Healthcare team communication training in the United States: A scoping review.

The purpose of this literature review was to identify interventions designed to improve healthcare team communication in the United States. We conducted a review of peer-reviewed, English-language articles describing interventions aimed at improving healthcare team communication. We analyzed articles that met pre-specified inclusion and exclusion criteria and characterized who is testing communication interventions, the rationale for testing, and ways of measuring effectiveness. We descriptively categorized the strength and types of study findings. Thirty articles were retained in our analysis. Most assessments were conducted by academic medical centers, the Veterans Health Administration, and teaching hospitals. Interventions sought to improve teamwork, patient safety, clinical outcomes, costs of care, and enhance provider job satisfaction and well-being. Intervention strategies included didactic lectures, simulation, Crew Resource Management, quality improvement, or a combination of these approaches. The vast majority employed a pre-post survey design and measured outcomes using participant feedback. Many assessments failed to utilize a social science theory or communication-specific measures. Interventions with the best training content were conducted at academic medical centers, used a pre-post design, and utilized statistical analysis to analyze results. While interventions for improving healthcare team communication are diverse and have uneven effectiveness, early markers of success merit continued development and assessment.

Pediatrician Adherence to Guidelines for Diagnosis and Management of High Blood Pressure.

OBJECTIVES: To assess pediatrician adherence to the 2017 American Academy of Pediatrics' clinical practice guideline for high blood pressure (BP). STUDY DESIGN: Pediatric primary care practices (n = 59) participating in a quality improvement collaborative submitted data for patients with high BP measured between November 2018 and January 2019. Baseline data included patient demographics, BP, body mass index (BMI), and actions taken. Logistic regression was used to test associations between patient BP level and BMI with provider adherence to guidelines (BP measurement, counseling, follow-up, evaluation). RESULTS: A total of 2677 patient charts were entered for analysis. Only 2% of patients had all BP measurement steps completed correctly, with fewer undergoing 3-limb and ambulatory BP measurement. Overall, 46% of patients received appropriate weight, nutrition, and lifestyle counseling. Follow-up for high BP was recommended or scheduled in 10% of encounters, and scheduled at the appropriate interval in 5%. For patients presenting with their third high BP measurement, 10% had an appropriate diagnosis documented, 2% had appropriate screening laboratory tests conducted, and none had a renal ultrasound performed. BMI was independently associated with increased odds of counseling, but higher BP was associated with lower odds of counseling. Higher BP was independently associated with an increased likelihood of documentation of hypertension. CONCLUSIONS: In this multisite study, adherence to the 2017 American Academy of Pediatrics' guideline for high BP was low. Given the long-term health implications of high BP in childhood, it is important to improve primary care provider recognition and management. TRIAL REGISTRATION: ClinicalTrials.gov: NCT03783650.

Vulnerable Child Syndrome and Newborn Screening Carrier Results for Cystic Fibrosis or Sickle Cell.

OBJECTIVES: To measure parental perceptions of child vulnerability, as a precursor to developing a population-scale mechanism to mitigate harm after newborn screening. STUDY DESIGN: Participants were parents of infants aged 2-5 months. Parental perceptions of child vulnerability were assessed with an adapted version of the Vulnerable Baby Scale. The scale was included in the script for a larger study of telephone follow-up for 2 newborn blood screening samples (carrier status for cystic fibrosis or sickle cell hemoglobinopathy). A comparison sample was added using a paper survey with well-baby visits to an urban/suburban clinic. RESULTS: Sample sizes consisted of 288 parents in the cystic fibrosis group, 426 in the sickle cell hemoglobinopathy group, and 79 in the clinic comparison group. Parental perceptions of child vulnerability were higher in the sickle cell group than cystic fibrosis group (P < .0001), and both were higher than the clinic comparison group (P < .0001). Parental perceptions of child vulnerability were inversely correlated with parental age (P < .002) and lower health literacy (P < .015, sickle cell hemoglobinopathy group only). CONCLUSIONS: Increased parental perceptions of child vulnerability seem to be a bona fide complication of incidental newborn blood screening findings, and healthcare professionals should be alert to the possibility. From a public health perspective, we recommend routine follow-up after incidental findings to mitigate psychosocial harm.

How a baby with classic galactosemia was nearly missed: When the test succeeds but system fails.

Newborn screening (NBS) is a well-established state-run public health program which has targeted the early identification of treatable diseases like classic galactosemia (CG) for over a decade. We describe the case of a symptomatic newborn with CG and an abnormal screen report, including positive DNA-based test, who still managed to fall through the cracks in a sub-optimally functioning NBS program, despite decades of screening experience. While much attention is paid to testing technology, this case illustrates basic minimum requirements a newborn screening program must fulfill to reliably identify and treat all affected individuals including minimum reporting requirements, case surveillance and a dedicated short-term follow-up program. In newborn screening, success is systematic.

Systems Integration: The Next Frontier in Newborn-Screening Timeliness.

CONTEXT: In 2015, the United States Federal Advisory Committee on Heritable Disorders in Newborns and Children issued recommendations for state-based newborn screening programs to benchmark improvements in newborn-screening timeliness. Newborn screening (NBS) timeliness encompasses the efficient collection, transportation, testing, and reporting of results. Nearly all state programs fail to achieve recommended timeliness benchmarks. OBJECTIVES: Our study explored the processes and procedures that accelerate or hamper progress toward improving NBS timeliness from a public health laboratory program perspective. DESIGN: We conducted semistructured interviews to elicit public health laboratory perspectives on NBS specimen delivery, laboratory testing and processing, communication of results to birthing providers, program staffing, and quality measures and data sharing. A content analysis explored practices, processes, and procedures related to NBS timeliness. A secondary analysis examined interorganizational strategies to enhance timeliness outcomes among NBS stakeholders. PARTICIPANTS: Ten laboratories participated in the study (n = 21 personnel). Participants included public health laboratory directors, NBS program managers, and NBS follow-up program staff. RESULTS: Efforts to improve NBS timeliness included engaging birthing providers, expanding courier services, extending operating hours, modifying staffing schedules, and implementing cross-training schedules to facilitate prompt collection, transport, and processing of NBS specimens. Sustained improvements will require implementing robust data systems, integrating laboratory and follow-up processes, and improving communication among all NBS stakeholders. Programs expressed a desire to refine timeliness metric definitions to ensure useful comparisons across states. CONCLUSIONS: Efforts to improve timeliness have accelerated in recent years; sustained progress will require increased coordination and integration among stakeholders in the NBS delivery system.

An Assessment of Public Preferences for Newborn Screening Using Best-Worst Scaling.

OBJECTIVE: To identify and quantify public preferences for attributes of newborn screening conditions. STUDY DESIGN: We conducted an online national survey of the public (n = 502) to evaluate preferences for attributes of candidate newborn screening conditions. Respondents were presented with hypothetical condition profiles that were defined using 10 attributes with 2-6 levels per attribute. Participants indicated whether they would recommend screening for a condition and which condition attributes were most and least important when making this decision (best-worst scaling). Difference scores were calculated and stratified by condition recommendation (recommend or not recommend for screening). Regression analyses were used to evaluate the effect of attributes on choice to screen or not screen. RESULTS: The number of babies diagnosed was important to those who would recommend newborn screening for a profile, and age at which the treatment would start was important to those who would not recommend newborn screening. Cost was considered to be a key attribute, and treatment effectiveness and impact of making the diagnosis through newborn screening were of low importance for both groups. CONCLUSION: Public preferences identified through survey methods that provide an adequate baseline understanding of newborn screening can be used to inform newborn screening decisions.

Newborn Screening Collection and Delivery Processes in Michigan Birthing Hospitals: Strategies to Improve Timeliness.

Objectives This study aimed to determine which steps in the newborn screening collection and delivery processes contribute to delays and identify strategies to improve timeliness. Methods Data was analyzed from infants (N = 94,770) who underwent newborn screening at 83 hospitals in Michigan between April 2014 and March 2015. Linear mixed effects models estimated effects of hospital and newborn characteristics on times between steps in the process, whereas simulation explored how to improve timeliness through adjustments to schedules for the state laboratory and for specimen pickup from hospitals. Results Time from collection to receipt of arrival to the state laboratory varied greatly with collection timing (P < 0.001), with specimens collected on Friday or Saturday delayed an average of 9-12 h compared to other specimens. Simulation estimates shifting specimen pickup from 6 p.m. Sunday-Friday to 9 p.m. Sunday-Friday could lead to an additional 12.6% of specimens received by the Michigan laboratory within 60 h of birth. Conclusions for Practice The time between when a specimen is collected and received by the laboratory can be a significant bottleneck in the newborn screening process. Modifying hospital pickup schedules appears to be a simple way to improve timeliness.

Growing up in the genomic era: implications of whole-genome sequencing for children, families, and pediatric practice.

Whole-genome sequencing (WGS) has advanced to a point where it is beginning to be integrated into pediatric practice. With little consensus on how to maximize the benefits of WGS for children, there is a growing need for focused efforts that connect researchers, clinicians, and families to chart a path forward. To illustrate relevant concerns, two contrasting applications of pediatric WGS are explored: clinical use with children who have undiagnosed conditions, and population-based screening. Specific challenges for health care services, policy development, and the well-being of children are discussed in light of current research. In the interest of ensuring evidence-based pediatric WGS, strategies are identified for advancing our understanding of what it means for children to grow up with WGS results guiding their health care.

Ethical issues with newborn screening in the genomics era.

Continued technological advances have made the prospect of routine whole-genome sequencing (WGS) imminent. To date, much of the discussion about WGS has focused on its application and use in clinical medicine. Relatively little attention has been paid to the potential integration of WGS into newborn screening programs. Given the structure and scope of these programs, it is possible that the early applications of WGS will occur in state-run newborn screening programs. Assessment of the pressing ethical issues currently facing the newborn screening community will provide insight into the challenges that lie ahead in the genomics era.

Primary-care providers' perceived barriers to integration of genetics services: a systematic review of the literature.

PURPOSE: We aimed to systematically review the literature to identify primary-care providers' perceived barriers against provision of genetics services. METHODS: We systematically searched PubMed and ERIC using key and Boolean term combinations for articles published from 2001 to 2012 that met inclusion/exclusion criteria. Specific barriers were identified and aggregated into categories based on topic similarity. These categories were then grouped into themes. RESULTS: Of the 4,174 citations identified by the search, 38 publications met inclusion criteria. There were 311 unique barriers that were classified into 38 categories across 4 themes: knowledge and skills; ethical, legal, and social implications; health-care systems; and scientific evidence. Barriers most frequently mentioned by primary-care providers included a lack of knowledge about genetics and genetic risk assessment, concern for patient anxiety, a lack of access to genetics, and a lack of time. CONCLUSION: Although studies reported that primary-care providers perceive genetics as being important, barriers to the integration of genetics medicine into routine patient care were identified. The promotion of practical guidelines, point-of-care risk assessment tools, tailored educational tools, and other systems-level strategies will assist primary-care providers in providing genetics services for their patients.

Primary Care Providers' Initial Evaluation of Children with Global Developmental Delay: A Clinical Vignette Study.

OBJECTIVE: To examine the decisions of pediatric primary care physicians about their diagnostic evaluation for a child with suspected global developmental delay (GDD). STUDY DESIGN: A survey was mailed to a sample of pediatricians (n = 600) and family physicians (n = 600) randomly selected from the American Medical Association Physician Masterfile. The survey contained a clinical vignette describing a 9-month-old nondysmorphic boy with GDD. Participants were asked their initial evaluation steps (test, refer, or both test and refer) and what types of referral and/or testing they would pursue. We examined bivariate associations between physician/clinical practice characteristics and participants' evaluation decision. RESULTS: More pediatricians than family physicians completed the survey (response rates: 55% vs 38%). Almost three-quarters of the respondents (74%) reported that their first step in a diagnostic evaluation would be to refer the child without testing, 22% would test only, and 4% would both test and refer. As their initial step, most physicians referred to a developmental pediatrician (58%), and only 5% would refer to a geneticist. The most commonly ordered test was general biochemical testing (64%). The most commonly ordered genetic test was a karyotype (39%). CONCLUSIONS: When evaluating a child with GDD, few primary care physicians would order genetic testing or refer to a genetics specialist as a first evaluation step. Future studies should examine both barriers to and utilization of a genetic evaluation for children with GDD.

Framing optional genetic testing in the context of mandatory newborn screening tests.

BACKGROUND: Parents are increasingly faced with decisions about optional newborn bloodspot screening (NBS) despite no consistent policy for communicating information about such testing. We examined whether framing optional NBS alongside mandatory NBS influenced intention to participate in optional NBS. METHODS: For this Internet-administered study, 2,991 adults read a hypothetical vignette in which optional NBS for Duchenne muscular dystrophy (DMD) was either presented by itself (in isolation), alongside a description including the total number of mandatory NBS tests ("bundled" mandatory context), or alongside a listing of each mandatory NBS test ("unbundled" mandatory context). We assessed associations with participants' intended participation using ordered logistic regression models, and associations with attitudes towards optional DMD NBS and subjective norms using Analysis of Variance. RESULTS: Participants were more likely to choose optional DMD NBS if they also read information about mandatory NBS (either bundled or unbundled) versus when DMD NBS was presented in isolation. Participants who read about optional DMD NBS in isolation also reported such testing to be less important and that they would worry more about the results than those who also saw mandatory NBS information. CONCLUSIONS: Future NBS programs should pay attention to the framing of optional testing communication, as it influences parental behavior. Predictors of NBS uptake will become increasingly important as NBS programs continue expanding.

Parents' interest in whole-genome sequencing of newborns.

PURPOSE: The aim of this study was to assess parents' interest in whole-genome sequencing for newborns. METHODS: We conducted a survey of a nationally representative sample of 1,539 parents about their interest in whole-genome sequencing of newborns. Participants were randomly presented with one of two scenarios that differed in the venue of testing: one offered whole-genome sequencing through a state newborn screening program, whereas the other offered whole-genome sequencing in a pediatrician's office. RESULTS: Overall interest in having future newborns undergo whole-genome sequencing was generally high among parents. If whole-genome sequencing were offered through a state's newborn-screening program, 74% of parents were either definitely or somewhat interested in utilizing this technology. If offered in a pediatrician's office, 70% of parents were either definitely or somewhat interested. Parents in both groups most frequently identified test accuracy and the ability to prevent a child from developing a disease as "very important" in making a decision to have a newborn's whole genome sequenced. CONCLUSION: These data may help health departments and children's health-care providers anticipate parents' level of interest in genomic screening for newborns. As whole-genome sequencing is integrated into clinical and public health services, these findings may inform the development of educational strategies and outreach messages for parents.

Genetic services and attitudes in primary care pediatrics.

Given the integral role primary care pediatricians (PCPs) play in caring for children with genetic conditions, we aimed to identify current practices of PCPs regarding genetic patients, their attitudes toward genetic medical care and their choices regarding family history taking. We conducted an on-line survey of a national convenience sample of PCPs associated with the American Academy of Pediatrics' Quality Improvement Innovation Networks. Eighty-eight respondents (29% response rate) were included in the analysis. Seventy-four (86%) reported ordering genetic based tests three or less times annually. Eleven (13%) strongly agreed that they discuss with patients the potential risks, benefits, and limitations of genetic tests. Forty-three (49%) agreed or strongly agreed that they feel competent in providing healthcare to patients related to genetics and genomics. Perceived competence was not associated with more recent training (P = 0.29), number of genetic tests ordered annually (P = 0.84) or mean number of weekly patient encounters (P = 0.15). 100% of participants stated that taking a family history is important. 27 (31%) agreed or strongly agreed that they gather a minimum of a three-generation family history. Forty-one of the 63 participants with an electronic health record (65%) reported their system was fair or poor in its ability to easily capture a three-generation family history. PCPs interested in quality improvement reported variation in care practices for children with genetic diseases and a majority did not feel competent to provide genetic related healthcare. Research should focus on improving the care and diagnosis of children with genetic disorders and enhanced integration of genetic medicine into routine primary preventative care.

Effects of undergoing multiplex genetic susceptibility testing on parent attitudes towards testing their children.

BACKGROUND: Parents may pursue common disease risk information about themselves via multiplex genetic susceptibility testing (MGST) for their children. PURPOSE: To prospectively assess whether parents who received MGST disclosed their test results to their child, intended to change the child's health habits, or have the child tested. METHODS: Eighty parents who opted for free MGST completed an online survey about a child in their household before undergoing MGST and a follow-up telephone survey 3 months after receiving results. RESULTS: Few parents (21 %) disclosed results to the child. Undergoing MGST was unrelated to intentions to change the child's health habits but did increase parental willingness to test the child. Greater willingness to test a child was associated with positive attitudes toward pediatric genetic testing and intentions to change the child's health habits. CONCLUSION: The experience of receiving MGST had little impact on parents' perceptions or behaviors related to their minor child.

Decision analysis, economic evaluation, and newborn screening: challenges and opportunities.

The number of conditions included in newborn screening panels has increased rapidly in the United States during the past decade, and many more conditions are under consideration for addition to state panels. The rare nature of candidate conditions for newborn screening makes their evaluation challenging. The scarcity of data on the costs of screening, follow-up, treatment, and long-term disability must be addressed to improve the evaluation process for nominated conditions. Decision analyses and economic evaluations can help inform policy decisions for newborn screening programs by providing a systematic approach to synthesizing available evidence and providing projected estimates of long-term clinical and economic outcomes when long-term data are not available. In this review, we outline the types of data required for the development of decision analysis and cost-effectiveness models for newborn screening programs and discuss the challenges faced when applying these methods in the arena of newborn screening to help inform policy decisions.Genet Med advance online publication 5 April 2012.

A risk score for identifying overweight adolescents with dysglycemia in primary care settings.

OBJECTIVE: To develop a clinical risk scoring system for identifying adolescents with dysglycemia (prediabetes or diabetes) who need further confirmatory testing and to determine whether the addition of non-fasting tests would improve the prediction of dysglycemia. STUDY DESIGN: A sample of 176 overweight and obese adolescents (10-17 years) had a history/physical exam, a 2-h oral glucose tolerance test, and non-fasting tests [hemoglobin A1c, 1-h glucose challenge test (GCT), and random glucose test] performed. Given the low number of children with diabetes, we created several risk scoring systems combining the clinical characteristics with non-fasting tests for identifying adolescents with dysglycemia and compared the test performance. RESULTS: Sixty percent of participants were white and 32% were black; 39.2% had prediabetes and 1.1% had diabetes. A basic model including demographics, body mass index percentile, family history of diabetes, and acanthosis nigricans had reasonable test performance [area under the curve (AUC), 0.75; 95% confidence interval (95% CI), 0.68-0.82]. The addition of random glucose (AUC, 0.81; 95% CI, 0.75-0.87) or 1-h GCT (AUC, 0.82; 95% CI, 0.75-0.88) to the basic model significantly improved the predictive capacity, but the addition of hemoglobin A1c did not (AUC, 0.76; 95% CI, 0.68-0.83). The clinical score thresholds to consider for the basic plus random glucose model are total score cutoffs of 60 or 65 (sensitivity 86% and 65% and specificity 60% and 78%, respectively) and for the basic plus 1-h GCT model are total score cutoffs of 50 or 55 (sensitivity 87% and 73% and specificity 59% and 76%, respectively). CONCLUSIONS: Pending a validation in additional populations, a risk score combining the clinical characteristics with non-fasting test results may be a useful tool for identifying children with dysglycemia in the primary care setting.

Elevated Parental Stress Is Associated With Lower Self-Efficacy in Provider Communication During a Pandemic.

BACKGROUND: Effective communication between physician and parent promotes a successful alliance with families. The association of parental stress with self-efficacy when communicating during parent-physician interactions is unknown in the context of a pandemic. OBJECTIVES: Objectives of this study include quantifying and comparing the stress experienced by parents of hospitalized children before and after onset of the COVID-19 pandemic and examining the relationship of stress with self-efficacy in parent-physician communication during interactions throughout hospitalization. METHODS: We conducted in-person surveys of parents of children aged 3 months to 17 years hospitalized at a quaternary-level children's hospital, before and after onset of COVID-19. Parents completed 2 validated tools: Parenting Stress Index (PSI-SF) and the Perceived Efficacy in Parent-Physician Interactions (PEPPI), measuring self-efficacy in communicating with physicians. Socioeconomic data were collected. Fisher exact test and t test were used to compare score proportions and means; linear regression was used to evaluate association between PSI-SF and PEPPI with confounder adjustments. RESULTS: Forty-nine parents were recruited; the majority identified as non-White and female. An inverse relationship was noted between the total stress score and parental self-efficacy, which only attained statistical significance in the post-COVID-19 cohort (P = .02, multivariate P = .044). A significant increase in the mean was observed for subscale scores of Difficult Child (P = .019) and Parent-Child Dysfunctional Interaction after COVID-19 (P = .016). CONCLUSIONS: Elevated parental stress is associated with decreased self-efficacy during parent-physician interactions and it worsened during the pandemic. Future studies should examine the effect of different communication styles on parental stress and self-efficacy during hospitalization.

Genomics and Newborn Screening: Perspectives of Public Health Programs.

This study assesses the benefits and challenges of using genomics in Newborn Screening Programs (NBS) from the perspectives of State program officials. This project aims to help programs develop policies that will aid in the integration of genomic technology. Discussion groups were conducted with the NBS Program and Laboratory Directors in the seven HRSA Regional Genomics Collaboratives (August 2014-March 2016). The discussion groups addressed expected uses of genomics, potential benefits, and challenges of integrating genomic technology, and educational needs for parents and other NBS stakeholders: Twelve focus groups were conducted, which included participants from over 40 state programs. Benefits of incorporating genomics included improving screening modalities, supporting diagnostic procedures, and screening for a wider spectrum of disorders. Challenges included the costs of genomics, the ability to educate parents and health care providers about results, and the potential negative psychosocial impact of genomic information. Attempts to address the challenges of integrating genomics must focus on preserving the child welfare goals of NBS programs. Health departments will need to explore how genomics could be used to enhance programs while maintaining universal access to screening.

Parents' Experiences and Needs Regarding Infant Sickle Cell Trait Results.

BACKGROUND AND OBJECTIVE: Sickle cell trait (SCT) has reproductive implications and can rarely cause health problems. SCT counseling improves parent knowledge but is infrequently received by children with SCT compared with children with cystic fibrosis carrier status. There are no national guidelines on SCT disclosure timing, frequency, or counseling content. Parents' experiences with SCT disclosure and counseling are poorly understood but could inform the development of guidelines. We explored parents' experiences with and desires for SCT disclosure and counseling for their infants with SCT identified via newborn screening. METHODS: Parents of infants 2 to 12 months old with SCT were recruited through a state newborn screening program for semistructured interviews to explore their experiences with and desires for SCT disclosure and counseling. Inductive thematic analysis was conducted. RESULTS: Sixteen interviews were completed from January to August 2020. Most parents reported that SCT disclosure occurred soon after birth, in person, and by the child's physician. Five themes were identified: parent knowledge before child's SCT disclosure, family planning, the dynamics of SCT disclosure and counseling, emotions and actions after SCT disclosure, and parent desires for the SCT disclosure and counseling process. Two primary parent desires were revealed. Parents want more information about SCT, particularly rare symptomatology, and they want SCT counseling repeated once the child approaches adolescence. CONCLUSION: Parents report receiving their child's SCT diagnosis in the early newborn period from their child's doctor but indicate they receive incomplete information. Opportunities exist in primary care pediatrics to better align SCT disclosure timing and counseling content with parent desires.