or division. Eighty-three percent of PRS residency programs offered paid maternity/paternity/caregiver leave; however, only 29% offered financial or non-financial support to its staff surgeons. Only 33% of programs had approaches to support residents as parents and/or caregivers upon return to work. Work/life balance was supported for most trainees (67%) but only few faculty members (14%).

Conclusions: The majority of Canadian PRS programs have approaches rather than formal policies to ensure gender non-discrimination and equal opportunity among residents and faculty. Although residency programs support wellness, few have approaches for trainees as parents and/or caregivers upon return to work. At the faculty level, approaches and policies lack support for maternity/paternity/caregiver leave or work/life balance. This information can be used to develop policy for support of plastic surgery trainees and faculty.
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http://dx.doi.org/10.1097/GOX.0000000000003047DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7544248PMC
September 2020

Early Life Antibiotic Prescriptions and Weight Outcomes in Children 10 Years of Age.

Acad Pediatr 2020 Oct 28. Epub 2020 Oct 28.

Division of Chronic Disease Research Across the Lifecourse, Department of Population Medicine, Harvard Pilgrim Health Care Institute, Harvard Medical School (SL Rifas-Shiman, J Young, P-ID Lin, and JP Block), Boston, Mass.

Objective: We previously found that antibiotic use at <24 months of age was associated with slightly higher body weight at 5 years of age. In this study, we examine associations of early life antibiotic prescriptions with weight outcomes at 108 to 132 months of age ("10 years").

Methods: We used electronic health record data from 2009 through 2016 from 10 health systems in PCORnet, a national distributed clinical research network. We examined associations of any (vs no) antibiotics at <24 months of age with body mass index z-score (BMI-z) at 10 years adjusted for confounders selected a priori. We further examined dose response (number of antibiotic episodes) and antibiotic spectrum (narrow and broad).

Results: Among 56,727 included children, 57% received any antibiotics at <24 months; at 10 years, mean (standard deviation) BMI-z was 0.54 (1.14), and 36% had overweight or obesity. Any versus no antibiotic use at <24 months was associated with a slightly higher BMI-z at 10 years among children without a complex chronic condition (β 0.03; 95% confidence interval [CI] 0.01, 0.05) or with a complex chronic condition (β 0.09; 95% CI 0.03, 0.15). Any versus no antibiotic use was not associated with odds of overweight or obesity at 10 years among children without (odds ratio 1.02; 95% CI 0.97, 1.07) or with a complex chronic condition (odds ratio 1.07; 95% CI 0.96, 1.19).

Conclusions: The small and likely clinically insignificant associations in this study are consistent with our previous 5-year follow-up results, suggesting that, if this relationship is indeed causal, early increases in weight are small but maintained over time.
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http://dx.doi.org/10.1016/j.acap.2020.10.016DOI Listing
October 2020

Development and evaluation of an EHR-based computable phenotype for identification of pediatric Crohn's disease patients in a National Pediatric Learning Health System.

Learn Health Syst 2020 Oct 28;4(4):e10243. Epub 2020 Aug 28.

Department of Pediatrics University of Colorado Denver Aurora Colorado USA.

Objectives: To develop and evaluate the classification accuracy of a computable phenotype for pediatric Crohn's disease using electronic health record data from PEDSnet, a large, multi-institutional research network and Learning Health System.

Study Design: Using clinician and informatician input, algorithms were developed using combinations of diagnostic and medication data drawn from the PEDSnet clinical dataset which is comprised of 5.6 million children from eight U.S. academic children's health systems. Six test algorithms (four cases, two non-cases) that combined use of specific medications for Crohn's disease plus the presence of Crohn's diagnosis were initially tested against the entire PEDSnet dataset. From these, three were selected for performance assessment using manual chart review (primary case algorithm, n = 360, primary non-case algorithm, n = 360, and alternative case algorithm, n = 80). Non-cases were patients having gastrointestinal diagnoses other than inflammatory bowel disease. Sensitivity, specificity, and positive predictive value (PPV) were assessed for the primary case and primary non-case algorithms.

Results: Of the six algorithms tested, the least restrictive algorithm requiring just ≥1 Crohn's diagnosis code yielded 11 950 cases across PEDSnet (prevalence 21/10 000). The most restrictive algorithm requiring ≥3 Crohn's disease diagnoses plus at least one medication yielded 7868 patients (prevalence 14/10 000). The most restrictive algorithm had the highest PPV (95%) and high sensitivity (91%) and specificity (94%). False positives were due primarily to a diagnosis reversal (from Crohn's disease to ulcerative colitis) or having a diagnosis of "indeterminate colitis." False negatives were rare.

Conclusions: Using diagnosis codes and medications available from PEDSnet, we developed a computable phenotype for pediatric Crohn's disease that had high specificity, sensitivity and predictive value. This process will be of use for developing computable phenotypes for other pediatric diseases, to facilitate cohort identification for retrospective and prospective studies, and to optimize clinical care through the PEDSnet Learning Health System.
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http://dx.doi.org/10.1002/lrh2.10243DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7556434PMC
October 2020

PCORnet® 2020: current state, accomplishments, and future directions.

J Clin Epidemiol 2021 Jan 28;129:60-67. Epub 2020 Sep 28.

Louisiana Public Health Institute, 1515 Poydras St, New Orleans, LA 70112, USA.

Objective: To describe PCORnet, a clinical research network developed for patient-centered outcomes research on a national scale.

Study Design And Setting: Descriptive study of the current state and future directions for PCORnet. We conducted cross-sectional analyses of the health systems and patient populations of the 9 Clinical Research Networks and 2 Health Plan Research Networks that are part of PCORnet.

Results: Within the Clinical Research Networks, electronic health data are currently collected from 337 hospitals, 169,695 physicians, 3,564 primary care practices, 338 emergency departments, and 1,024 community clinics. Patients can be recruited for prospective studies from any of these clinical sites. The Clinical Research Networks have accumulated data from 80 million patients with at least one visit from 2009 to 2018. The PCORnet Health Plan Research Network population of individuals with a valid enrollment segment from 2009 to 2019 exceeds 60 million individuals, who on average have 2.63 years of follow-up.

Conclusion: PCORnet's infrastructure comprises clinical data from a diverse cohort of patients and has the capacity to rapidly access these patient populations for pragmatic clinical trials, epidemiological research, and patient-centered research on rare diseases.
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http://dx.doi.org/10.1016/j.jclinepi.2020.09.036DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7521354PMC
January 2021

Ambient daily pollen levels in association with asthma exacerbation among children in Philadelphia, Pennsylvania.

Environ Int 2020 12 19;145:106138. Epub 2020 Sep 19.

Department of Environmental & Occupational Health, Dornsife School of Public Health, Drexel University, 3215 Market St, 6(th) floor, Philadelphia, PA 19104, United States.

Pollen from trees, grasses, and weeds can trigger asthma exacerbation in sensitized individuals. However, there are gaps in knowledge about the effects, such as the relative risks from different plant taxa and threshold levels of effect. We aimed to describe the local association between pollen and asthma exacerbation among children in the City of Philadelphia, and to evaluate whether effects are modified by children's characteristics and clinical factors (e.g., child's age, race/ethnicity, comorbidities). We conducted a time-stratified case-crossover study of pediatric (age <18 years) asthma exacerbation, with cases identified through electronic health records (EHR) of the Children's Hospital of Philadelphia (CHOP) health system from March through October in the years 2011-2016. Daily pollen counts were obtained from the local National Allergy Bureau certified pollen counter. We applied conditional logistic regression to estimate odds ratios (OR) and 95% confidence intervals (CI) for the association between the pollen level (vs. none detected) and odds of asthma exacerbation, adjusting for temperature, relative humidity, and holidays. We estimated same-day exposure effects, as well as effects from exposure lagged by up to 5 days. There were 35,040 asthma exacerbation events during the study period, with the majority occurring among black, non-Hispanic children (81.8%) and boys (60.4%). We found increased odds of asthma exacerbation among Philadelphia children in association with tree pollen, both for total tree pollen and most individual tree types. Increased odds from total tree pollen were observed at the lowest levels studied (≤5 grains/m, unlagged, OR = 1.06, 95% CI: 1.02, 1.10), and exhibited a positive exposure-response pattern of effect; tree pollen levels above 1000 grains/m (unlagged) were associated with 64% increased odds of asthma exacerbation (95% CI: 1.45, 1.84). Grass pollen was associated with asthma exacerbation only at levels above the 99 percentile (52 grains/m), which occurred, on average, two days per year during the study period (with 2-day lag, OR = 1.38, 95% CI: 1.19, 1.60). There was an inverse association (reduced asthma exacerbation) with ragweed pollen that was consistent across analyses. Pollen from other weeds was associated with increased odds of asthma exacerbation, without a clear exposure-response pattern (2-day lag, significant increases ranging from 8% to 19%). Increased odds from tree pollen and weeds (other than ragweed) were higher among children with allergic rhinitis. While there are known benefits from urban vegetation for human health, there are risks as well. It is important to note, however, that pollen is released during a limited time frame each year, and advisories informed by local data can enable susceptible individuals to avoid outdoor exposure on high-risk days.
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http://dx.doi.org/10.1016/j.envint.2020.106138DOI Listing
December 2020

Psychometric Findings for the SCAR-Q Patient-Reported Outcome Measure Based on 731 Children and Adults with Surgical, Traumatic, and Burn Scars from Four Countries.

Plast Reconstr Surg 2020 09;146(3):331e-338e

From The Hospital for Sick Children, University of Toronto; Harvard Brigham and Women's Hospital; Duke University School of Medicine; Auckland Regional Plastic Reconstructive and Hand Surgery; Hospital de Urgencia Asistencia Publica; University of California Davis Health; and McMaster University.

Background: Each year, millions of individuals develop scars secondary to surgery, trauma, and/or burns. Scar-specific patient-reported outcome measures to evaluate outcomes are needed. To address the gap in available measures, the SCAR-Q was developed following international guidelines for patient-reported outcome measure development. This study field tested the SCAR-Q and examined its psychometric properties.

Methods: Patients aged 8 years and older with a surgical, traumatic, and/or burn scar anywhere on their face or body were recruited between March of 2017 and April of 2018 at seven hospitals in four countries. Participants answered demographic and scar questions, the Fitzpatrick Skin Typing Questionnaire, the Patient and Observer Scar Assessment Scale (POSAS), and the SCAR-Q. Rasch measurement theory was used for the psychometric analysis. Cronbach's alpha, test-retest reliability, and concurrent validity were also examined.

Results: Consent was obtained from 773 patients, and 731 completed the study. Participants were aged 8 to 88 years, and 354 had surgical, 184 had burn, and 199 had traumatic scars. Analysis led to refinement of the SCAR-Q Appearance, Symptoms, and Psychosocial Impact scales. Reliability was high, with person separation index values of 0.91, 0.81, and 0.79; Cronbach alpha values of 0.96, 0.91, and 0.95; and intraclass correlation coefficient values of 0.92, 0.94, and 0.88, respectively. As predicted, correlations between POSAS scores and the Appearance and Symptom scales were higher than those between POSAS and Psychosocial Impact scale scores.

Conclusions: With increasing scar revisions, a scar-specific patient-reported outcome measure is needed to measure outcomes that matter to patients from their perspective. The SCAR-Q represents a rigorously developed, internationally applicable patient-reported outcome measure that can be used to evaluate scars in research, clinical care, and quality improvement initiatives.
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http://dx.doi.org/10.1097/PRS.0000000000007078DOI Listing
September 2020

Development of patient-reported outcome measures of children's oral health aesthetics.

Community Dent Oral Epidemiol 2020 10 10;48(5):423-432. Epub 2020 Aug 10.

Applied Clinical Research Center, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.

Objectives: To develop and evaluate the psychometric properties of child- and parent-proxy measures of oral health aesthetics.

Methods: Items that describe children's perceptions of their oral attractiveness and its impact on social, emotional, and behavioural functioning were developed based on a systematic review of existing measures, clinician feedback (n = 13) and child semi-structured interviews (n = 27). The tools' content validity was assessed in cognitive interviews with 21 children. Items were administered to socio-demographically diverse samples of 998 children aged 8-17 years and 626 parents of children aged 5-17 years. Psychometric methods were used to finalize and calibrate item banks, generate short questionnaire forms, and evaluate the tools' reliability, precision and validity.

Results: The item banks and their short forms provide precise measurement across a wide range of oral health aesthetic states. They measure relevant and meaningful positive and negative experiences using terminology that most children as young as 8 years of age can understand. Known-group comparisons and convergence with existing measures of oral health-related quality of life, global health and body image provide evidence of construct validity. The scores are interpretable relative to the US general population.

Conclusions: The oral health aesthetic item banks and short forms provide precise and valid assessments of children's satisfaction with their oral appearance. They may be useful for targeting and evaluating paediatric dental and orthodontic care in clinical practice and research settings.
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http://dx.doi.org/10.1111/cdoe.12555DOI Listing
October 2020

Priority Rankings of Patient-Reported Outcomes for Pancreatic Ductal Adenocarcinoma: A Comparison of Patient and Physician Perspectives.

J Natl Compr Canc Netw 2020 08;18(8):1075-1083

Cedars-Sinai Samuel Oschin Comprehensive Cancer Institute, Los Angeles, California.

Background: Pancreatic ductal adenocarcinoma (PDAC) is associated with high symptom burden. However, treatment decisions currently depend heavily on physician interpretation of clinical parameters and may not consider patients' health preferences. The NIH Patient-Reported Outcomes Measurement Information System (PROMIS) initiative standardized a set of patient-reported outcomes for use in chronic diseases. This study identifies preference rankings among patients with PDAC and physicians for PROMIS domains and compares the priorities of patients and their providers.

Methods: We condensed the 96 NIH PROMIS adult domains into 31 domains and created a Maximum Difference Scaling questionnaire. Domain preference scores were generated from the responses of patients with PDAC and physicians, which were compared using Maximum Difference Scaling software across demographic and clinical variables.

Results: Participants included 135 patients with PDAC (53% male; median age, 68 years) and 54 physicians (76% male; median years of experience, 10). Patients selected physical functioning (PF) as their top priority, whereas physicians identified pain as most important. PF, ability to perform activities of daily living, and symptom management were within the top 5 domains for both patients and physicians, and varied only slightly across age, sex, and ethnicity. However, several domains were ranked significantly higher by patients than by physicians, including but not limited to PF; ability to do things for yourself, family, and friends; ability to interact with others to obtain help; and sleep quality. Physicians ranked pain, anxiety, and depression higher than patients did.

Conclusions: Our findings suggest that patients with PDAC value PF and engaging in daily and social activities the most, whereas physicians prioritize symptoms such as pain. Patient-reported outcomes need to become more integrated into PDAC care and research to better identify unmet patient needs, inform treatment decisions, and develop therapies that address outcomes valued by patients.
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http://dx.doi.org/10.6004/jnccn.2020.7548DOI Listing
August 2020

Clinical validity of the PROMIS pediatric sleep short forms in children receiving treatment for cancer.

Pediatr Blood Cancer 2020 09 10;67(9):e28535. Epub 2020 Jul 10.

The Children's Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA.

Background: Rates of sleep disturbances vary widely across pediatric cancer studies, partly due to differences in measurement tools. Patient-reported outcomes measurement information system (PROMIS) offers a rigorously developed, well-validated pair of pediatric sleep health instruments needed to advance sleep research and clinical practice in pediatric cancer. The current study evaluated the clinical validity of PROMIS pediatric sleep scales (sleep disturbances [SD] and sleep-related impairment [SRI]) among children in active cancer treatment.

Procedure: Caregiver-patient dyads were enrolled during cancer treatment in 2-12 months after diagnosis: 45 children (ages 8-17 years) and 102 caregivers of children (ages 5-17 years) completed PROMIS SD and SRI 8-item short form self-report or caregiver-proxy scales, and caregivers reported the prior week's cancer treatments and blood counts.

Results: Both scales demonstrated strong internal consistency reliability across reporters. SD and SRI were higher than the PROMIS general population calibration sample for caregivers and patients. Oncology caregivers reported lower SD and SRI than sleep clinic caregivers, but oncology patients were similar to sleep clinic patients. Convergent validity was evidenced through moderate correlations between scales by reporter and both scales being significantly higher in patients taking medications for sleep. There were no significant differences in SD or SRI by diagnostic group, receiving radiation, or having low blood counts.

Conclusion: The PROMIS SD and SRI short forms are promising measures for pediatric oncology, demonstrating strong internal consistency reliability and multiple indications of clinical validity. Although groups did not differ based on treatment variables, results suggest the need for universal screening for sleep problems during pediatric cancer treatment.
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http://dx.doi.org/10.1002/pbc.28535DOI Listing
September 2020

Learning from local to global: An efficient distributed algorithm for modeling time-to-event data.

J Am Med Inform Assoc 2020 Jul;27(7):1028-1036

Department of Biostatistics, Epidemiology and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania, USA.

Objective: We developed and evaluated a privacy-preserving One-shot Distributed Algorithm to fit a multicenter Cox proportional hazards model (ODAC) without sharing patient-level information across sites.

Materials And Methods: Using patient-level data from a single site combined with only aggregated information from other sites, we constructed a surrogate likelihood function, approximating the Cox partial likelihood function obtained using patient-level data from all sites. By maximizing the surrogate likelihood function, each site obtained a local estimate of the model parameter, and the ODAC estimator was constructed as a weighted average of all the local estimates. We evaluated the performance of ODAC with (1) a simulation study and (2) a real-world use case study using 4 datasets from the Observational Health Data Sciences and Informatics network.

Results: On the one hand, our simulation study showed that ODAC provided estimates nearly the same as the estimator obtained by analyzing, in a single dataset, the combined patient-level data from all sites (ie, the pooled estimator). The relative bias was <0.1% across all scenarios. The accuracy of ODAC remained high across different sample sizes and event rates. On the other hand, the meta-analysis estimator, which was obtained by the inverse variance weighted average of the site-specific estimates, had substantial bias when the event rate is <5%, with the relative bias reaching 20% when the event rate is 1%. In the Observational Health Data Sciences and Informatics network application, the ODAC estimates have a relative bias <5% for 15 out of 16 log hazard ratios, whereas the meta-analysis estimates had substantially higher bias than ODAC.

Conclusions: ODAC is a privacy-preserving and noniterative method for implementing time-to-event analyses across multiple sites. It provides estimates on par with the pooled estimator and substantially outperforms the meta-analysis estimator when the event is uncommon, making it extremely suitable for studying rare events and diseases in a distributed manner.
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http://dx.doi.org/10.1093/jamia/ocaa044DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7647322PMC
July 2020

Heavy precipitation and asthma exacerbation risk among children: A case-crossover study using electronic health records linked with geospatial data.

Environ Res 2020 09 4;188:109714. Epub 2020 Jun 4.

Department of Environmental and Occupational Health, Dornsife School of Public Health, Drexel University, Philadelphia, PA, USA; Urban Health Collaborative, Dornsife School of Public Health, Drexel University, Philadelphia, PA, USA.

Extreme precipitation events may be an important environmental trigger for asthma exacerbations in children. We used a time stratified case-crossover design and data from a large electronic health record database at the Children's Hospital of Philadelphia (CHOP) to estimate associations of daily heavy precipitation (defined as > 95th percentile of the summertime distribution) with asthma exacerbation among children. We defined control days as those falling on the same day of the week within the same month and year as the case. We restricted our primary analyses to the summer months in years 2011-2016 and used conditional logistic regression models to estimate associations between heavy precipitation and acute asthma exacerbations in both outpatient (primary care, specialty care, and emergency department) and inpatient settings. We investigated numerous individual-level (e.g., age, sex, eczema diagnosis) and environmental measures (e.g., greenspace, particulate matter) as potential effect modifiers. The analysis include 13,483 asthma exacerbations in 10,434 children. Odds of asthma exacerbation were 11% higher on heavy precipitation vs. no precipitation days (95% CI: 1.02-1.21). There was little evidence of effect modification by most measures. These results suggest that heavy summertime precipitation events may contribute to asthma exacerbations. Further research using larger datasets from other health systems is needed to confirm these results, and to explore underlying mechanisms.
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http://dx.doi.org/10.1016/j.envres.2020.109714DOI Listing
September 2020

Patient-Reported Outcomes for Measuring Sleep Disturbance in Pediatric Atopic Dermatitis: cross sectional study of PROMIS Pediatric Sleep Measures and Actigraphy.

J Am Acad Dermatol 2020 Jun 3. Epub 2020 Jun 3.

Department of Dermatology, Northwestern University Feinberg School of Medicine, Chicago IL, USA.

Background: Most children with atopic dermatitis(AD) suffer from sleep disturbance, but reliable and valid assessment tools are lacking.

Objectives: To test PROMIS (Patient Reported Outcomes Measurement Information System) sleep measures in pediatric AD and to develop an algorithm to screen, assess and intervene to reduce sleep disturbance.

Methods: A cross-sectional study was conducted with AD children ages 5-17 years and one parent(n=61), who completed sleep, itch, and AD-specific questionnaires; clinicians assessed disease severity. All children wore actigraphy watches for 1-week-objective sleep assessment.

Results: PROMIS sleep disturbance parent-proxy-reliability was high (Cronbach's α=0.90) and differentiated among Patient Oriented Eczema Measure (POEM)-determined disease severity groups (mean±SD in mild vs. moderate vs. severe was 55.7±7.5 vs. 59.8±10.8 vs. 67.1±9.5, p<0.01). Sleep disturbance correlated with itch (Numerical Rating Scale/NRS, r=0.48), PROMIS sleep-related impairment (r=0.57), and worsened quality of life (Children's Dermatology Life Quality Index/CDLQI, r=0.58), all p<0.01. Positive report on POEM sleep disturbance question has high sensitivity (95%) for PROMIS parent-proxy-reported sleep disturbance (T-score ≥60). An algorithm for screening and intervening on sleep disturbance was proposed.

Limitations: This was a local sample.

Conclusions: Sleep disturbance in pediatric AD should be screened using the POEM sleep question, with further assessment using the PROMIS sleep disturbance measure or objective sleep monitoring if needed.
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http://dx.doi.org/10.1016/j.jaad.2020.05.138DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7710591PMC
June 2020

Primary Care Accessibility Effects on Health Care Utilization Among Urban Children.

Acad Pediatr 2020 08 31;20(6):871-878. Epub 2020 May 31.

Applied Clinical Research Center, Children's Hospital of Philadelphia (M Maltenfort and CB Forrest), Philadelphia, Pa.

Objective: Evidence suggests that spatial accessibility to primary care is a contributing factor to appropriate health care utilization, with limited primary care access resulting in avoidable hospitalizations and emergency department visits which are burdensome on individuals and our health care system. Limited research, however, has examined the effects on children.

Methods: We evaluated associations of spatial accessibility to primary care on health care utilization among a sample of 16,709 children aged 0 to 3 years in Philadelphia who were primarily non-White and publicly insured. Log-Poisson models with generalized estimating equations were used to estimate incidence rate ratios (RR) and 95% confidence intervals (CI), while accounting for 3 levels of clustering (within individual, within primary care practice, within neighborhood).

Results: In age-adjusted models, the lowest level of spatial accessibility was associated with 7% fewer primary care visits (RR 0.93, 95% CI 0.91, 0.95), 15% more emergency department visits (RR 1.15, 95% CI 1.09, 1.22), and 18% more avoidable hospitalizations (RR 1.18, 95% CI 1.01, 1.37). After adjustment for individual- (race/ethnicity, sex, number of chronic conditions, insurance status) and neighborhood-level (racial composition and proportion of housing units with no vehicle), spatial accessibility was not significantly associated with rate of health care utilization.

Conclusions: Individual-level predisposing factors, such as age, race, and need, attenuate the association between accessibility to primary care and use of primary care, emergency department visits, and avoidable hospitalization. Given the possibility of modifying access to primary care unlike immutable individual factors, a focus on spatial accessibility to primary care may promote appropriate health care utilization.
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http://dx.doi.org/10.1016/j.acap.2020.05.014DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7261359PMC
August 2020

Patient-reported outcomes in paediatric cancer survivorship: a qualitative study to elicit the content from cancer survivors and caregivers.

BMJ Open 2020 05 17;10(5):e032414. Epub 2020 May 17.

Department of Epidemiology and Cancer Control, St Jude Children's Research Hospital, Memphis, Tennessee, USA

Objectives: Content elucidation for patient-reported outcomes (PROs) in paediatric cancer survivorship is understudied. We aimed to compare differences in the contents of five PRO domains that are important to paediatric cancer survivorship through semistructured interviews with paediatric cancer survivors and caregivers, and identified new concepts that were not covered in the item banks of the Patient-Reported Outcomes Measurement Information System (PROMIS).

Design: Semistructured interviews to collect qualitative PRO data from survivors and caregivers.

Setting: A survivorship care clinic of a comprehensive cancer centre in the USA.

Participants: The study included 51 survivors (<18 years old) and 35 caregivers who completed interviews between August and December 2016. Content experts coded the transcribed interviews into 'meaningful concepts' per PROMIS item concepts and identified new concepts per a consensus. Frequencies of meaningful concepts used by survivors and caregivers were compared by Wilcoxon rank-sum test.

Results: For pain and meaning and purpose, 'Hurt a lot' and 'Purpose in life' were top concepts for survivors and caregivers, respectively. For fatigue and psychological stress, 'Needed to sleep during the day'/'Trouble doing schoolwork' and 'Felt worried' were top concepts for survivors, and 'Felt tired' and 'Felt distress'/'Felt stressed' for caregivers. Survivors reported more physically relevant contents (eg, 'Hard to do sport/exercise'; 0.78 vs 0.23, p=0.007) for pain, fatigue and stress, whereas caregivers used more emotionally relevant concepts (eg, 'Too tired to enjoy things I like to do'; 0.31 vs 0.05, p=0.025). Both groups reported positive thoughts for meaning and purpose (eg, 'Have goals for myself'). One (psychological stress, meaning and purpose) to eleven (fatigue) new concepts were generated.

Conclusions: Important PRO contents in the form of meaningful concepts raised by survivors and caregivers were different and new concepts emerged. PRO measures are warranted to include survivorship-specific items by accounting for the child's and the caregiver's viewpoints.
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http://dx.doi.org/10.1136/bmjopen-2019-032414DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7239535PMC
May 2020

Better sleep, better life? How sleep quality influences children's life satisfaction.

Qual Life Res 2020 Sep 12;29(9):2465-2474. Epub 2020 May 12.

University of Colorado Boulder, Boulder, CO, USA.

Purpose: To assess the association between children's sleep quality and life satisfaction; and to evaluate the underlying mechanisms of this relationship.

Methods: Three pediatric cohorts in the National Institutes of Health (NIH) Environmental influences on Child Health (ECHO) Research Program administered Patient-Reported Outcome Measurement Information System (PROMIS) parent-proxy measures to caregivers (n = 1111) who reported on their 5- to 9-year-old children's (n = 1251) sleep quality, psychological stress, general health, and life satisfaction; extant sociodemographic data were harmonized across cohorts. Bootstrapped path modeling of individual patient data meta-analysis was used to determine whether and to what extent stress and general health mediate the relationship between children's sleep quality and life satisfaction.

Results: Nonparametric bootstrapped path analyses with 1000 replications suggested children's sleep quality was associated with lower levels of stress and better general health, which, in turn, predicted higher levels of life satisfaction. Family environmental factors (i.e., income and maternal mental health) moderated these relationships.

Conclusion: Children who sleep well have happier lives than those with more disturbed sleep. Given the modifiable nature of children's sleep quality, this study offers evidence to inform future interventional studies on specific mechanisms to improve children's well-being.
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http://dx.doi.org/10.1007/s11136-020-02491-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7442661PMC
September 2020

Assessing Performance in Simulated Cleft Palate Repair Using a Novel Video Recording Setup.

Cleft Palate Craniofac J 2020 06;57(6):687-693

Division of Plastic & Reconstructive Surgery, The Hospital for Sick Children, Toronto, Ontario, Canada.

Objective: To test the feasibility of implementing a high-fidelity cleft palate simulator during a workshop in Santiago, Chile, using a novel video endoscope to assess technical performance.

Design: Sixteen cleft surgeons from South America participated in a 2-day cleft training workshop. All 16 participants performed a simulated repair, and 13 of them performed a second simulated repair. The repairs were recorded using a low-cost video camera and a newly designed camera mouth retractor attachment. Twenty-nine videos were assessed by 3 cleft surgeons using a previously developed cleft palate objective structured assessment of technical skill (CLOSATS with embedded overall score assessment) and global rating scale. The reliability of the ratings and technical performance in relation to minimum acceptable scores and previous experience was assessed.

Results: The video setup provided acceptable recording quality for the purpose of assessment. Average intraclass correlation coefficient for the CLOSATS, global, and overall performance score was 0.69, 0.75, and 0.82, respectively. None of the novice surgeons passed the CLOSATS and global score for both sessions. One participant in the intermediate group, and 2 participants in the advanced group passed the CLOSATS and global score for both sessions. There were highly experienced participants who failed to pass the CLOSATS and global score for both sessions.

Conclusions: The cleft palate simulator can be practically implemented with video-recording capability to assess performance in cleft palate repair. This technology may be of assistance in assessing surgical competence in cleft palate repair.
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http://dx.doi.org/10.1177/1055665620913178DOI Listing
June 2020

Development of the PROMIS Pediatric Physical Activity Item Banks.

Phys Ther 2020 08;100(8):1393-1410

Applied Clinical Research Center, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.

Objective: The purpose of this study was to develop self-report and parent-proxy measures of children's physical activity for clinical research and practice and to demonstrate a valid and reliable instrument of children's lived experience of physical activity as reported by the children themselves or their parent proxies.

Methods: This study involved qualitative development of item pools followed by 2 cross-sectional validity and reliability studies. The National Institutes of Health Patient Reported Outcome Measurement Information System (PROMIS) instrument development standards were applied to create child self-report and parent-proxy physical activity instruments from previously developed, content-valid pools of physical activity items. Each item used a 7-day recall period and had 5 response options. Item bank calibration was based on national samples totaling 3033 children aged 8 to 17 years and 2336 parents of children aged 5 to 17 years. Quantitative analyses included reliability assessments, factor analyses, item response theory calibration, differential item functioning, and construct validation.

Results: The final item banks comprised 10 items each. The items were selected based on content and psychometric properties. The item banks appeared to be unidimensional and free from differential item functioning. They showed excellent reliability and a high degree of precision across the range of the latent variable. Child-report and parent-proxy 4- and 8-item fixed-length instruments were specified. The instruments showed moderate correlation with existing self-report measures of physical activity.

Conclusion: The PROMIS Pediatric Physical Activity instruments provide precise and valid measurement of children's lived experiences of physical activity.

Impact: The availability of the PROMIS Pediatric Physical Activity instruments will support advances in clinical practice and research that require measurement of pediatric physical activity by self- and parent-proxy report.
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http://dx.doi.org/10.1093/ptj/pzaa074DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7439224PMC
August 2020

Public Perception of a Normal Head Shape in Children With Sagittal Craniosynostosis.

J Craniofac Surg 2020 Jun;31(4):940-944

The Hospital for Sick Children, Toronto, Canada.

: A question that remains unanswered is at what level of surgical correction does the public perceive a head shape to be "normal" or "acceptable?" For most cases of non-syndromic asymptomatic craniosynostosis, the parents desire for surgical correction is to improve the cosmetic appearance of head shape. At the time of this writing, the intraoperative surgeons' perspective of what constitutes an acceptable head shape is the target for surgical correction. In introducing an improved objectively cosmetic goal, an appropriate outcome measure would be to assess what the general public considers a normal or acceptable head shape in children with craniosynostosis.

Method: Twenty-two unique images were presented via an online crowdsourcing survey of a severe case of non-syndromic sagittal craniosynosis gradually corrected to an age and gender matched normalized head shape. Participants were recruited via the Sick Kids Twitter account. Participants were invited to rate the head shapes as "normal" or "abnormal."

Results: The 538 participants completed the online survey. Participants were able to reliably and consistently identify normal and abnormal head shapes with a Kappa Score >0.775. Furthermore, participants indicated that a correction of 70% is required in order for the cranial deformity to be regarded as "normal." This threshold closely reflects a normal Cranial Index, which is a widely used morphometric outcome in craniosynostosis.

Conclusion: Crowdsourcing provides an ideal method for capturing the general population's perspective on what constitutes a normal and acceptable head shape in children with sagittal craniosynostosis. Laypersons are able to reliably and consistently distinguish cranial deformities from a "normal" head shape. The public indicates a threshold correction of 70% in sagittal craniosynosis to regard it as a "normal" head shape.
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http://dx.doi.org/10.1097/SCS.0000000000006260DOI Listing
June 2020

Establishing the content validity of PROMIS Pediatric pain interference, fatigue, sleep disturbance, and sleep-related impairment measures in children with chronic kidney disease and Crohn's disease.

J Patient Rep Outcomes 2020 Feb 12;4(1):11. Epub 2020 Feb 12.

Division of Pediatric Nephrology, Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, USA.

Background: PROMIS Pediatric patient-reported outcome measures were developed with children from the general population, and their content validity has not been established in children with chronic disease. This study was done to evaluate the content validity of the PROMIS Pediatric Pain Interference and Fatigue measures in children 8-17 years-old with Crohn's disease and the PROMIS Pediatric Fatigue, Sleep Disturbance, and Sleep-related Impairment measures for children 8-17 years-old with chronic kidney disease.

Methods: We conducted semi-structured interviews with individuals affected by Crohn's disease and chronic kidney disease. The interviews were done to elicit children's lived experiences of the PROMIS outcomes of interest. We used deductive content analysis to contrast the participants' reports of their symptoms and impacts on daily life with existing conceptual frameworks for the PROMIS measures, each of which was developed with input from children in the general population.

Results: On average, we elicited an average of 7 pain interference and 7 fatigue concepts from Crohn's disease participants (n = 37), while chronic kidney disease participants (n = 26) provided 9 concepts for fatigue, 4 for sleep disturbance, and 7 for sleep-related impairment. Concept saturation was achieved after 16-19 interviews across the four PROMIS measures. Children with these two chronic health conditions reported the same breadth and types of lived experiences as children from the development samples drawn from the general population.

Conclusion: The study supports the content validity of several PROMIS Pediatric measures for children with Crohn's disease and chronic kidney disease. These findings provide evidence that PROMIS Pediatric measures, developed as universally relevant patient-reported outcomes, may be more broadly applicable to children with chronic disease.
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http://dx.doi.org/10.1186/s41687-020-0178-2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7016154PMC
February 2020

Variability in Diagnosed Asthma in Young Children in a Large Pediatric Primary Care Network.

Acad Pediatr 2020 Sep - Oct;20(7):958-966. Epub 2020 Feb 7.

Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania (CC Kenyon, SE Henrickson, and CB Forrest); Applied Clinical Research Center, Children's Hospital of Philadelphia (MG Maltenfort and CB Forrest).

Objective: Our objectives were to 1) quantify the frequency of wheezing episodes and asthma diagnosis in young children in a large pediatric primary care network and 2) assess the variability in practice-level asthma diagnosis, accounting for common asthma risk factors and comorbidities. We hypothesized that significant variability in practice-level asthma diagnosis rates would remain after adjusting for associated predictors.

Methods: We generated a retrospective longitudinal birth cohort of children who visited 1 of 31 pediatric primary care practices within the first 6 months of life from 1/2005 to 12/2016. Children were observed for up to 8 years or until the end of the observation window. We used multivariable discrete time survival models to evaluate predictors of asthma diagnosis by 3-month age intervals. We compared unadjusted and adjusted proportions of children diagnosed with asthma by practice.

Results: Of the 161,502 children in the cohort, 34,578 children (21%) received at least 1 asthma diagnosis. In multivariable modeling, male gender, minority race/ethnicity, gestational age <34 weeks, allergic rhinitis, food allergy, and prior wheezing episodes were associated with asthma diagnosis. After adjusting for variation in these predictors across practices, the cumulative incidence of asthma diagnosis by practice by age 6 years ranged from 11% to 47% (interquartile range: 24%-29%).

Conclusions: Across pediatric primary care practices, adjusted incidence of asthma diagnosis by age 6 years ranged widely, though variation gauged by the interquartile range was more modest. Potential sources of practice-level variation, such as differing diagnosis thresholds and labeling of different wheezing phenotypes as "asthma," should be further investigated.
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http://dx.doi.org/10.1016/j.acap.2020.02.003DOI Listing
February 2020