Genomic Health Literacy Interventions in Pediatrics: Scoping Review

Background The emergence of genetic and genomic sequencing approaches for pediatric patients has raised questions about the genomic health literacy levels, attitudes toward receiving genomic information, and use of this information to inform treatment decisions by pediatric patients and their parents. However, the methods to educate pediatric patients and their parents about genomic concepts through digital health interventions have not been well-established. Objective The primary objective of this scoping review is to investigate the current levels of genomic health literacy and the attitudes toward receiving genomic information among pediatric patients and their parents. The secondary aim is to investigate patient education interventions that aim to measure and increase genomic health literacy among pediatric patients and their parents. The findings from this review will be used to inform future digital health interventions for patient education. Methods A scoping review using PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines and protocols was completed using the following databases: MEDLINE, Embase, CINAHL, and Scopus. Our search strategy included genomic information inclusive of all genetic and genomic terms, pediatrics, and patient education. Inclusion criteria included the following: the study included genetic, genomic, or a combination of genetic and genomic information; the study population was pediatric (children and adolescents <18 years) and parents of patients with pediatric illnesses or only parents of patients with pediatric illnesses; the study included an assessment of the knowledge, attitudes, and intervention regarding genomic information; the study was conducted in the last 12 years between 2008 and 2020; and the study was in the English language. Descriptive data regarding study design, methodology, disease population, and key findings were extracted. All the findings were collated, categorized, and reported thematically. Results Of the 4618 studies, 14 studies (n=6, 43% qualitative, n=6, 43% mixed methods, and n=2, 14% quantitative) were included. Key findings were based on the following 6 themes: knowledge of genomic concepts, use of the internet and social media for genomic information, use of genomic information for decision-making, hopes and attitudes toward receiving genomic information, experiences with genetic counseling, and interventions to improve genomic knowledge. Conclusions This review identified that older age is related to the capacity of understanding genomic concepts, increased genomic health literacy levels, and the perceived ability to participate in decision-making related to genomic information. In addition, internet-searching plays a major role in obtaining genomic information and filling gaps in communication with health care providers. However, little is known about the capacity of pediatric patients and their parents to understand genomic information and make informed decisions based on the genomic information obtained. More research is required to inform digital health interventions and to leverage the leading best practices to educate these genomic concepts.

Pediatric Illnesses and Pediatric Settings

Transdiagnostic treatments such as the Unified Protocol are uniquely situated to support health issues that present in childhood as well as in pediatric medical settings. In particular, the high comorbidity between anxiety and somatic concerns makes transdiagnostic approaches important to utilize in medical settings where they may first appear. There is limited literature on adapting the Unified Protocol for the Treatment of Emotional Disorders in Children (UP-C) in these settings, but some promising initial work has been done in the area of chronic pain. Clinicians are encouraged to consider adapting the UP-C to work with both health conditions and settings in childhood, given the likelihood of comorbid physical and mental health challenges in pediatrics. In addition, adaptations to a health care setting should focus on decreasing the frequency and duration of UP-C encounters while also working to address symptoms before they become more acute.

Zoledronic acid versus placebo in pediatric glucocorticoid-induced osteoporosis: A randomized double-blind phase 3 trial

Context Glucocorticoids (GC) prescribed for chronic pediatric illnesses are associated with osteoporotic fractures. Objective To determine the efficacy and safety of intravenous (IV) zoledronic acid (ZA) compared with placebo to treat pediatric GC-induced osteoporosis (GIO). Patients, Design and Setting Children 5-17 years of age with GIO were enrolled in this multi-national randomized, double-blind, placebo-controlled phase 3 trial (ClinicaTrials.gov NCT 00799266). Interventions and Main Outcome Measures Eligible children were randomized 1:1 to six monthly IV ZA 0.05 mg/kg or IV placebo. The primary endpoint was the change in lumbar spine bone mineral density Z-score (LSBMDZ) from baseline to month 12. Incident fractures and safety were assessed. Results Thirty-four children were enrolled (mean age 12.6 ± 3.4 years [18 on ZA, 16 on placebo]), all with low-trauma vertebral fractures. LSBMDZ increased from −2.13 ± 0.79 to −1.49 ± 1.05 on ZA, compared with −2.38 ± 0.90 to −2.27 ± 1.03 on placebo (least squares means difference 0.41 [95% confidence interval 0.02, 0.81; p=0.04]); when corrected for height Z-score, the least squares means difference in LBMDZ was 0.75 [0.27, 1.22; p=0.004]. Two children on placebo had new low-trauma VF versus none on ZA. Adverse events (AEs) were reported in 15/18 children (83%) on ZA, and in 12/16 (75%) on placebo, most frequently within 10 days after the first infusion. There were no deaths, nor treatment discontinuations due to treatment-emergent AEs. Conclusions LSBMDZ increased significantly on ZA compared with placebo over one year in children with GIO. Most AEs occurred after the first infusion.

Distress Trajectories for Parents of Children With DSD: A Growth Mixture Model

Objective This study identifies trajectories of parent depressive symptoms after having a child born with genital atypia due to a disorder/difference of sex development (DSD) or congenital adrenal hyperplasia (CAH) and across the first year postgenitoplasty (for parents who opted for surgery) or postbaseline (for parents who elected against surgery for their child). Hypotheses for four trajectory classes were guided by parent distress patterns previously identified among other medical conditions. Methods Participants included 70 mothers and 50 fathers of 71 children diagnosed with a DSD or CAH with reported moderate to high genital atypia. Parents were recruited from 11 US DSD specialty clinics within 2 years of the child’s birth and prior to genitoplasty. A growth mixture model (GMM) was conducted to identify classes of parent depressive symptoms over time. Results The best fitting model was a five-class linear GMM with freely estimated intercept variance. The classes identified were termed “Resilient,” “Recovery,” “Chronic,” “Escalating,” and “Elevated Partial Recovery.” Four classes have previously been identified for other pediatric illnesses; however, a fifth class was also identified. The majority of parents were classified in the “Resilient” class (67.6%). Conclusions This study provides new knowledge about the trajectories of depressive symptoms for parents of children with DSD. Future studies are needed to identify developmental, medical, or familial predictors of these trajectories.

Genomic Health Literacy Interventions in Pediatrics: Scoping Review (Preprint)

BACKGROUND The emergence of genetic and genomic sequencing approaches for pediatric patients has raised questions about the genomic health literacy levels, attitudes toward receiving genomic information, and use of this information to inform treatment decisions by pediatric patients and their parents. However, the methods to educate pediatric patients and their parents about genomic concepts through digital health interventions have not been well-established. OBJECTIVE The primary objective of this scoping review is to investigate the current levels of genomic health literacy and the attitudes toward receiving genomic information among pediatric patients and their parents. The secondary aim is to investigate patient education interventions that aim to measure and increase genomic health literacy among pediatric patients and their parents. The findings from this review will be used to inform future digital health interventions for patient education. METHODS A scoping review using PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines and protocols was completed using the following databases: MEDLINE, Embase, CINAHL, and Scopus. Our search strategy included genomic information inclusive of all genetic and genomic terms, pediatrics, and patient education. Inclusion criteria included the following: the study included genetic, genomic, or a combination of genetic and genomic information; the study population was pediatric (children and adolescents &lt;18 years) and parents of patients with pediatric illnesses or only parents of patients with pediatric illnesses; the study included an assessment of the knowledge, attitudes, and intervention regarding genomic information; the study was conducted in the last 12 years between 2008 and 2020; and the study was in the English language. Descriptive data regarding study design, methodology, disease population, and key findings were extracted. All the findings were collated, categorized, and reported thematically. RESULTS Of the 4618 studies, 14 studies (n=6, 43% qualitative, n=6, 43% mixed methods, and n=2, 14% quantitative) were included. Key findings were based on the following 6 themes: knowledge of genomic concepts, use of the internet and social media for genomic information, use of genomic information for decision-making, hopes and attitudes toward receiving genomic information, experiences with genetic counseling, and interventions to improve genomic knowledge. CONCLUSIONS This review identified that older age is related to the capacity of understanding genomic concepts, increased genomic health literacy levels, and the perceived ability to participate in decision-making related to genomic information. In addition, internet-searching plays a major role in obtaining genomic information and filling gaps in communication with health care providers. However, little is known about the capacity of pediatric patients and their parents to understand genomic information and make informed decisions based on the genomic information obtained. More research is required to inform digital health interventions and to leverage the leading best practices to educate these genomic concepts.

Assessment of Friedman Classification by Measuring Actual Tonsil Size During Surgery

Background and Objectives: Adenotonsillar enlargement is a common cause of pediatric illnesses, including obstructive respiratory disease and recurrent airway infection. The current tonsil grading systems evaluate tonsil size, but the correlation with actual tonsillar size in a clinical setting has not been established.Materials and Method: Between May and July of 2018, we recruited 31 children who underwent adenotonsillectomy with no major craniofacial abnormalities. The actual size of the palatine tonsils, the long (L1) and short (S1) axes of the tonsil beyond the anterior pillar, and the real axes (L2 and S2) after tonsil extraction from the fossa were measured during surgery. Adenoid size was determined by measuring the adenoid-nasopharynx (AN) ratio through lateral view x-ray of the neck.Results: Though S1 was related to the Friedman scale (p<0.001), measured real axes were not (L2: p=0.058, S2: p=0.056). Also, adenoid size and AN ratio did not relate statistically to the Friedman scale (p=0.565). One of the measured real tonsil size parameters (S2) was related to AN ratio (p=0.048).Conclusion: For pediatric patients undergoing tonsillectomy and adenoidectomy, the Friedman grading scale based on physical examination may not reflect the actual size of the tonsils. Therefore, for children with obstructive sleep disorder or recurrent tonsillitis, intraoperative measurement of tonsil size can be helpful.

Predictors of Health-Seeking Behavior for Fever Cases among Caregivers of Under-Five Children in Malaria-Endemic Area of Imo State, Nigeria

Fever is one of the most common symptoms of pediatric illnesses; it is an important early symptom of malaria. Fever had served as the entry point for presumptive treatment of malaria among children in Nigerian. Appropriate HSB is important when seeking treatment for fever among under-five children; this will help for better prognosis because treatment will be initiated early. This study attempted to identify caregiver’s HSB for under-five children with fever. A cross-sectional study was conducted in Imo-State, Nigeria. Appropriate HSB was operationally defined as seeking treatment from health facility within 24 h of fever. Data were obtained using pretested self-administered questionnaire. Data were analyzed using SPSS version 22. Simple and multiple logistic regression were used to determine predictors of appropriate HSB. A total of 559 eligible respondents were recruited; 103 (18.6%) caregivers had appropriate HSB. The predictors of HSB are being male child (aOR = 2.760; 95% CI:1.536–4.958), the age of child younger than 27 months (aOR = 2.804; 95% CI:1.485–5.295), employed caregivers (aOR = 1.882; 95% CI:1.014–3.493), number of household members (aOR = 2.504; 95% CI:1.464–4.283), and caregivers who decided to seek treatment at early stage (aOR = 7.060; 95% CI:1.616–30.852). Only 18.6% caregivers practiced appropriate HSB for fever cases among under-five children. It is essential to educate caregivers and emphasise on early treatment of fever and appropriate use of health facilities for fever. The findings will be used to improve intervention at the community level and will be compared with follow-up data to evaluate their effectiveness.

Neurological Disorders

Neurological conditions result from medical disorders that directly or indirectly affect the central nervous system and can result in difficulties with learning, behavior, memory, attention, and interpersonal functioning. This chapter describes two neurological conditions (epilepsy and pediatric brain tumor and other cancers) that either directly or indirectly affect the central nervous system and that may cause challenges in the educational setting. The two conditions illustrate several principles that are broadly important to all neurological conditions that may affect children in the school setting. The chapter contains a concise explanation of a model concerned with pediatric illnesses at school and how epilepsy and cancer express themselves in terms of this model. Finally, school-based interventions for both conditions and other educator-friendly resources are provided.

Pediatric Integrative Medicine in Academia: Stanford Children’s Experience

Pediatric integrative medicine is an emerging field which, to date, has not been described in detail in academic medical centers in the United States. Early research of pediatric integrative medicine modalities shows promise for the treatment of common pediatric conditions such as irritable bowel syndrome, acute and chronic pain, headache, and allergy, among others. In light of the growing prevalence of pediatric illnesses and patient complexity, it is crucial to emphasize the patient’s overall well-being. As academic centers around the world start to develop pediatric integrative medicine programs, the aim of this manuscript is to briefly highlight evidence of effective integrative treatments in pediatric subspecialties, to describe the establishment of our integrative medicine program, to summarize its early efforts, and to discuss potential barriers and keys to success.