scholarly journals Neurodevelopmental Screening in Young Children with Sickle Cell Disease

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 2050-2050
Author(s):  
Chi Aguwa ◽  
Alicia D. Cannon ◽  
James F. Casella ◽  
Bruce K. Shapiro ◽  
Eboni I. Lance

Abstract It is important to prioritize screening and surveillance for neurodevelopmental dysfunction in children with SCD because this vulnerable population is at higher risk for neurological complications including stroke, silent cerebral infarction, and neurodevelopmental disorders (NDD) such as language disorders, attention deficit hyperactivity disorder, and autism spectrum disorder (ASD). The American Society of Hematology (ASH) and American Academy of Pediatrics (AAP) have published guidelines to accomplish this, as well as to improve quality of life for people with SCD and NDDs. Despite the recognition of the increased risk and the clinical guidelines, the co-occurrence rates of SCD and NDD remain lower than expected. We hypothesize that the risk of NDDs is lower than expected in children with SCD due to low rates of neurodevelopmental screening and surveillance among primary care providers and hematologists, particularly in young children. Therefore, we examined the frequency of neurodevelopmental screening and surveillance among young children with SCD and identified clinical characteristics of young children with SCD who did not receive appropriate neurodevelopmental screening and surveillance. We conducted a retrospective chart review using the clinic rosters of two affiliated inner-city hospitals with a pediatric hematology clinic and sickle cell neurodevelopmental clinic. Children under 5 years old with SCD confirmed by their hematologists who were not adopted or in foster care were included in the study. A total of 276 patients were identified and reviewed. NDD and ASD specific screenings were documented at the time of review, although participants may have been diagnosed later in life. Analyses were completed using chi squared test, Fisher exact test, t-test in Stata IC-15. Patients were screened by a variety of providers, most commonly pediatricians and hematologists (see Figure 1). Table 1a shows the characteristics of the SCD patients assessed/not assessed for appropriate neurodevelopment (ND) by their pediatrician and/or hematologist. A total of 214 participants qualified for study inclusion and 148 participants (70%) were assessed for neurodevelopment. Ages and Stages Questionnaire- 3 (32%) and other non-standardized screening tools (85%) were the most common tool used (see Table 2a). Of the ND assessed patients (N=148), 37 (25%) were diagnosed with NDDs (see Table 3a). Among the not assessed ND patients (N=66), 16 (24%) were diagnosed with NDDs. Table 1b shows the characteristics of the SCD patients assessed/not assessed specifically for ASD by their pediatrician and/or hematologist. A total of 207 participants qualified for study inclusion and 39 participants (19%) were assessed for ASD. Modified Checklist for Autism in Toddlers (92%) was the most utilized screening tool (see Table 2b). None of these patients had ASD. Of the ASD assessed patients (N=39), 9 (23%) were diagnosed with NDDs (see Table 3a). Among the not assessed ASD patients (N=168), 41 (24%) were diagnosed with NDDs. Children with SCD are being screened by their healthcare providers at a much lower rate than the general pediatric population. More specifically, many children with SCD were being screened for NDD, but not ASD. Among screened children, a majority were screened with non-standardized (or poorly documented) tools or outside the age guidelines recommended by ASH and AAP (see Figure 2). Children among ND and ASD assessment groups exhibited similar percentages of NDD diagnosis, which may highlight disparities in screening and early detection of these disorders; NDDs may have also been diagnosed later in life these patients. Guidelines regarding developmental screening in pediatric SCD were released in mid-2020; given the short timeline, we did not expect to see changes in practice from this chart review. However, the AAP has guidelines for developmental surveillance and screening since 2004. Due to study design, limitations include lack of access to some data at the time of review, as patient medical records were switched to another electronic system. Additionally, standardized tools may have been used but not documented in patient charts. In conclusion, it is crucial to know the utility of these assessments in this vulnerable population. A future study could examine how the rates of screening and surveillance have changed since the guidelines release, using these data for comparison purposes. Figure 1 Figure 1. Disclosures Casella: Mast Pharmaceuticals (previously Adventrx Pharmaceuticals): Consultancy, Honoraria, Patents & Royalties. Lance: Novartis: Other: participated in research advisory board in 2020.

Autism ◽  
2020 ◽  
pp. 136236132096897
Author(s):  
Katharine E Zuckerman ◽  
Sarabeth Broder-Fingert ◽  
R Christopher Sheldrick

The American Academy of Pediatrics recommends autism spectrum disorder screening at the 18- and 24-month well-child visits. However, despite widespread toddler screening, many children are not diagnosed until school age, and delayed diagnosis is more common among low-income and minority children. Offering autism spectrum disorder screening at preschool well-child checks might reduce disparities and lower the overall age of diagnosis and service initiation. However, screening tools that span the preschool ages and are tailored for primary care are needed. Lay abstract Pediatric primary care providers check for autism signs, usually using a standard checklist, at 18- and 24-month well-child visits. When the checklist shows possible autism, children should be referred for additional treatment and evaluation with an autism specialist. However, many children with autism spectrum disorder are not detected as toddlers. Low-income and minority children are particularly likely to have a late autism spectrum disorder diagnosis. Checking for autism at preschool-aged well-child visits might be one way to identify autism spectrum disorder earlier, especially for low-income and minority children.


Author(s):  
Lynne C. Huffman ◽  
Joan Baran

Behavioral issues in children can emerge as early as infancy and be clearly apparent by toddlerhood and preschool age. Though pediatricians see infants and young children for up to a dozen well-child visits during the first two years of life, such problems are often not appreciated or identified, and consensus is lacking on a reliable and valid way to determine quickly whether a concern is significant enough to warrant a referral for further assessment/intervention. Given the pediatrics developmental surveillance and anticipatory guidance models, these visits provide an important opportunity for both prevention and early intervention efforts in the behavioral health domains. A few screening tools that reliably identify behavioral health problems in young children can help pediatricians begin the conversation, substantiate parental concerns, validate clinical impressions, inform immediate care, facilitate appropriate referrals, and, ultimately, potentially change the trajectory of a child’s life. Follow-up after screening is essential to increase likelihood of linkage to care. This chapter describes the primary health care context and examines the role of primary care pediatricians in caring for young children with behavioral health problems. Next, it gives a brief overview of the problems typically seen in this age range. Then, screening tools available to primary care pediatricians are reviewed, noting the reliability and validity data for each tool. Summary recommendations for useful screening strategies are given and the limits of what is available to primary care providers are addressed.


2020 ◽  
Vol 35 (7) ◽  
pp. 485-491
Author(s):  
Celia Greenlaw ◽  
Sarah Nuss ◽  
Cristina Camayd-Muñoz ◽  
Rinat Jonas ◽  
Julie Vanier Rollins ◽  
...  

Background: This study evaluated the effectiveness of a parent-completed questionnaire for detecting seizures in high-risk children. Methods: A 2-part seizure screen for children up to 12 years of age with suspected autism spectrum disorder, developmental delay, or seizure, was implemented in 12 Massachusetts clinics serving populations with high health disparities. Primary care providers and developmental behavioral pediatricians administered part 1, a brief highly sensitive screen. If the result was positive, a research assistant administered part 2, a more detailed screen with higher specificity. Positive part 2 results prompted a specialized assessment by a pediatric neurologist. Screening data were evaluated for detection of seizures or other diagnoses, reason for conducting the screen, and appointment outcomes. Data analysis included chi-squared tests, percentages for categorical variables, and means for numerical data. Results: Of 207 administered seizure questionnaires, 78% of children screened positive on part 1. Of those, 94% of families completed part 2 by telephone, and 64 individuals screened positive. The screen helped to detect 15 new seizure diagnoses and 35 other neurologic diagnoses. Average time to first scheduled appointment was 23.8 days. The no-show rate was 7%. Conclusions: The seizure questionnaire effectively identified seizures and other disorders in a diverse population of high-risk children. Broader use of this low-cost screening tool could improve access to care for children with suspected seizures, increase seizure recognition, and help allocate resources more effectively.


2019 ◽  
Vol 6 (Supplement_2) ◽  
pp. S171-S171
Author(s):  
Anne Abbate ◽  
Lisa Chirch ◽  
Michael Christopher. Thompson ◽  
Dorothy Wakefield ◽  
Faryal Mirza ◽  
...  

Abstract Background Recommendations on screening HIV-infected (+) patients for bone disease exist. We sought to characterize awareness of and adherence to HIV-specific recommendations and assess risk factors for fracture in this population. Methods Primary care provider (PCP) and ID specialist awareness of screening recommendations was assessed using an anonymous electronic survey. We conducted interviews of 45 HIV+ patients and chart review. We calculated risk using the fracture risk assessment tool (FRAX). Email notifications were sent if an indication dual-energy x-ray absorptiometry (DXA) scans was identified. Chart review was repeated 12 months later to assess response. Statistical methods included chi-square and Fisher’s exact test for categorical data, and t-tests or Wilcoxon rank-sum tests for continuous data. A multivariate logistic regression examined the relationship between adult fragility fractures and covariates. Results No immunologic or virologic factors or exposure to specific antiretroviral therapies (ART) were associated with FFX (Table 1). FRAX score (hip, major osteoporotic fracture) successfully predicted FFX history (P = 0.002, P = 0.001, respectively). Overall, 35 (78%) patients qualified for DXA; 23 (66%) were men, only 8 (23%) had a previous DXA. Following provider notification, an additional 5 patients had DXA ordered. DXA was recommended for all patients with FFX, compared with 68% without a fracture (P = 0.02). In logistic regression modeling, increasing age, male sex, and months of ART therapy were associated with FFX (Table 2). Twenty-seven providers responded to the pre-intervention survey, of whom only 35% were aware of screening recommendations for HIV+ patients. Of the 18 providers who responded post-intervention, 63% were aware of these recommendations (Table 3). Conclusion A brief educational intervention resulted in increased awareness of HIV-specific screening recommendations, but this translated into adherence to a lesser extent. HIV+ men were more likely to have a history of fragility fracture compared with females. No specific ART or immunologic marker predicted fracture risk or history. Fostering a greater understanding of unique characteristics and risks in this population is crucial to ensure appropriate preventive care. Disclosures All authors: No reported disclosures.


2015 ◽  
Vol 108 (9) ◽  
pp. 531-536 ◽  
Author(s):  
Lauren N. Whiteman ◽  
Carlton Haywood ◽  
Sophie Lanzkron ◽  
John J. Strouse ◽  
Leonard Feldman ◽  
...  

2021 ◽  
Vol 63 (1) ◽  
Author(s):  
Ramprakash Kaswa

Substance abuse is common amongst patients attending primary healthcare settings. Despite the substantial impact on one’s health, substance abuse is often underdiagnosed by primary care providers owing to a lack of training and time for screening. Self-reported screening tools are easy to administer and efficient to make a substance abuse diagnosis in primary care settings. Comorbid mental illness and intimate partner violence are common amongst patients presenting with substance abuse in primary care. An early diagnosis and a brief behavioural change counselling are effective in managing substance abuse before it develops into dependency. A brief motivational communication rather than a confrontation during substance abuse screening, counselling and treatment is important to achieve optimum patient outcomes.


Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 5923-5923
Author(s):  
Lisa Marie Shook ◽  
Christina Bennett Farrell ◽  
Karen A. Kalinyak ◽  
Stephen C Nelson ◽  
Brandon M. Hardesty ◽  
...  

Abstract Sickle Treatment and Outcomes Research in the Midwest (STORM) is a regional sickle cell network, funded by the Health Resources and Services Administration Treatment Demonstration Project (HRSA U1EMC27863), established to improve outcomes for individuals with sickle cell disease (SCD) living in Indiana, Illinois, Michigan, Minnesota, Ohio and Wisconsin. The STORM network is led by pediatric and adult hematologists who coordinate network activities in each state, along with a Regional Coordinating Center that organizes efforts throughout the Midwest. The goal of the STORM network is to increase the number of pediatric and adult primary care providers (PCP) who are knowledgeable about the management and treatment of SCD, and who are willing to prescribe and manage hydroxyurea therapy as a means to improve medical care for the approximately 15,000 individuals living with SCD in the Midwest. One PCP engagement strategy that has been implemented to increase provider knowledge in the region is replication of the Project ECHOTM (Extension for Community Healthcare Outcomes) telementoring model. Project ECHO was developed by the University of New Mexico to utilize low-cost, high-impact video technology to link expert inter-disciplinary specialist teams with primary care providers to improve management of chronic diseases. This guided practice telementoring model delivers complex specialty medical care to underserved areas, reduces health disparities, and increases workforce capacity. Project ECHO's methodology is based on 1) using telehealth technology to build healthcare resources where they are scarce; 2) sharing best practices to reduce variation in clinical care; 3) utilizing practice-based learning to develop specialty expertise among providers; and 4) monitoring and evaluating provider outcomes. Project ECHO has demonstrated improved healthcare outcomes in Hepatitis C and several other chronic diseases, and is now being piloted by STORM to test its feasibility and applicability for SCD by using a regional approach with CME accreditation. STORM network site physician leads in each state are recruiting multi-disciplinary primary care teams to participate as "spokes" in monthly SCD TeleECHO clinics. The "hub" led by the STORM Regional Coordinating Center, located at Cincinnati Children's Hospital Medical Center, coordinates implementation and evaluation of the telementoring clinics, delivered through monthly teaching sessions. STORM TeleECHO participants log onto an internet-based virtual meeting site, using a webcam to interact during the session. STORM TeleECHO clinics include brief didactic presentations from nationally-recognized SCD content experts with topics and curriculum based on the National Heart Lung and Blood Institute Evidence-Based Management of Sickle Cell Disease guidelines released in 2014. TeleECHO teaching clinics also include 1-2 de-identified, HIPAA protected case discussions (pediatric and adult) presented by providers who would like medical and psychosocial feedback on management of challenging clinical scenarios. Providers participating in the STORM TeleECHO complete an initial survey assessing knowledge and comfort levels, practice behaviors (including hydroxyurea prescribing practices) and clinic demographics. Satisfaction surveys are sent to participants after each session as part of the CME-credit evaluation. Follow-up surveys at 6 months and 1 year will assess satisfaction, knowledge, comfort level and changes in practice. STORM's TeleECHO was launched in March 2016. Preliminary data indicate an interest in STORM TeleECHO teaching sessions by both pediatric and adult providers across the Midwest region. Future efforts will expand the network to more PCPs in the region, while improving the applicability and utility of STORM TeleECHO in SCD through provider assessment. Disclosures Ware: Global Blood Therapeutics: Consultancy; Biomedomics: Research Funding; Bristol Myers Squibb: Research Funding; Addmedica: Research Funding; Nova Laboratories: Consultancy; Bayer Pharmaceuticals: Consultancy.


10.2196/30479 ◽  
2021 ◽  
Vol 8 (11) ◽  
pp. e30479
Author(s):  
Rhiannon Martel ◽  
Matthew Shepherd ◽  
Felicity Goodyear-Smith

Background Adolescents often present at primary care clinics with nonspecific physical symptoms when, in fact, they have at least 1 mental health or risk behavior (psychosocial) issue with which they would like help but do not disclose to their care provider. Despite global recommendations, over 50% of youths are not screened for mental health and risk behavior issues in primary care. Objective This review aimed to examine the implementation, acceptability, feasibility, benefits, and barriers of e-screening tools for mental health and risk behaviors among youth in primary care settings. Methods Electronic databases—MEDLINE, CINAHL, Scopus, and the Cochrane Database of Systematic Reviews—were searched for studies on the routine screening of youth in primary care settings. Screening tools needed to be electronic and screen for at least 1 mental health or risk behavior issue. A total of 11 studies that were reported in 12 articles, of which all were from high-income countries, were reviewed. Results e-Screening was largely proven to be feasible and acceptable to youth and their primary care providers. Preconsultation e-screening facilitated discussions about sensitive issues and increased disclosure by youth. However, barriers such as the lack of time, training, and discomfort in raising sensitive issues with youth continued to be reported. Conclusions To implement e-screening, clinicians need to change their behaviors, and e-screening processes must become normalized into their workflows. Co-designing and tailoring screening implementation frameworks to meet the needs of specific contexts may be required to ensure that clinicians overcome initial resistances and perceived barriers and adopt the required processes in their work.


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