Anticipatory Guidance Research Articles

Bereaved Parent Perspectives on End-of-Life Conversations in Pediatric Oncology.

Background: Professional education pertaining to end-of-life care with pediatric oncology patients is limited. Pediatric trainees learn about end-of-life conversations largely from the provider’s perspective. Bereaved parents can inform the education of oncologists and the interdisciplinary team by sharing their perceptions and preferences through personal narratives. Methods: The aim of this project was to enhance the healthcare teams’ understanding of bereaved parents’ end-of-life care preferences through narratives. Bereaved parents were recruited from our institution’s Pediatric Supportive Care Committee membership. Parents were tasked with identifying elements of care that were of the greatest importance to them, based upon their personal experiences during their child’s end-of-life care. Narratives were analyzed using standard qualitative methods. Results: Parents of five patients participated, including four mothers and three fathers. Ten themes summarizing essential elements of end-of-life care were identified, including early ongoing and stepwise prognostic disclosure, honoring the child’s voice, support of hope and realism, anticipatory guidance on dying, and continued contact with the bereaved. Conclusion: Bereaved parents emphasize the need for providers to have ongoing honest conversations that support realism and hope that can help them to best prepare for their child’s end of life and to remain in contact with them after death.

It's not always binary: Connecting the continuum of caregiver depression with child adjustment in children who are high risk for maltreatment

BackgroundYoung children living with a depressed parent are at risk for developing social, behavioral, and emotional problems. The purpose of this study was to evaluate whether an increase in subclinical caregiver depression scores was associated with increases in internalizing and externalizing behavior in children who are at high risk for maltreatment. MethodsThe 1019 U.S.-based dyads consisted of predominantly single (45.53%) and Black/African American (53.29%) caregivers and high-risk 4-year-olds from the LONGSCAN study. Multivariate regression analyzes were used to evaluate the relationship between caregiver Center for Epidemiological Studies-Depression (CES-D) scores, above and below the at-risk for depression CES-D score, and preschooler internalizing, externalizing, and total problem behaviors, measured with the Child Behavior Checklist (CBCL). ResultsCaregiver CES-D score increases, above and below the at-risk for depression score, were significantly associated (p < 0.05) with increased child internalizing, externalizing, and total problem behaviors. After adjusting for covariates, among dyads whose caregivers had subclinical (CES-D < 16) scores, a one-unit score increase was significantly associated with a 0.43 increase (p = 0.00) in children's CBCL internalizing score. LimitationsThese findings are restricted to preschool children who are at risk for maltreatment, limiting generalizability. ConclusionsLow and moderate levels of caregiver depressive symptomatology were associated with a negative influence on preschoolers' adjustment. Practitioners should consider that the link between caregiver depression and child wellbeing may lie on a continuum. With consideration of the full continuum of symptoms, early intervention and anticipatory guidance may decrease the impact of depression on the caregiver, child, and system.

Transition to Adulthood for Autistic Adolescents: Topics Discussed by Healthcare Providers With Autistic Patients and Families

PurposeWe surveyed healthcare providers to determine the extent to which they discuss transition-to-adulthood topics with autistic patients without intellectual disabilities. MethodsSeventy-four healthcare providers in the Philadelphia area reported on the patient age at which they begin transition conversations, topics covered, and provider comfort. We calculated the proportion of providers who endorsed each transition topic, overall and by clinical setting. ResultsProviders initiated transition-related conversations at a median age of 16 years (IQR: 14, 18), with over half reporting they were “somewhat” or “a little” comfortable with discussions. Nearly all providers discussed at least one healthcare, well-being, and mental health topic, while basic need-related discussions were limited. DiscussionResults suggest providers may delay and feel poorly prepared to provide anticipatory guidance to autistic patients for transition to adulthood. Future efforts to enhance the available resources and preparation available to providers are essential to meet autistic patients’ needs.

Contraceptive use in women with inherited metabolic disorders: a retrospective study and literature review

BackgroundReproductive planning is an emerging concern for women with inherited metabolic disease (IMD). Anticipatory guidance on contraception is necessary to prevent unintended pregnancies in this population. Few resources exist to aid informed decision-making on contraceptive choice. A retrospective case–control study was performed to examine trends in reproductive planning for adolescent and adult women seen at the Children’s Hospital of Philadelphia (CHOP). Literature review on contraception and IMD was performed to assess global use.ResultsIn a cohort of 221 reproductive-aged female IMD patients, 29.4% reported routine contraceptive use. Anticipatory guidance on contraception was provided by metabolic physicians to 36.8% of patients during the study period. Contraception discussion was more likely to occur in women older than 21 years, who lived independently and were followed by gynecology. Women who received contraception counseling from their metabolic physician were 40-fold more likely to use regular contraception. Use of combined hormonal contraceptives was most commonly reported, but contraception choice varied by age and IMD.ConclusionMetabolic physicians are ideally suited to provide guidance on contraception to women with IMD. Reproductive planning should be addressed routinely using shared decision-making. Contraceptives should be selected for their efficacy, effects on metabolism, and likelihood of patient adherence.

Opportunities for Enhanced Transition of Care Preparation for Adolescents and Emerging Adults With Type 1 Diabetes: Use of the READDY Transition Tool.

There is an ongoing need to determine best practices for effective transition from pediatric to adult care for adolescents and emerging adults (EAs) with type 1 diabetes given the potential for poor health outcomes post-transfer. This study evaluated self-reported confidence ratings as measured by the Readiness of Emerging Adults with Diabetes Diagnosed in Youth (READDY) tool among adolescents and EAs with type 1 diabetes and the association of the confidence ratings with clinical and demographic characteristics, as well as provider documentation of relevant anticipatory guidance topics. The READDY is a diabetes-specific tool used to collect patient-reported confidence in transition preparation topics to target educational interventions. These interventions are divided into four domains: Diabetes Knowledge, Health System Navigation, Insulin Self-Management, and Health Behaviors. A retrospective chart review was conducted of patients 15-24 years of age with type 1 diabetes who completed the READDY survey between January 2017 and January 2018 at a single center. Overall patient-reported confidence levels were high. However, adolescents and EAs endorsed their lowest levels of confidence on items assessing knowledge of alcohol, tobacco, sexual health, and the impact of diabetes on pregnancy (females only), with the percentages of low scores of 20.7, 25.9, 35.9, and 42.9%, respectively. Documentation of provider counseling about screening and prevention of diabetes comorbidities, alcohol use, and tobacco use was associated with scores in the higher range for the corresponding item in the READDY survey. These findings highlight an opportunity to create interventions related to developmentally important topics for adolescents and EAs with type 1 diabetes to enhance successful transition preparation.

Incidence of potentially disruptive medical and social events in older adults with and without dementia.

Potentially disruptive medical, surgical, and social events-such as pneumonia, hip fracture, and widowhood-may accelerate the trajectory of decline and impact caregiving needs in older adults, especially among people with dementia (PWD). Prior research has focused primarily on nursing home residents with dementia. We sought to assess the incidence of potentially disruptive events in community-dwelling people with and without dementia. Retrospective cohort study of participants aged 65+ enrolled in the Health and Retirement Study between 2010 and 2018 (n=9346), including a subset who were married-partnered at baseline (n=5105). Dementia was defined with a previously validated algorithm. We calculated age-adjusted and gender-stratified incidence per 1000 person-years and incidence rate ratios of: 1) hospitalization for pneumonia, 2) hip fracture, and 3) widowhood in people with and without dementia. PWD (n=596) were older (mean age 84 vs. 75) and a higher proportion were female (67% vs. 57%) than people without dementia (PWoD) (n=8750). Age-adjusted incidence rates (per 1000 person-years) of pneumonia were higher in PWD (113.1; 95% CI 94.3, 131.9) compared to PWoD (62.1; 95% CI 54.7, 69.5), as were hip fractures (12.3; 95% CI 9.1, 15.6 for PWD compared to 8.1; 95% CI 6.9, 9.2 in PWoD). Point estimates of widowhood incidence were slightly higher for PWD (25.3; 95% CI 20.1, 30.5) compared to PWoD (21.9; 95% CI 20.3, 23.5), but differences were not statistically significant. The association of dementia with hip fracture-but not pneumonia or widowhood-was modified by gender (male incidence rate ratio [IRR] 2.24, 95% CI 1.34, 3.75 versus female IRR 1.31 95% CI 0.92,1.86); interaction term p=0.02). Compared to PWoD, community-dwelling PWD had higher rates of pneumonia and hip fracture, but not widowhood. Knowing how often PWD experience these events can aid in anticipatory guidance and care planning for this growing population.

Clinical practice guidelines and consensus statements for antenatal oral healthcare: An assessment of their methodological quality and content of recommendations.

ObjectivesTo review the content of recommendations within antenatal oral healthcare guidance documents and appraise the quality of their methodology to inform areas of development, clinical practice, and research focus.MethodA systematic search of five electronic databases, Google search engine, and databases from relevant professional and guideline development groups published in English, developed countries, and between 2010 and 2020 was undertaken to identify guidance documents related to antenatal oral healthcare. Quality of documents was appraised using the Appraisal of Guidelines Research and Evaluation II tool, and a 3-step quality cut-off value was used. Inductive thematic analysis was employed to categories discreet recommendations into themes.ResultsSix guidelines and one consensus statement were analysed. Two documents developed within Australia scored ≥60% across five of the six domains of the quality appraisal tool and were recommended for use. Four documents (developed in the United States and Canada) were recommended for use with modifications, whilst one document (developed in Europe) was not recommended. A total of 98 discreet recommendations were identified and demonstrated considerable unanimity but differed in scope and level of information. The main content and number of recommendations were inductively categorised within the following clinical practice points: risk factor assessments (n = 2), screening and assessment (n = 10), pre-pregnancy care (referral, n = 1), antenatal care (health education and advice, n = 14; management of nausea and vomiting, n = 7; referral, n = 2), postnatal care (health education and advice, n = 1; anticipatory guidance, n = 6), documentation (n = 4), coordinated care (n = 4), capacity building (n = 6), and community engagement (n = 1).ConclusionThe methodological rigour of included guidance documents revealed areas of strengths and limitations and posit areas for improvement. Further research could centre on adapting antenatal oral healthcare guidelines and consensus statements to local contexts. More high-quality studies examining interventions within antenatal oral healthcare are needed to support the development of recommendations.

Derivation of the Pediatric Acute Gastroenteritis Risk Score to Predict Moderate-to-Severe Acute Gastroenteritis.

Although most acute gastroenteritis (AGE) episodes in children rapidly self-resolve, some children go on to experience more significant and prolonged illness. We sought to develop a prognostic score to identify children at risk of experiencing moderate-to-severe disease after an index emergency department (ED) visit. Data were collected from a cohort of children 3 to 48 months of age diagnosed with AGE in 16 North American pediatric EDs. Moderate-to-severe AGE was defined as a Modified Vesikari Scale (MVS) score ≥9 during the 14-day post-ED visit. A clinical prognostic model was derived using multivariable logistic regression and converted into a simple risk score. The model's accuracy was assessed for moderate-to-severe AGE and several secondary outcomes. After their index ED visit, 19% (336/1770) of participants developed moderate-to-severe AGE. Patient age, number of vomiting episodes, dehydration status, prior ED visits, and intravenous rehydration were associated with MVS ≥9 in multivariable regression. Calibration of the prognostic model was strong with a P value of 0.77 by the Hosmer-Lemenshow goodness-of-fit test, and discrimination was moderate with an area under the receiver operator characteristic curve of 0.68 (95% confidence interval [CI] 0.65-0.72). Similarly, the model was shown to have good calibration when fit to the secondary outcomes of subsequent ED revisit, intravenous rehydration, or hospitalization within 72 hours after the index visit. After external validation, this new risk score may provide clinicians with accurate prognostic insight into the likely disease course of children with AGE, informing disposition decisions, anticipatory guidance, and follow-up care.

Short-Term Adverse Drug Reactions to Antiretroviral Therapy in Children with HIV: A Cohort Study.

To carry out an active surveillance for adverse drug reactions (ADRs) in children with HIV infection newly initiated on antiretroviral therapy (ART), determine risk factors for their occurrence, and assess their influence on adherence to ART. All children newly initiated on ART from 1st March 2014 to 30th June 2019 at a tertiary care children's hospital in New Delhi, were actively monitored for ADRs to ART for a period of 6 mo after ART initiation. The frequency, spectrum, and severity of ADRs, their influence on adherence, and risk factors for their occurrence were analyzed. Among the 174 enrolled children, ADRs were observed in 78 (44.8%) children during the first 6 mo after ART initiation. Total numbers of episodes of ADR observed were 108 (0.62 episodes of ADR/child). Sixty percent of events were of grade 1 severity, 19.4% events were of grade 2 and 3 each, while 1 (0.9%) event was of grade 4 severity. Adherence to ART was adversely affected in 21.8% of ADRs. Gastrointestinal symptoms (49.1%) were most frequent among all the events observed. Zidovudine, lopinavir/ritonavir, efavirenz and nevirapine based regimes were significantly associated with hematological, gastrointestinal, neurological, and dermatological ADRs, respectively. Children with immunological suppression were at a higher risk of developing ADRs as compared to those without it [RR 1.9 (95% CI (1.1-3.2)]. ADRs to ART are very frequent; most of them are mild and self-limiting. However, they can adversely impact adherence to ART. Anticipatory guidance, ongoing monitoring, and provision of symptomatic treatment will help tide over most ADRs and reduce their adverse impact upon ART adherence.

Abstract TP189: Atrial Fibrillation, Age, And Ischemic Stroke Severity In A Nationally Representative Dataset

Introduction: Atrial fibrillation (AF), a well-defined ischemic stroke (IS) risk factor whose prevalence increases with age, is associated with higher stroke severity. We aimed to evaluate stroke severity and hospital mortality in a nationally representative sample of AF-related IS patients. Methods: We utilized data from the National (Nationwide) Inpatient Sample databases from 2015 - 2018 using ICD-10 diagnostic codes to identify individuals with IS and comorbid AF. The NIHSS was used to characterize stroke severity in a subset of cases after 10/1/2016. Nonparametric statistics and logistic regression analyses were conducted to evaluate associations between AF and hospital death. Results: Of the 382,758 IS cases, 99,566 (26%) had comorbid AF. AF increased linearly with age, reaching at 47% of all hospitalized IS patients 85+ years of age or older (Figure). Higher age, male sex, white race, obesity, and higher median income were associated with comorbid AF, whereas diabetes, hypertension, tobacco use, and hyperlipidemia were associated with reduced odds of comorbid AF. While 5.8% of all IS patients died during hospitalization, mortality was increased nearly two-fold in those with AF (9.0% vs. 4.6%, p&lt;.001). Among in-hospital deaths from IS, comorbid AF increased with age, present in 59% of those 85+ years of age or older (Figure). NIHSS, reported in 21% of patients, was higher in AF patients (mean NIHSS 6 vs. 9, p&lt;.001). High NIHSS was the strongest independent predictor of hospital death. Conclusion: The burden of AF in a nationally representative sample of hospitalized IS patients is substantial, present in nearly 50% of the 85+ age group. AF-related IS is more severe and more likely to be fatal. As our population ages, the prevalence of AF will only increase. Understanding the severity and fatality of AF-related IS will have profound implications for health systems and may better facilitate anticipatory guidance and AF treatment.

Rest and Readiness

Rest and Readiness

Improving Guidance and Maternal Knowledge Retention After Well-Newborn Unit Discharge.

In 2015, the American Academy of Pediatrics published a policy statement to provide best practices on mother-infant discharge criteria, including the delivery of anticipatory guidance to mothers of healthy newborns. In our large health system with a mix of hospital types, no standard approach to or measurement of the effectiveness of newborn discharge guidance exists. At one community well-newborn unit, we aimed to increase maternal knowledge retention of newborn guidance from 69% to 90%. Data about newborn guidance effectiveness were collected by assessing maternal knowledge retention through phone follow-up quizzes. By using quality improvement methodology and informed by American Academy of Pediatrics guidelines and curricular and adult learning theory, we standardized a multidisciplinary approach to this education. Interventions included checklist, scripts, temperature-taking demonstration, gift thermometer, staff education, car seat infant mannequin, and car seat training video for staff. Over a 1-year period, 333 mothers were interviewed after discharge from the well-newborn unit. Baseline data over the first 3 months (n = 93) showed poor maternal knowledge retention (69% correct answers). Common incorrect answers were on newborn urination habits, car seat harness clip positioning, and fever recognition. After restructuring the educational process, special cause was achieved after 3 months, with a shift of the average of correct answers to 83% followed by a second shift to 86%. The implementation of interventions to standardize newborn discharge guidance resulted in marked and sustained improvement in maternal knowledge after well-newborn unit discharge. Our next step is to enhance the process by using videos with systemwide implementation.

Prevalence and Determinants of Screen-Viewing in Children Under Two Years in Suva, Fiji

To determine the prevalence of screen-viewing and factors affecting this behavior among children aged less than two years in Suva, Fiji. This cross-sectional study was conducted at three randomly selected maternal and child health (MCH) clinics among parents or accompanying guardians of 379 children. Data collection was carried out using a 20-item self-administrated questionnaire. The prevalence of screen-viewing in children was 66.2%. Screen-viewing was more prevalent in children aged 12-24 months (89%) than in children below 12 months (57%). The risk of screen-viewing was high among those who had parents as daytime caregivers (RR (95% CI) = 0.93 (0.82 - 1.04), P=0.001), iTaukei (RR (95% CI) = 0.79 (0.71-0.87), P=0.001), and children younger than 12 months (RR (95% CI) = 0.64 (0.57-0.71), (P=0.001). Results show that availability of screen devices at home is significantly related to children's screen viewing (RR (95% CI) =1.03 (0.64-1.65), P=0.03). The study found early exposure and early adaptation to screen-viewing in children due to several determinants, and suggests the need for anticipatory guidance to parents.

Accelerating Upstream Together: Achieving Infant Health Equity in the United States by 2030.

Accelerating Upstream Together: Achieving Infant Health Equity in the United States by 2030.

Differentiation of Pediatric-Onset Duchenne and Becker Muscular Dystrophy Subphenotypes Using Data from the Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet).

Duchenne muscular dystrophy (DMD) and Becker muscular dystrophy (BMD) phenotypes are used to describe disease progression in affected individuals. However, considerable heterogeneity has been observed across and within these two phenotypes, suggesting a spectrum of severity rather than distinct conditions. Characterizing the phenotypes and subphenotypes aids researchers in the design of clinical studies and clinicians in providing anticipatory guidance to affected individuals and their families. Using data from the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet), we used K-means cluster analysis to group phenotypically similar males with pediatric-onset dystrophinopathy. We identified four dystrophinopathy clusters: Classical BMD, Classical DMD, late ambulatory DMD, and severe DMD. The clusters that we identified align with both 'classical' and 'non-classical' dystrophinopathy described in the literature. Individuals with dystrophinopathies have heterogenous clinical presentations that cluster into phenotypically similar groups. Use of clinically-derived phenotyping may provide a clearer understanding of disease trajectories, reduce variability in study results, and prevent exclusion of certain cohorts from analysis. Findings from studying subphenotypes may ultimately improve our ability to predict disease progression.

Childhood Cancer Predisposition: An Overview for the General Pediatrician.

Cancer predisposition syndromes (CPS), or genetic syndromes leading to increased cancer risk, are responsible for at least 10% of all childhood cancers. With advances in both tumor and germline sequencing, these syndromes have been uncovered both in patients with and without syndromic features and family history of cancer. Recognition of CPS in children and use of associated screening guidelines can improve morbidity and mortality from childhood cancer. Given the multidisciplinary approach needed for management of CPS, knowledge of clinical features and surveillance guidelines are essential for the general pediatrician. Pediatricians also play a vital role in anticipatory guidance regarding cancer prevention strategies and management of psychosocial stressors associated with ongoing screening. This article discusses 10 of the more common pediatric CPS, reasons to refer patients for CPS genetic testing and evaluation, and general cancer prevention strategies. [Pediatr Ann. 2022;51(1):e15-e21.].

Care of the Immigrant Child.

Care of the Immigrant Child.

Reducing Implicit Bias in Maternity Care: A Framework for Action

Reducing Implicit Bias in Maternity Care: A Framework for Action

Non-Syndromic Generalized Radiculomegaly: A Brief Pediatric Case Series

Background: Radiculomegaly is an idiopathic root malformation characterized by abnormally long tooth roots and, consequently, an increased root-crown ratio of teeth. Although radiculomegaly is rare, non-syndromic radiculomegaly is highly rare. There are no reports of non-syndromic, generalized radiculomegaly affecting both primary and permanent dentition in pediatric patients. Description: This case series presents two unique pediatric cases of non-syndromic, generalized radiculomegaly affecting both primary and permanent dentition. Panoramic radiographs during mixed and permanent dentition were used to calculate root-crown ratios of all teeth to diagnose radiculomegaly. Concurrently, both cases also presented with hypodontia and gemination. These concurrent findings may point to an association of radiculomegaly with other specific tooth anomalies. This case series discusses diagnosis, management, and anticipatory guidance for individuals with radiculomegaly. Conclusion: Panoramic radiographs are vital for efficient diagnosis of radiculomegaly as such a diagnosis will impact future endodontic, orthodontic, and surgical management.

Multisystem Inflammatory Syndrome-Neonate: Biochemical Parameters as Early Marker of Adverse Neurodevelopmental Outcome

Background: Pregnant women and newborns are highly susceptible to Covid-19, manifesting as multisystem inflammatory syndrome-New-born (MISC-N) in many babies born to Covid positive mothers. The relationship between Covid-19 infection during pregnancy and neonatal neurodevelopmental outcome, if any, is unclear necessitating a follow-up study in this aspect. Methods: 16 babies with MIS-N, born to symptomatic Covid antibody positive mothers were enrolled. Demographic profile, treatment details and biochemical parameters were analyzed with neurodevelopmental follow-up. Results: 25% mothers received 2 doses of Covid vaccine; 50% had oligohydramnios and 75% received antenatal steroids. 87.5% were preterm of which 62.5% required surfactant with ventilator support and 75% required ionotropic support. Significant association was found between the antibody level and D-dimer levels with the ferritin and LDH levels of the baby (p 0.05); gestational age with LDH and D-dimer levels (p 0.05) and Covid antibody level of the baby vs the duration of ventilator requirement (P-value-0.0009). D-dimer values of babies were positively associated with both maternal antibody and D-dimer levels. Neurodevelopmental follow-up done at 6 months of corrected gestational age showed 37.5% were normal, 37.5% hypertonic and 25% hypotonic. HINE score was below 60 in 62.5%. Development assessment using Bayley-III showed a delay in the motor domain (62.5%), cognitive domain (56.25%) and language domain (62.5%). Conclusion: Neurodevelopmental problems occur in babies born to Covid positive mothers and should be stratified as “high risk”. Anticipatory guidance to prospective mothers for preterm care should be given. Covid antibody titre and D-dimer levels may help to predict the NICU stay, ventilator requirement and the adverse neurodevelopmental outcomes in these babies.