Pediatric Counseling Research Articles

Photoprotection in Pediatrics—An Important Part of Pediatric Counseling

Photoprotection in Pediatrics—An Important Part of Pediatric Counseling

Cancer predisposing syndrome: a retrospective cohort analysis in a pediatric and multidisciplinary genetic cancer counseling unit.

Approximately 10% of pediatric patients with cancer have an inherited, sometimes masked, cancer predisposition syndrome (CPS). Identifying patients with genetic susceptibility to malignant disease is essential for their correct diagnosis and clinical management. Here, we present the workflow and experience of a multidisciplinary cancer predisposition unit focused on pediatric patients with cancer. Between July 2018 and July 2020, 214 patients were diagnosed with pediatric cancer in our Hospital. Of all, 49 patients were treated at the CPS unit, 48 of whom were recommended a genetic study. Mutational analysis was performed on DNA from peripheral blood samples, with approximately 45% of the patients (n = 22) receiving a confirmed CPS diagnosis, all of whom underwent genetic counseling. These cases represent 20% of all pediatric cancers diagnosed in the same center during this period. Most of the patients were diagnosed with hereditary retinoblastoma; however, we also identified families with Li-Fraumeni syndrome, multiple endocrine neoplasia type 2, hereditary melanoma, hereditary leiomyomatosis, and Gardner syndrome. Despite its limitations regarding the type of tumors and number of patients included, this study revealed that implementing a specialized unit focused on children with cancer results in a higher diagnostic rate and better genetic counseling for patients with pediatric cancer predisposition syndromes.

Second trimester induced abortions due to fetal anomalies-a population-based study of diagnoses, examinations and clinical management.

Two-thirds of induced abortions after gestational week (gw) 18 are performed due to fetal anomalies. The potential of the fetus to survive outside the uterus after birth is the upper limit for induced abortions in Sweden. Due to advances in neonatal medicine, fetal viability and the upper limit of late induced abortions have been converging over the last few decades. The aim of the study was to examine clinical management of fetal anomalies, including time frames, leading to second trimester abortions. All induced abortions due to fetal anomalies after gw 11+6 in Uppsala county, Sweden, from 2010 to 2017, were reviewed from electronic medical records in a retrospective descriptive study. In total, 180 women underwent 185 abortions divided into 107 (57.8%) in an early group (gw 12+0 to 18+0), and 78 (42.2%) in a late group (≥ gw 18+1). Examinations performed were genetic testing, fetal echocardiography, magnetic resonance imaging (MRI) and pediatric counseling. Time frames from suspicion of fetal anomaly to abortion were reviewed. Anomalies were subdivided into groups of diagnosis: chromosomal (n=104), central nervous system (n=22), heart (n=12), urinary tract (n=10) and others (n=37). Chromosomal anomaly was present in 82 (76.6%) in the early group and 22 (28.2%) in the late group. In the early group, examinations performed preceding a conclusive diagnosis were mainly QF-PCR for trisomies (n=97), microarray (n=13), and genetic counseling (n=14). In the late group, trisomy test was performed in 68, microarray in 31, MRI in 24, fetal echocardiography in 28, and pediatric or genetic counseling in 43 and six cases, respectively. Mean time interval from suspicion of fetal anomaly to the woman's decision was 5days before gw 18+1, 7days in gw 18, and 13days in gw 21. More than two examinations before reaching the decision to terminate the pregnancy were needed in two abortions (25.0%) in gw 18, increasing to 16 (80.0%) in gw 21. Increasing complexity and diversity in fetal diagnoses require time-consuming examinations in late-induced abortions compared with earlier gestational weeks. A structured expedient process is necessary to allow for decision time and minimize terminations approaching the legal limit.

Exploring parents’ perceptions of the value of pediatric genetic counseling patient letters: A qualitative study presenting lessons learned

Genetic counseling patient letters are a valuable supplement to genetic counseling practice. As the demand for genetic services increases, improving efficiency in daily tasks such as letter writing could improve genetic counselor workflow. Additionally, understanding the value recipients place on the content of these letters prior to creating efficiencies is essential toward ensuring that the utility of these letters is not lost. To better understand parents' perceptions of the letter's value in the pediatric genetic counseling setting, we employed a qualitative design involving thirteen parents of children who received a patient letter following their diagnosis. Parents participated in a semi-structured focus group, interview, or phone interview, and the data were analyzed using thematic analysis. In addition to gathering perceptions of their child's letter, we sought to learn preferences for letter length, formatting, and level of detail by asking for verbal and written feedback on three different letter formats created for a fictional patient. We used self-determination theory (SDT) framework to create the sample letters, which states that an individual's experience of autonomy, competence, and relatedness can impact their ability to engage in activities. This includes caring for a child with special medical needs. While the findings from this work reinforced the importance of written communication for patients as seen in previous research, this work uncovered three major themes about the letter's value: (a) elements such as readability and content impact parent feelings of autonomy and improve competence moving forward with their child's care; (b) parents value written acknowledgment of the emotional impact of the diagnosis; and (c) parents use the letter as a tool to communicate their child's diagnosis with others. These results can be used for creating comprehensible patient letters that support autonomy, competence, and relatedness.

Influence of Osteopathic Medical Students' Personal Health on Attitudes Toward Counseling Obese Pediatric Patients.

Research has shown that physicians with positive health and lifestyle behaviors have more positive attitudes toward effective counseling, but little is known about how personal health behaviors of medical students influence their attitudes regarding pediatric obesity counseling before entering practice. To determine whether the personal health status and habits of osteopathic medical students influence their attitudes toward counseling obese pediatric patients regarding lifestyle behaviors. A cross-sectional survey was distributed electronically to first- through fourth-year osteopathic medical students. The survey assessed students' personal lifestyle habits and their top anticipated barriers to providing pediatric weight counseling. A total of 200 participants completed the survey. National physical activity recommendations were met by 81 participants (40.5%). These 81 participants had significantly more positive attitudes toward pediatric physical activity counseling than participants who did not meet the recommendations (H=-35.06, P=.001) or those who only met resistance training recommendations (H=40.63, P=.021). Participants with obesity had significantly lower pediatric weight management counseling scores than overweight participants (H=40.77, P=.028). Thirty-one participants (15.5%) consumed a healthy amount of both vegetables and fruit. These 31 participants had significantly higher dietary mean item counseling scores than those who did not (H=-30.40, P=.048). Participants identified the barriers "Time" (137 [68.5%]) and "Difficult for patients to change behavior" (99 [49.5%]) most frequently. Clinical participants identified "Poor or lacking reimbursement" (21 [28.0%]) more frequently than preclinical participants (12 [9.6]). Medical students who exhibited healthier lifestyle habits were more likely to positively view pediatric obesity management counseling.

Beyond Nutrition Knowledge and Tools-What Do Pediatric Providers Really Need?

Nutrition counseling continues to be a concern for pediatric providers. This study aimed to extend the understanding of the perceptions of pediatric providers regarding nutrition care. Individual semi-structured qualitative interviews were conducted using a purposive sampling technique. Interviews were conducted in-person or via telephone, recorded, and transcribed. Seven themes emerged from the data and these can be used as a "how to" for medical educators. Based on the experiences and perspectives of the pediatric providers in our study, we are moving forward with the systematic development of a curriculum to improve nutrition care and counseling in pediatrics.

Genetic Counseling in Pediatrics.

Genetic counseling is a communication process whereby an individual or family obtains information about a genetic condition, is helped to understand the implications and significance of the condition, and is given resources to help with coping and management. It is a continuous process involving lasting supportive relationships between the family and the genetic professional. Genetic counselors are master's level-trained health-care professionals who work closely with pediatricians and pediatric subspecialists alike. Genetic counselors can be a source of information about genetic conditions, risk assessment for disease, and genetic testing. Although most of a genetic counselor's job is patient care and education, genetic counselors also serve as resources to educate health professionals about genetics.

Surveys for Smiles: Improving oral health outcomes through structured counseling in ambulatory pediatrics

Purpose: Early childhood caries is the most common chronic disease in children. Tooth decay can impair a child’s overall health, speech development, growth, school performance, and psychosocial wellbeing. A rising concern about the impact of dental disease on overall health and poor utilization rates of dental care services led to Healthy People 2020 identifying the annual use of dental care for every person aged 2 years and older as 1 of 24 leading health indicators. The AAP and AAPD advocate for dental examinations by 12 months of age. However, data continues to show a significant …

Surveys for Smiles: Improving oral health outcomes through structured counseling in ambulatory pediatrics

Surveys for Smiles: Improving oral health outcomes through structured counseling in ambulatory pediatrics

A quality improvement program in pediatric practices to increase tailored injury prevention counseling and assess self-reported changes made by families

BackgroundMany pediatric providers struggle to screen families for the majority of age-appropriate injury risks and educate them when appropriate. Standardized tools have helped physicians provide effective, more purposeful counseling. In this study, pediatricians utilized a standardized, injury prevention screening tool to increase targeted discussions and families were re-screened at subsequent visits to determine changes in their behavior.MethodsPediatric practices, recruited from the Ohio Chapter, American Academy of Pediatrics database, self-selected to participate in a quality improvement program. Two screening tools, for children birth-4 month and 6–12 month, with corresponding talking points, were to be implemented into every well child visit. During the 7-month collaborative, screening results and pediatrician counseling for reported unsafe behaviors were calculated. Patients who completed a screening tool at subsequent visits were followed up at a later visit to determine self-reported behavior changes. We examined statistically significant differences in frequencies using the X2 test. Providers received maintenance of certification IV credit for participation.ResultsSeven practices (39 providers) participated. By the second month, participating providers discussed 75% of all inappropriate responses for birth-4 month screenings and 87% for 6–12 months. Of the 386 families who received specific counseling and had a follow-up visit, 65% (n = 94/144) of birth-4 month and 65% (n = 59/91) of 6–12 month families made at least one behavior change. The X2 test showed that families who received counseling versus those that did not were significantly more likely to change inappropriate behaviors (p < 0.05). Overall, of all the risks identified, 45% (136) of birth-4 month and 42% (91) of 6–12 month behaviors reportedly changed after a practitioner addressed the topic area.ConclusionsParticipation in a quality improvement program within pediatric offices can increase screening for injury risks and encourage tailored injury prevention discussions during an office encounter. As a result, significantly more families reported to practice safer behaviors at later visits.

Diagnosis of Pregnancy and Providing Options Counseling for the Adolescent Patient.

The American Academy of Pediatrics policy statement "Options Counseling for the Pregnant Adolescent Patient" recommends the basic content of the pediatrician's counseling for an adolescent facing a new diagnosis of pregnancy. However, options counseling is just one aspect of what may be one of the more challenging scenarios in the pediatric office. Pediatricians must remain alert to the possibility of pregnancy among their adolescent female patients. When discovering symptoms suggestive of pregnancy, pediatricians must obtain a relevant history, perform diagnostic testing and properly interpret the results, and understand the significance of the results from the patient perspective and reveal them to the patient in a sensitive manner. If the patient is indeed pregnant, the pediatrician, in addition to providing comprehensive options counseling, may need to help recruit adult support for the patient and should offer continued assistance to the adolescent and her family after the office visit. All pediatricians should be aware of the legal aspects of adolescent reproductive care and the resources for pregnant adolescents in their communities. This clinical report presents a more comprehensive view of the evaluation and management of pregnancy in the adolescent patient and a context for options counseling.

Pediatric medication use experiences and patient counseling in community pharmacies: Perspectives of children and parents

ObjectivesThis study aimed to explore the perspectives of children and parents regarding: 1) pediatric patients' knowledge and medication use experiences for chronic conditions; 2) how they want to learn about medicines; and 3) perceptions of community pharmacist–provided counseling. DesignQualitative study using semistructured interviews and thematic analyses. SettingThree community pharmacies in 2 eastern states: one in rural western North Carolina, and 2 in an urban region of western Pennsylvania. ParticipantsA total of 39 study participants: 20 children using medications for chronic conditions and 19 parents interviewed July-December 2015. Main outcome measuresChild and parent perspectives regarding pediatric medication use, knowledge, experiences, and pharmacist-provided patient counseling. ResultsChildren and parents had similar perspectives on pediatric medication use and pharmacist counseling experiences. Six themes emerged: 1) child's knowledge, self-management, and medication use experiences; 2) essential medication information and sources; 3) child's frequent absence from the pharmacy; 4) patient counseling needs and recommendations; 5) use of interactive technologies to facilitate learning about medicines; and 6) perceptions of pharmacists. Participants reported that children were independently managing their medications, although they had minimal knowledge about medicines. Children and parents stated that the child's absence during medication pick-up at pharmacies was a barrier to receiving counseling by pharmacists. Children were comfortable and receptive to pharmacists educating them about their medicines, particularly how medications affect the human body, how they were manufactured, and research studies on their medications. Parents and children recommended the use of interactive and educational technologies for pediatric counseling. ConclusionChildren are frequently not present at pharmacies during prescription pick-up; however, children and parents are comfortable with and receptive to pediatric medication counseling by pharmacists. Interactive and educational technologies need to be developed and used by pharmacists to facilitate counseling and educate children about the effective and safe use of medicines.

A Call for Fertility and Sexual Function Counseling in Pediatrics.

* Abbreviation: AAP — : American Academy of Pediatrics During a pediatric endocrinology clinic visit, a 16-year-old boy presented with his family for evaluation of his endocrine axes due to history of bone marrow transplantation. He had previously been followed elsewhere; transfer records stated his family had been told that his fertility was likely to be impaired, but his parents had not shared this with him. It was also unclear from review of the notes whether any discussions regarding sexual function had occurred. Historically, reproductive health in pediatrics has focused primarily on contraception and prevention of sexually transmitted infections. However, there is now a growing body of literature discussing the long-term impact of many pediatric conditions and treatments on fertility and sexual function, such as oncologic therapy, hematologic or autoimmune conditions requiring bone marrow transplantation, renal and rheumatologic disorders in which alkylators are used, cross-sex hormonal therapy used in the care of transgender youth, disorders of sex development, and other genetic syndromes such as galactosemia. Pediatric providers face dilemmas about the optimal approaches for assessing and discussing fertility and sexual function with patients and families, the type of guidance to give to parents about related communications with their children at each developmental stage, and ethical obligations regarding disclosure when parents are opposed to sharing sensitive information with their children. Decades ago, the nondisclosure approach to sensitive … Address correspondence to Leena Nahata, MD, Nationwide Children’s Hospital, 700 Children’s Dr, Columbus, OH 43205. E-mail: leena.nahata{at}nationwidechildrens.org

Feasibility of a Pediatric Inpatient Secondhand Smoke Exposure Screening and Counseling Program

Feasibility of a Pediatric Inpatient Secondhand Smoke Exposure Screening and Counseling Program

A pilot randomized controlled trial of a behavioral family-based intervention with and without home visits to decrease obesity in preschoolers.

Tested two family-based behavioral treatments for obesity in preschool children, one meeting the Expert Committee guidelines for Stage 3 obesity intervention criteria (LAUNCH-clinic) and one exceeding Stage 3 (LAUNCH with home visit [LAUNCH-HV]), compared with a Stage 1 intervention, pediatrician counseling (PC). In all, 42 children aged 2-5 years with a body mass index (BMI) percentile of ≥95th were randomized. A total of 33 met intent-to-treat criteria. Assessments were conducted at baseline, Month 6 (posttreatment), and Month 12 (6-month follow-up). LAUNCH-HV demonstrated a significantly greater decrease on the primary outcome of change in BMI z-score (BMIz) pre- to posttreatment compared with PC (p = .007), whereas LAUNCH-clinic was not significantly different from PC (p = .08). Similar results were found for secondary outcomes. LAUNCH-HV, but not LAUNCH-clinic, significantly reduced BMIz compared with PC by posttreatment, indicating the need for intensive behavioral intervention, including home visitation, to address weight management in obese preschool children.

Impact of 2010 Ghent criteria and subgroups definition to optimize diagnosis, avoid aortic dissection and choose the right surgical timing in the experience of the Tor Vergata Marfan Centre registry

Purpose: Aim of this study was to verify how Marfan Syndrome (MFS) patients followed by our Centre were distributed in the different subgroups highlighted by new 2010 Ghent nosology: 3 in the presence of family history (FH), FH and aortic dilatation (Ao), FH e score system ≥7 (SS), FH and ectopia lentis (EL), 4 in the absence of family history (Ao e EL, Ao e SS, Ao e FBN1, EL e FBN1 mutation) and to define the impact of aortic root dilatation in the diagnosis of the syndrome to support a cardiac surgery department's management of a Marfan Diagnostic Centre. Methods: We reviewed clinical features of 500 subjects visited in our Centre from January 2008 to December 2012; 146 patients (74 men and 72 women) had MFS clinical diagnosis. The population included 29 children (age 40 y). All patients was submitted to echocardiographic exam and measurement of aortic root along the American Society of Echocardiography guidelines, genetic advice, orthopedic visit, eye and dental examination and pediatric counseling, the last for patients younger than 14 y. In all cases spine and hips X-ray were performed. Results: In presence of family history 78 patients (53%) were in FH and Ao subgroup, 8 patients (5,4%) in FH and SS and 3 (2%) in FH and EL. In 45 patients the was no FH and the diagnosis was possible for the concomitance of Ao and EL in 33 patients (22%), of Ao and SS in 20 (13%), in 2 cases (1,3%) for Ao and FBN1 mutation, and in 2 cases (1,3%) for EL and FBN1 gene mutation. Among the 78 patients with FH, 32 belong to one big kin family with high incidence of sudden cardiac death for dissection. Main characteristics in our population were aortic dilation with Z-score ≥2 in adults and ≥3 in children present in 133 (91%) patients, FH in 89 (61%), SS≥7 in 55 (37%), ectopia lentis in 36 (24%), the FBN1 mutation response was present in 31 (21%). Fifty-four patient (37%) underwent to cardiac surgery, 50 patient for aortic root replacement and 4 patients for mitral valve procedure. We had no deaths for aortic dissection in 4 years of observation. Conclusions: New 2010 Ghent Criteria allow an excellent clinical definition of MFS and a rapid diagnosis thanks the possibility to include patients in a specific subgroup. Aortic dilation was the main feature of our population. A clear diagnosis and a cardiac surgery vision of follow-up are crucial for an optimal management and surgical decision.

Differing Attitudes Toward Fetal Care by Pediatric and Maternal-Fetal Medicine Specialists

The expansion of pediatric-based fetal care raises questions regarding pediatric specialists' involvement in pregnancies when maternal conditions may affect pediatric outcomes. For several such conditions, we compared pediatric and obstetric specialists' attitudes regarding whether and when pediatrics consultation should be offered and their views about seeking court authorization to override maternal refusal of physician recommendations. We used a mail survey of 434 maternal-fetal medicine specialists (MFMs) and fetal care pediatric specialists (FCPs) (response rate: MFM, 60.9%; FCP, 54.2%). FCPs were more likely than MFMs to indicate that pediatric counseling should occur before decisions regarding continuing or interrupting pregnancies complicated by maternal alcohol abuse (FCP versus MFM: 63% vs 36%), cocaine abuse (FCP versus MFM: 60% vs 32%), use of seizure medications (FCP versus MFM: 62% vs 33%), and diabetes (FCP versus MFM: 56% vs 27%) (all P < .001). For all conditions, MFMs were more than twice as likely as FCPs to think that no pediatric specialist consultation was ever necessary. FCPs were more likely to agree that seeking court interventions was appropriate for maternal refusal to enter a program to discontinue cocaine use (FCP versus MFM: 72% vs 33%), refusal of azidothymidine to prevent perinatal HIV transmission (80% vs 41%), and refusal of percutaneous transfusion for fetal anemia (62% vs 28%) (all P < .001). Pediatric and obstetric specialists differ considerably regarding pediatric specialists' role in prenatal care for maternal conditions, and regarding whether to seek judicial intervention for maternal refusal of recommended treatment.

Use of Electronic Medical Records Increases Rates of Obesity Diagnosis and Counseling

Evidence-based strategies to prevent and manage childhood and adolescent obesity in primary care include periodic measurement of weight and height, plotting body-mass index (BMI) on growth charts, and exercise and nutritional counseling. To determine if an electronic medical record (EMR) initiative at a large health maintenance organization (HMO) helped standardize pediatric weight management and counseling, researchers analyzed data from 2007 through 2010 for an average of 240,000 annual …

A Pilot Randomized Controlled Trial of a Clinic and Home‐Based Behavioral Intervention to Decrease Obesity in Preschoolers

We evaluated the efficacy of a 6-month clinic and home-based behavioral intervention (Learning about Activity and Understanding Nutrition for Child Health; LAUNCH) to reduce obesity in preschool children ≥95th BMI percentile compared to enhanced standard of care (Pediatrician Counseling; PC). LAUNCH was a family-based behavioral intervention that taught parents to use child behavior management strategies to increase healthy eating and activity for their children and themselves. PC presented the same diet and activity recommendations, but was delivered in a one-time PC session. Eighteen children aged 2-5 years (mean 4.71 ± 1.01) with an average BMI percentile of 98 (±1.60) and an overweight parent were randomized to LAUNCH or PC. Assessments were conducted at baseline, 6 months (end of LAUNCH treatment) and 12 months (6 months following LAUNCH treatment). LAUNCH showed a significantly greater decrease on the primary outcomes of child at month 6 (post-treatment) BMI z (-0.59 ± 0.17), BMI percentile (-2.4 ± 1.0), and weight gain (-2.7kg ± 1.2) than PC and this difference was maintained at follow-up (month 12). LAUNCH parents also had a significantly greater weight loss (-5.5kg ± 0.9) at month 6 and 12 (-8.0kg ± 3.5) than PC parents. Based on the data from this small sample, an intensive intervention that includes child behavior management strategies to improve healthy eating and activity appears more promising in reducing preschool obesity than a low intensity intervention that is typical of treatment that could be delivered in primary care.

P34.14: Brachmann‐de Lange syndrome: antenatal diagnosis in two consecutive pregnancies due to rare gonadal mosaicism of NIPBL gene mutation

We report on a 35-year old gravida, who was referred to our ultrasound unit for targeted ultrasound examination. She had an uneventful prior delivery and a previous spontaneous abortion. Both parents were healthy and phenotypically normal. The mother had a history of antihypertensive drug treatment and suffered from moderate obesity. The first trimester scan appeared to be normal. However, biochemical testing revealed an elevated risk for trisomy 13/18. After genetic counseling the patients decided to undergo invasive karyotyping. The amniocentesis revealed a normal female karyotype. A follow-up scan at 18 gestational weeks showed a distal micromelia of both forearms, abnormal profile and microretrognathia. Thus, an underlying syndromal genetic disorder was assumed, such as Brachmann-de Lange syndrome (BdL) potentially affecting mental health in later infancy. After comprehensive genetic and pediatric counseling the parents opted for termination of the pregnancy. Molecular genetic investigation finally established the diagnosis of a BdL syndrome with a heterozygous nonsense-mutation in exon 29 of the NIPBL-gene. No such mutation was found in both parents. Due to the possibility of a rare gonadal mosaicism in one of the parents detailed prenatal scans in the next pregnancy were advocated. Surprisingly, detailed anatomical survey during the subseqent pregnancy showed similar limb reduction deformities of both forearms and an abnormal profile of the fetus at 14 weeks. A chorionic villous sampling was done for karyotyping and mutational analysis in the NIPBL-gene. This fetus again showed a normal female karyotype but the identical genetic alteration. In fact, a parental gonadal mosaicism was causative for recurrent BdL syndrome. The pregnancy was terminated on parental request. Psychological and genetical counseling was offered to the parents. The recurrence risk for BdL syndrome is verifiably elevated. The parents are still double-minded regarding a further pregnancy.