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Pediatric developmental screenings: A primary care approach Abstract: Early recognition o f developmental delay is critical to providing comprehensive pediatric prim ary care. Advanced practice nurses must be aware of the guidelines for surveillance and developmental screening in children. This article discusses guidelines for screening, examples of screening tools, information for follow up, and referral for positive screenings. By Amy A. W illiams, DNP, APRN, CPNP-PC; Carrie L. Cormack, DNP, APRN, CPNP-PC; Katherine Chike-Harris, DNP, APRN, CPNP-PC; Catherine 0, Durham, DNP, FNP-C; Terri 0. Fowler, DNP, FNP-C; Elizabeth A. Jensen, DNP, FNP-C
rimary care advanced practice registered nurses (APRNs) are in a key position to provide highquality care for young patients. Approximately 95% of children from birth to 3 years of age are seen in the primary care setting for routine healthcare needs.' Part of routine primary care for pediatric patients includes developmental assessment and screening for developmental delays; however, only approximately 30% of children with developmental
delays are diagnosed before entering school, and only 10% receive in terv en tio n s.2 W ith one in six U.S. children diagnosed with a developmental disability and 12% to 16% of all U.S. children with at least one developmental delay, primary care is the best setting to screen and identify chil dren with developmental delays.1,3 The purpose of this review article is to outline the surveil lance and screening recommendations, process, follow up,
Keywords: developmental delays, developmental screening, pediatrics, primary care, screening tools, surveillance
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Pediatric developmental screenings: A primary care approach
and implications for practice. In addition, com m only used screening tools with high sensitivity and specificity appropri ate for the prim ary care setting are reviewed, including the Ages and Stages Questionnaire, third edition (ASQ-3), the P arents’ Evaluation o f D evelopm ental Status (PEDS) for general developmental screening, the Modified Checklist for Autism in Toddlers-Revised (M-CHAT-R), and M-CHAT-R/F specific for Autism Spectrum Disorders.3'4 ■
D e v e lo p m e n ta l s u r v e illa n c e in p rim a ry c a re
To enhance surveillance and early identification of develop mental disabilities, the American Academy of Pediatrics (AAP) developed a policy statement in 2006 recommending surveil lance for developmental disabilities at all well-child visits as well as validated, structured, standardized screening at the 9-, 18-, 24-, or 30-m onth visits regardless of risk factors.2'3,5,6The rationale for the screening tool structure includes the follow ing considerations. At 9 months, m otor and early com m uni cation skills are more established, and eye contact/hearing can be observed. Early symptoms o f autism such as lack of eye contact, poor response to name being called, and not pointing to objects can be present at this early stage and within the first year of life. At 18 months, communication and language delays become more evident. Motor skills should be better established than at the 9-m onth visit, and children should be ambulatory. At 30 m o n th s o f age, m ost m otor, com m unication, and cognitive delays are identified.7 Developmental surveillance differs from developmental screening in that surveillance refers to the process of recog nizing children at risk for developmental delays.2Surveillance should be conducted at every well-child visit and is accom plished through an accurate and thorough medical history, physical exam, caregiver reports, and observations w ithout the use of a screening tool.2 Screening is defined as the stan dardized use o f reliable, highly-sensitive and specific tools designed for at-risk populations; they are focused on devel opmental domains and are age appropriate.2Broad screening tools for developmental delays should address fine and gross m otor skills, problem solving, adaptive behavior, and even personal social skills.8 Given that a child’s developm ent is ever changing, it is im perative that providers offer regular and repeated surveillance and screening to detect develop m ental delays prior to entry into school.3,8 Developmental delays vary in severity and include condi tions such as language im pairm ent and learning disorders, intellectual disorders, and m ore severe concerns, such as cerebral palsy, seizures, hearing loss, blindness, autism spec trum disorders, and global developmental delays.9 Delays can be subtle from the prim ary care perspective. Being prepared to identify subtle disabilities, such as language im pairm ent, learning disabilities, mild intellectual disabilities, and hearing www.tnpj.com
loss can lead to early detection, intervention, and improved long-term outcomes (higher academic achievement, improved IQ, increased adult em ploym ent, and decreased crim inal activity).3 ■
S c re e n in g o f d e v e lo p m e n t in p rim a ry c a re s e ttin g s
In accordance w ith AAP recom m endations, surveillance should be perform ed at every visit along w ith a structured screening tool, specifically at 9-, 18-, 24-, o r 3 0 -m o n th visits for the following ratio n ale.3,8 The surveillance and screening process begins when pediatric healthcare provid ers elicit im p o rta n t h isto ric al in fo rm a tio n , in c lu d in g concerns ab o u t developm ent from patien ts’ parents and caregivers.8 O ftentim es, parents and caregivers are first to recognize a potential d iso rd er in a ch ild ’s developm ent; however, the absence o f parental concern does n ot rule out a developmental disorder, and thus, the need for a thorough evaluation. D evelopm ental histories are essential in docum enting ongoing changes in patient developm ent and include agespecific milestones, such as sitting up, walking, and language developm ent. In addition, the pediatric provider m ust be astute in observing developm ent w ith in the context o f a b rief preventive care visit, particularly the interaction b e tween the patient and parent or caregivers. Identification o f possible genetic, environm ental, biological, an d social risk factors are key as well as identification o f protective factors, such as fam ily su p p o rt, hom e environm ent, and o p p o rtu n ity for peer interaction.8 The results of develop m ental surveillance and screenings should be well d o cu m ented w ithin a p atien t’s chart in addition to any action taken based upon the results o f the surveillance/screening, in clu d in g earlier follow up an d referral to co m m u n ity based services or specialists. ■
S c re e n in g to o ls
The implementation o f the actual screening tool is dependent on the following: type o f tool, individual practice, availabil ity o f paper or electronic tools, tim e constraints, competing dem ands, and staffing requirem ents.3 It is imperative for the nurse practitioner (NP) to identify and navigate the barriers to ensure provision of evidence-based evaluations o f pedi atric patients on an ongoing basis. M any surveillance and screening tools exist for providers to choose from. Evaluating the sensitivity and specificity along with ease of application is necessary. ■
PED S S c re e n in g Tool
The PEDS screening tool is written at the fourth to fifth grade reading level, includes eight yes/no questions, two openended questions, and targets parental concerns. This screening The Nurse Practitioner
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SELE C TE D C A P S T O N E P R O JE C T
tool can be com pleted at hom e or in the office setting (see Developmental screening tools for prim ary care). The PEDS screening tool is appropriate for ages up to 9 years and is 75% sensitive and 74% specific, m eaning that the tool cor rectly identifies 75% of the children with true delays and that 74% o f children w ithout delays are correctly classified.3This tool was validated against many other gold-standard tools, such as the Woodcock-Johnson Psycho-Educational BatteryRevised and W oodcock-Johnson III Tests o f Achievement. Patients are placed in categories of low, medium, or high risk w ith those being m edium -to-high risk requiring further testing and referral.3 ■ ASQ Screening Tool
The ASQ-3 is comprised of 21 age-based questionnaires, each of which consists of 30 items to assess a child’s development w ithin five core areas: com m unication, gross m otor, fine m otor, problem solving, and personal-social.10,11 The agebased questionnaires represent development assessment for ages 1 m onth through 5.5 years at the intervals of 2, 4, 6, 8, 9, 10, 12, 14, 16, 18, 20, 22, 24, 27, 30, 33, 36, 42, 48, 54, and 60 m o n th s. Each q u estio n n aire is w ritten at th e fo u rth through sixth grade education level and includes pictures and examples to increase simplicity. Unlike other develop m ental surveillance tools, ASQ-3 encourages parents to not only answer questions but to actually participate in the ac tivities assessed in the ASQ w ith their child. ASQ-3 may be completed in person (home or office) or online and takes approximately 10 to 20 minutes. Each of the 30 questions is answered either “yes,” “sometimes,” or “not yet” and is scored with a maximum of 60 points per domain. The instrum ent includes an overall score as well. Grading takes less
than 2 minutes, and the results are plotted onto a grid and fall into one of three areas: The white area represents a child’s developm ent is w ithin norm al limits; the gray area is the m onitoring zone and indicates the child may be at risk for developmental delays; and the black area designates further assessment is needed.10 The ASQ-3 is not m eant to diagnose developmental delays but rather to recognize any abnormalities. The overall standardization of ASQ-3 was based on the testing of 15,138 children o f various races, ethnicities, and social-economic status.12 The sensitivity and specificity of the ASQ-3 is 86% and 85%, respectively.10 Studies o f the validity o f ASQ-3 in p reterm infants by H albw achs and colleagues and Schonhaut and colleagues have indicated that ASQ-3 may be m ore sensitive for those children who have severe developmental delays than those who have mild-tom oderate delays.11,13 Even though the sensitivity and specific ity of ASQ-3 may be variable for preterm infants, it continues to be a flexible, easy to use, and valid surveillance tool for the general population in recognizing developmental delays in children from 1 m onth to 5.5 years of age.10 Moreover, the questionnaires are easy to complete, and parents tend to like the interactivity o f the questions because it teaches them about their child’s development, which makes them feel more involved with the developmental milestones.12 ■
M-CHAT-R and M-CHAT-R/F
The CDC has estimated that 1 in 68 children was diagnosed w ith Autism Spectrum Disorders (ASDs) in 2010 according to data obtained through their Autism and Developmental Disabilities M onitoring network, which is a 23% rise from 2009 and a 78% increase from 2007.9 Prim ary care providers are th e fro n tlin e in th e rec o g n itio n an d assessm ent o f
Developm ental screening tools for primary care 8 ,10 ,15 , 17,2 0,2 2 Screening tool
Ages used
PEDS
Birth-9 years
ASQ-3
Every 2 m onths fo r the first 8 months. M onthly at 9 and 10 m onths
Recommended ages for universal screening
Sensitivity
Specificity
9 m onths 18 m onths Either 24 or 30 m onths
75%
74%
9 m onths 18 m onths Either 24 or 30 m onths
86%
85%
Every 2 m onths from 12 to 24 m onths Every 3 m onths from 27 to 36 m onths At 42 m onths Every 6 m onths from 48 m onths to 60 m onths of age
36 The Nurse Practitioner • Vol. 40, No. 4
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Pediatric developmental screenings: A primary care approach
Autism spectrum disorder screening tools for primary care 8 10 15 17-2022 Tool
Ages used
M-CHAT-R
16-30 m onths
M-CHAT-R/F
16-30 m onths
Recommended ages for universal screening
Low risk
Medium risk
High risk
18 and 24 m onths as part of w ell-child care
Total score 0-2, if child is younger than 2 years, rescreen at 2 years
Total score 3-7
Total score 8-20
Im m ediately after M-CHAT-R to fo llo w up fo r m edium -risk and high-risk M-CHAT-R screenings
Not Needed
Adm inister, if score is 0-1, this is negative. Rescreen at future visits
Bypass M-CHAT-R/F and refer im m edi ately for diagnostic evaluation and early intervention
If score remains 2 or higher, refer for diagnostic evaluation and early intervention
developmental abnormalities— particularly ASDs— because they are usually the first point-of-contact for m ost families.14 The AAP recom m ends that all children be screened for au tism during their 18- and/or 24-m onth well visits.8 The m ost popular tool to assess the risk o f ASDs is the M-CHAT, which was developed by two neuropsychologists, Diana Robins and Deborah Fein, and a clinical psychologist, Marianne Barton in 1999. This free screening tool was developed to identify ASDs (directly) and general developmental delays (indirectly) in toddlers between the ages of 16 and 30 months within the primary care setting and is available in 14 languages.15 It is comprised o f 23 “yes-or-no” questions written at the sixth grade reading level and is completed by the parent or caregiver in the office within approximately 5 to 10 minutes. The ques tionnaire can be scored in less than 2 minutes, and, if needed, a follow-up interview can be initiated if greater than three gen eral items or two critical items are elicited on the assessment. If the items remain unchanged, then the primary care provider should refer the child for further evaluation by a team special izing in ASD diagnosis and treatment. Though it has been useful in recognizing and helping to diagnose ASDs for the past decade, the M-CHAT yields high false positives, meaning that a large num ber of children who scored poorly on the questionnaire were not diagnosed with autism.16Because of this lack of sensitivity, a revised M-CHATR with follow up (M-CHAT-R/F) was developed and intro duced in December 2013 by Robins, Fein, and Barton.17 The M-CHAT-R is a free two-step screening tool that is similar but m ore sensitive than the original M-CHAT, detecting m ore cases o f autism overall (67 per 10,000 versus 45 per 10,000).18 www.tnpj.com
The modifications to the questionnaire include the n u m ber of “yes-or-no” questions reduced from 23 to 20, items reorganized so that the 7 questions that best indicate autism are placed in the first 10 questions listed, the language simpli fied, and examples added to clarify the questions.19 The sec ond step to the M-CHAT-R is grading the questionnaire and determ ining if the child is at a low, m edium , or high risk for autism. If the risk is low, then the M-CHAT-R is repeated at the 24-m onth-old well visit. If the risk is m edium , then the exam iner will adm inister a follow -up questionnaire, the M-CHAT-R/F, and, if the patient remains at m edium or high risk, th en the child is referred for further evaluation (see
Autism spectrum disorder screening tools for primary care). Robins and colleagues found th at 47.5% o f children who scored in the m edium - to high-risk areas were at risk for ASDs with a confidence interval of 95% and, of those, 94.6% (95% confidence interval) were at risk for developm ental delays in general, thus illustrating that the M-CHAT-R/F is an easy, efficient, and reliable tool to assess risk o f ASDs.20 ■ When to refer Once developmental screening has been completed, appro priate referrals are necessary if concerns have been identified or risk factors are in place. Being knowledgeable about the tim ing and choosing of an appropriate provider when m ak ing a referral are two im portant considerations for the NP during the screening and interpretation process. A child who is identified to be at risk for developmental delay or has failed a developm ental screen should be im mediately referred for further evaluation.8 This includes a The Nurse Practitioner • April 2015 37
S ELE C TE D C A P S T O N E P R O JE C T
com prehensive m edical and developm ental evaluation as well as a referral to early intervention or early childhood services. This is especially helpful for children who are at increased risk for developm ental delays or later academic underachievem ent, based on risk factors such as socioeco nom ic or medical diagnoses.8 With many pediatric subspecialists available to choose from, the task of choosing the appropriate provider can be daunting. Neurodevelopmental pediatricians, developmental and behav ioral pediatricians, pediatric neurologists, psychiatrists, and APRNs working in these areas can perform diagnostic evalua tions for developmental concerns. If ASD is suspected, the child should be referred to a specialist who has experience and ex pertise in working with this population. This would likely be one of the above listed providers. Other pediatric professionals, including geneticists, occupational therapists, physical thera pists, speech and language therapists, audiologists, early childhood educators, and special education teachers may be an integral part of the interprofessional team depending on the chief complaint and developmental concern. The prim ary care provider in the pediatric medical home is an essential link between parents, com m unity service pro viders, and pediatric subspecialists. Prim ary care providers coordinate care that ensures children who are identified as at risk fo r d e v e lo p m e n ta l delay o r c h ild re n w ho fail a developmental screening tool undergo a thorough medical evaluation to rule out any underlying medical reason for the developmental delay. W ith an increase in the percentage of u n d erly in g etiologies being identified in children w ith developmental delay, a comprehensive medical evaluation with pediatric specialists is recommended for all children at risk. This evaluation may include, but is not limited to, brain im aging, X-rays, genetic testing, and m etabolic testing.8 Although determining an underlying etiology may not change the course of treatm ent or therapies that will be initiated, there are some benefits to determining if there is an underly ing medical condition contributing to the developm ental delay. Baily and associates concluded that determ ining an etiology for a delay can assist with various com ponents of treatm ent and may affect future decision making, such as family planning or medical research eligibility.21 ■
Im p lic a tio n s fo r p r a c tic e
Factors to consider when implementing screening tools into a prim ary care setting include time needed to complete, score, and incorporate screening results into the treatm ent plan as well as staffing patterns, clinic setting, and clinic flow when deciding which implementation strategy is most appropriate for a given clinic. Barriers to screening can be overcome by the initiation o f a consistent, evidence-based screening and referral system that is culturally sensitive and family centered.22 38
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Once a child is determ ined to be at risk, it is im portant for healthcare providers to be knowledgeable about referral resources available near their location. For an underserved population or rural populations, this may be a challenge with one possible solution being telehealth for rural communities. Collaborative partnerships between rural health clinics and m ajor urban medical centers or university hospitals could be helpful in the prom otion o f referral and continuation of care. A mixed m ethods study in a mid-Atlantic urban setting revealed that only 51% of those referred for early interven tion services completed the referral, suggesting that barriers to follow through exist.2 Referral tracking mechanisms, au thorization to release m edical records for the purpose of sharing inform ation between the referring and specialty clinics, an d case-m anagem ent services are ap p ro p riate interventions for these populations. ■
A h o lis tic p e rs p e c tiv e
APRNs are well versed in approaching patient care from a holistic perspective and understand the benefit of ongoing surveillance an d screening. U tilizing a system atic and evidence-based approach for surveillance and screening of pediatric patients has been shown to lead to early interven tio n , im proved fu n ctio n in g , an d a lesser b u rd en on the patient and family. The screening tools discussed provide one such option to ensure an evidence-based approach to patient care and a strong foundation w ith im proved o u t comes for practice. © R EFERENCES 1. Malik F, Booker JM, Brown S, McClain C, McGrath J. Improving developmental screening among pediatricians in new mexico: findings from the developmental screening initiative. Clin Pediatr (Phila). 2014;53(6):531-538. 2. Morelli DL, Pati S, Butler A, et al. Challenges to implementation of developmental screening in urban primary care: a mixed methods study. BMC Pediatr. 2014; 14:16. 3. Mackrides PS, Ryherd SJ. Screening for developmental delay. Am Fam Physician. 2011;84(5):544-549. 4. Earls M, Curry E. The AAP autism screening guidelines. Integrating screening guidelines into primary care practice. 2011. http://www.aap.org/en-us/ professional-resources/practice-support/quality-improvement/QualityImprovement-Innovation-Networks/Documents/Autism_PreSIP.pdf. 5. San Antonio MC, Fenick AM, Shabanova V, Leventhal JM, Weitzman CC. Developmental screening using the ages and stages questionnaire. Infants & Young Children. 2014;27(2):111-119. 6. Valleley RJ, Evans JH, O’Dell S, Allen KD. Developmental screening in rural primary care: real-world application. Clin Pediatr (Phila). 2013;53(9):900-905. 7. Hagan JF, Shaw JS, Duncan PM. Bright Futures: Guidelines for Health Supervision o f Infants, Children and Adolescents. 3rd ed. Elk Grove Village, IL: American Academy of Pediatrics. 8. Council on Children With Disabilities, Section on Developmental Behavioral Pediatrics, Bright Futures Steering Committee, Medical Home Initiatives for Children With Special Needs Project Advisory Committee. Identifying infants and young children with developmental disorders in the medical home: an algorithm for developmental surveillance and screening. Pediatrics. 2006; 118(1 ):405-420. 9. Developmental Disabilities Monitoring Network Surveillance Year 2010 Principal Investigators, Centers for Disease Control and Prevention (CDC).
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Pediatric developmental screenings: A prim ary care approach
Prevalence of autism spectrum disorder among children aged 8 years— autism and developmental disabilities monitoring network, 11 sites, United States, 2010. M M W R Surveill Summ. 2014;63(2): 1-21.
20. Robins DL, Casagrande K, Barton M, Chen CM, Dumont-Mathieu T, Fein D. Validation of the modified checklist for autism in toddlers, revised with follow-up (M-CHAT-R/F). Pediatrics. 2014; 133( 1):37-45.
10. Squires J, Bricker D, Potter L. Ages & Stages Questionnaires, Third Edition (ASQ-3) User’s Guide. 3rd ed. Baltimore, MD: Paul H. Brookes Publishing; 2009.
21. Bailey DB Jr, Skinner D, Sparkman KL. Discovering fragile X syndrome: family experiences and perceptions. Pediatrics. 2003:111(2):407-416.
11. Halbwachs M, Muller JB, Nguyen The Tich S, et al. Usefulness o f parentcompleted ASQ for neurodevelopmental screening of preterm children at five years o f age. PLoS One. 2013;8(8):e71925.
22. Frankenburg WK. Developmental surveillance and screening o f infants and young children. Pediatrics. 2002;109(1):144-145.
12. Bedford S, Walton S, Ahn J. Measures o f child development: a review. Policy Research Unit in the Health o f Children, Young People and Families, https:// www.ucl.ac.uk/cpru/documents/review_of_measures_of_child_development. 13. Schonhaut L, Armijo I, Schonstedt M, Alvarez J, Cordero M. Validity of the ages and stages questionnaires in term and preterm infants. Pediatrics. 2013; 131 (5):el468-el474.
Amy A. Williams is an Instructor and Pediatric Nurse Practitioner, Medical University of South Carolina, College o f Nursing and Department of Pediatrics, Charleston, S.C.
14. Johnson CP, Myers SM, American Academy o f Pediatrics Council on Children With Disabilities. Identification and evaluation of children with autism spectrum disorders. Pediatrics. 2007;120(5):1183-1215. 15. First Signs. Recommended screening tools, http://firstsigns.org/screening/ tools/rec.htm#asd_screens. 16. Earls MF. Behavioral and developmental screening advice from ABCD states’ experience. PediatrAnn. 2013;42(7):266. doi:10.3928/00904481-20130619-03 17. Autism Speaks. Modified checklist for autism in toddlers, revised (M-CHAT-R). http://www.autismspeaks.org/what-autism/diagnosis/ screen-your-child. 18. US Department o f Health 8c Human Services. Revised autism screening tool offers more precise assessment, http://www.nih.gov/news/health/dec2013/ nichd-23.htm. 19. Oswald D. A revised M-CHAT. http://www.autismva.org/sites/default/files/ M-CHAT%20RF.pdf.
Carrie L. Cormack is an instructor at Medical University of South Carolina, College of Nursing, Charleston, SC. Katherine Chike-Harris is a pediatric nurse practitioner at Fetter Health Care Network, LLC, Charleston, SC. Catherine O. Durham is an instructor and pediatric nurse practitioner at Medical University of South Carolina, College of Nursing and Department of Pediatrics, Charleston, SC. Terri O. Fowler is an instructor and family nurse practitioner at Medical University of South Carolina, College of Nursing and Division of General Internal Medicine Hospitalist Program, Charleston, SC. Elizabeth A. Jensen is an instructor and family nurse practitioner at Medical University of South Carolina, College of Nursing and Department o f Pediatrics, Charleston, SC. The authors have disclosed that they have no financial relationships related to this article. D O I-10.1097/01 .NPR.0000461949.15668.ee
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Pediatric developmental screenings: A primary care approach Abstract: Early recognition o f developmental delay is critical to providing comprehensive pediatric prim ary care. Advanced practice nurses must be aware of the guidelines for surveillance and developmental screening in children. This article discusses guidelines for screening, examples of screening tools, information for follow up, and referral for positive screenings. By Amy A. W illiams, DNP, APRN, CPNP-PC; Carrie L. Cormack, DNP, APRN, CPNP-PC; Katherine Chike-Harris, DNP, APRN, CPNP-PC; Catherine 0, Durham, DNP, FNP-C; Terri 0. Fowler, DNP, FNP-C; Elizabeth A. Jensen, DNP, FNP-C
rimary care advanced practice registered nurses (APRNs) are in a key position to provide highquality care for young patients. Approximately 95% of children from birth to 3 years of age are seen in the primary care setting for routine healthcare needs.' Part of routine primary care for pediatric patients includes developmental assessment and screening for developmental delays; however, only approximately 30% of children with developmental
delays are diagnosed before entering school, and only 10% receive in terv en tio n s.2 W ith one in six U.S. children diagnosed with a developmental disability and 12% to 16% of all U.S. children with at least one developmental delay, primary care is the best setting to screen and identify chil dren with developmental delays.1,3 The purpose of this review article is to outline the surveil lance and screening recommendations, process, follow up,
Keywords: developmental delays, developmental screening, pediatrics, primary care, screening tools, surveillance
34
The Nurse Practitioner • Vol. 40, No. 4
www.tnpj.com
Pediatric developmental screenings: A primary care approach
and implications for practice. In addition, com m only used screening tools with high sensitivity and specificity appropri ate for the prim ary care setting are reviewed, including the Ages and Stages Questionnaire, third edition (ASQ-3), the P arents’ Evaluation o f D evelopm ental Status (PEDS) for general developmental screening, the Modified Checklist for Autism in Toddlers-Revised (M-CHAT-R), and M-CHAT-R/F specific for Autism Spectrum Disorders.3'4 ■
D e v e lo p m e n ta l s u r v e illa n c e in p rim a ry c a re
To enhance surveillance and early identification of develop mental disabilities, the American Academy of Pediatrics (AAP) developed a policy statement in 2006 recommending surveil lance for developmental disabilities at all well-child visits as well as validated, structured, standardized screening at the 9-, 18-, 24-, or 30-m onth visits regardless of risk factors.2'3,5,6The rationale for the screening tool structure includes the follow ing considerations. At 9 months, m otor and early com m uni cation skills are more established, and eye contact/hearing can be observed. Early symptoms o f autism such as lack of eye contact, poor response to name being called, and not pointing to objects can be present at this early stage and within the first year of life. At 18 months, communication and language delays become more evident. Motor skills should be better established than at the 9-m onth visit, and children should be ambulatory. At 30 m o n th s o f age, m ost m otor, com m unication, and cognitive delays are identified.7 Developmental surveillance differs from developmental screening in that surveillance refers to the process of recog nizing children at risk for developmental delays.2Surveillance should be conducted at every well-child visit and is accom plished through an accurate and thorough medical history, physical exam, caregiver reports, and observations w ithout the use of a screening tool.2 Screening is defined as the stan dardized use o f reliable, highly-sensitive and specific tools designed for at-risk populations; they are focused on devel opmental domains and are age appropriate.2Broad screening tools for developmental delays should address fine and gross m otor skills, problem solving, adaptive behavior, and even personal social skills.8 Given that a child’s developm ent is ever changing, it is im perative that providers offer regular and repeated surveillance and screening to detect develop m ental delays prior to entry into school.3,8 Developmental delays vary in severity and include condi tions such as language im pairm ent and learning disorders, intellectual disorders, and m ore severe concerns, such as cerebral palsy, seizures, hearing loss, blindness, autism spec trum disorders, and global developmental delays.9 Delays can be subtle from the prim ary care perspective. Being prepared to identify subtle disabilities, such as language im pairm ent, learning disabilities, mild intellectual disabilities, and hearing www.tnpj.com
loss can lead to early detection, intervention, and improved long-term outcomes (higher academic achievement, improved IQ, increased adult em ploym ent, and decreased crim inal activity).3 ■
S c re e n in g o f d e v e lo p m e n t in p rim a ry c a re s e ttin g s
In accordance w ith AAP recom m endations, surveillance should be perform ed at every visit along w ith a structured screening tool, specifically at 9-, 18-, 24-, o r 3 0 -m o n th visits for the following ratio n ale.3,8 The surveillance and screening process begins when pediatric healthcare provid ers elicit im p o rta n t h isto ric al in fo rm a tio n , in c lu d in g concerns ab o u t developm ent from patien ts’ parents and caregivers.8 O ftentim es, parents and caregivers are first to recognize a potential d iso rd er in a ch ild ’s developm ent; however, the absence o f parental concern does n ot rule out a developmental disorder, and thus, the need for a thorough evaluation. D evelopm ental histories are essential in docum enting ongoing changes in patient developm ent and include agespecific milestones, such as sitting up, walking, and language developm ent. In addition, the pediatric provider m ust be astute in observing developm ent w ith in the context o f a b rief preventive care visit, particularly the interaction b e tween the patient and parent or caregivers. Identification o f possible genetic, environm ental, biological, an d social risk factors are key as well as identification o f protective factors, such as fam ily su p p o rt, hom e environm ent, and o p p o rtu n ity for peer interaction.8 The results of develop m ental surveillance and screenings should be well d o cu m ented w ithin a p atien t’s chart in addition to any action taken based upon the results o f the surveillance/screening, in clu d in g earlier follow up an d referral to co m m u n ity based services or specialists. ■
S c re e n in g to o ls
The implementation o f the actual screening tool is dependent on the following: type o f tool, individual practice, availabil ity o f paper or electronic tools, tim e constraints, competing dem ands, and staffing requirem ents.3 It is imperative for the nurse practitioner (NP) to identify and navigate the barriers to ensure provision of evidence-based evaluations o f pedi atric patients on an ongoing basis. M any surveillance and screening tools exist for providers to choose from. Evaluating the sensitivity and specificity along with ease of application is necessary. ■
PED S S c re e n in g Tool
The PEDS screening tool is written at the fourth to fifth grade reading level, includes eight yes/no questions, two openended questions, and targets parental concerns. This screening The Nurse Practitioner
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SELE C TE D C A P S T O N E P R O JE C T
tool can be com pleted at hom e or in the office setting (see Developmental screening tools for prim ary care). The PEDS screening tool is appropriate for ages up to 9 years and is 75% sensitive and 74% specific, m eaning that the tool cor rectly identifies 75% of the children with true delays and that 74% o f children w ithout delays are correctly classified.3This tool was validated against many other gold-standard tools, such as the Woodcock-Johnson Psycho-Educational BatteryRevised and W oodcock-Johnson III Tests o f Achievement. Patients are placed in categories of low, medium, or high risk w ith those being m edium -to-high risk requiring further testing and referral.3 ■ ASQ Screening Tool
The ASQ-3 is comprised of 21 age-based questionnaires, each of which consists of 30 items to assess a child’s development w ithin five core areas: com m unication, gross m otor, fine m otor, problem solving, and personal-social.10,11 The agebased questionnaires represent development assessment for ages 1 m onth through 5.5 years at the intervals of 2, 4, 6, 8, 9, 10, 12, 14, 16, 18, 20, 22, 24, 27, 30, 33, 36, 42, 48, 54, and 60 m o n th s. Each q u estio n n aire is w ritten at th e fo u rth through sixth grade education level and includes pictures and examples to increase simplicity. Unlike other develop m ental surveillance tools, ASQ-3 encourages parents to not only answer questions but to actually participate in the ac tivities assessed in the ASQ w ith their child. ASQ-3 may be completed in person (home or office) or online and takes approximately 10 to 20 minutes. Each of the 30 questions is answered either “yes,” “sometimes,” or “not yet” and is scored with a maximum of 60 points per domain. The instrum ent includes an overall score as well. Grading takes less
than 2 minutes, and the results are plotted onto a grid and fall into one of three areas: The white area represents a child’s developm ent is w ithin norm al limits; the gray area is the m onitoring zone and indicates the child may be at risk for developmental delays; and the black area designates further assessment is needed.10 The ASQ-3 is not m eant to diagnose developmental delays but rather to recognize any abnormalities. The overall standardization of ASQ-3 was based on the testing of 15,138 children o f various races, ethnicities, and social-economic status.12 The sensitivity and specificity of the ASQ-3 is 86% and 85%, respectively.10 Studies o f the validity o f ASQ-3 in p reterm infants by H albw achs and colleagues and Schonhaut and colleagues have indicated that ASQ-3 may be m ore sensitive for those children who have severe developmental delays than those who have mild-tom oderate delays.11,13 Even though the sensitivity and specific ity of ASQ-3 may be variable for preterm infants, it continues to be a flexible, easy to use, and valid surveillance tool for the general population in recognizing developmental delays in children from 1 m onth to 5.5 years of age.10 Moreover, the questionnaires are easy to complete, and parents tend to like the interactivity o f the questions because it teaches them about their child’s development, which makes them feel more involved with the developmental milestones.12 ■
M-CHAT-R and M-CHAT-R/F
The CDC has estimated that 1 in 68 children was diagnosed w ith Autism Spectrum Disorders (ASDs) in 2010 according to data obtained through their Autism and Developmental Disabilities M onitoring network, which is a 23% rise from 2009 and a 78% increase from 2007.9 Prim ary care providers are th e fro n tlin e in th e rec o g n itio n an d assessm ent o f
Developm ental screening tools for primary care 8 ,10 ,15 , 17,2 0,2 2 Screening tool
Ages used
PEDS
Birth-9 years
ASQ-3
Every 2 m onths fo r the first 8 months. M onthly at 9 and 10 m onths
Recommended ages for universal screening
Sensitivity
Specificity
9 m onths 18 m onths Either 24 or 30 m onths
75%
74%
9 m onths 18 m onths Either 24 or 30 m onths
86%
85%
Every 2 m onths from 12 to 24 m onths Every 3 m onths from 27 to 36 m onths At 42 m onths Every 6 m onths from 48 m onths to 60 m onths of age
36 The Nurse Practitioner • Vol. 40, No. 4
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Pediatric developmental screenings: A primary care approach
Autism spectrum disorder screening tools for primary care 8 10 15 17-2022 Tool
Ages used
M-CHAT-R
16-30 m onths
M-CHAT-R/F
16-30 m onths
Recommended ages for universal screening
Low risk
Medium risk
High risk
18 and 24 m onths as part of w ell-child care
Total score 0-2, if child is younger than 2 years, rescreen at 2 years
Total score 3-7
Total score 8-20
Im m ediately after M-CHAT-R to fo llo w up fo r m edium -risk and high-risk M-CHAT-R screenings
Not Needed
Adm inister, if score is 0-1, this is negative. Rescreen at future visits
Bypass M-CHAT-R/F and refer im m edi ately for diagnostic evaluation and early intervention
If score remains 2 or higher, refer for diagnostic evaluation and early intervention
developmental abnormalities— particularly ASDs— because they are usually the first point-of-contact for m ost families.14 The AAP recom m ends that all children be screened for au tism during their 18- and/or 24-m onth well visits.8 The m ost popular tool to assess the risk o f ASDs is the M-CHAT, which was developed by two neuropsychologists, Diana Robins and Deborah Fein, and a clinical psychologist, Marianne Barton in 1999. This free screening tool was developed to identify ASDs (directly) and general developmental delays (indirectly) in toddlers between the ages of 16 and 30 months within the primary care setting and is available in 14 languages.15 It is comprised o f 23 “yes-or-no” questions written at the sixth grade reading level and is completed by the parent or caregiver in the office within approximately 5 to 10 minutes. The ques tionnaire can be scored in less than 2 minutes, and, if needed, a follow-up interview can be initiated if greater than three gen eral items or two critical items are elicited on the assessment. If the items remain unchanged, then the primary care provider should refer the child for further evaluation by a team special izing in ASD diagnosis and treatment. Though it has been useful in recognizing and helping to diagnose ASDs for the past decade, the M-CHAT yields high false positives, meaning that a large num ber of children who scored poorly on the questionnaire were not diagnosed with autism.16Because of this lack of sensitivity, a revised M-CHATR with follow up (M-CHAT-R/F) was developed and intro duced in December 2013 by Robins, Fein, and Barton.17 The M-CHAT-R is a free two-step screening tool that is similar but m ore sensitive than the original M-CHAT, detecting m ore cases o f autism overall (67 per 10,000 versus 45 per 10,000).18 www.tnpj.com
The modifications to the questionnaire include the n u m ber of “yes-or-no” questions reduced from 23 to 20, items reorganized so that the 7 questions that best indicate autism are placed in the first 10 questions listed, the language simpli fied, and examples added to clarify the questions.19 The sec ond step to the M-CHAT-R is grading the questionnaire and determ ining if the child is at a low, m edium , or high risk for autism. If the risk is low, then the M-CHAT-R is repeated at the 24-m onth-old well visit. If the risk is m edium , then the exam iner will adm inister a follow -up questionnaire, the M-CHAT-R/F, and, if the patient remains at m edium or high risk, th en the child is referred for further evaluation (see
Autism spectrum disorder screening tools for primary care). Robins and colleagues found th at 47.5% o f children who scored in the m edium - to high-risk areas were at risk for ASDs with a confidence interval of 95% and, of those, 94.6% (95% confidence interval) were at risk for developm ental delays in general, thus illustrating that the M-CHAT-R/F is an easy, efficient, and reliable tool to assess risk o f ASDs.20 ■ When to refer Once developmental screening has been completed, appro priate referrals are necessary if concerns have been identified or risk factors are in place. Being knowledgeable about the tim ing and choosing of an appropriate provider when m ak ing a referral are two im portant considerations for the NP during the screening and interpretation process. A child who is identified to be at risk for developmental delay or has failed a developm ental screen should be im mediately referred for further evaluation.8 This includes a The Nurse Practitioner • April 2015 37
S ELE C TE D C A P S T O N E P R O JE C T
com prehensive m edical and developm ental evaluation as well as a referral to early intervention or early childhood services. This is especially helpful for children who are at increased risk for developm ental delays or later academic underachievem ent, based on risk factors such as socioeco nom ic or medical diagnoses.8 With many pediatric subspecialists available to choose from, the task of choosing the appropriate provider can be daunting. Neurodevelopmental pediatricians, developmental and behav ioral pediatricians, pediatric neurologists, psychiatrists, and APRNs working in these areas can perform diagnostic evalua tions for developmental concerns. If ASD is suspected, the child should be referred to a specialist who has experience and ex pertise in working with this population. This would likely be one of the above listed providers. Other pediatric professionals, including geneticists, occupational therapists, physical thera pists, speech and language therapists, audiologists, early childhood educators, and special education teachers may be an integral part of the interprofessional team depending on the chief complaint and developmental concern. The prim ary care provider in the pediatric medical home is an essential link between parents, com m unity service pro viders, and pediatric subspecialists. Prim ary care providers coordinate care that ensures children who are identified as at risk fo r d e v e lo p m e n ta l delay o r c h ild re n w ho fail a developmental screening tool undergo a thorough medical evaluation to rule out any underlying medical reason for the developmental delay. W ith an increase in the percentage of u n d erly in g etiologies being identified in children w ith developmental delay, a comprehensive medical evaluation with pediatric specialists is recommended for all children at risk. This evaluation may include, but is not limited to, brain im aging, X-rays, genetic testing, and m etabolic testing.8 Although determining an underlying etiology may not change the course of treatm ent or therapies that will be initiated, there are some benefits to determining if there is an underly ing medical condition contributing to the developm ental delay. Baily and associates concluded that determ ining an etiology for a delay can assist with various com ponents of treatm ent and may affect future decision making, such as family planning or medical research eligibility.21 ■
Im p lic a tio n s fo r p r a c tic e
Factors to consider when implementing screening tools into a prim ary care setting include time needed to complete, score, and incorporate screening results into the treatm ent plan as well as staffing patterns, clinic setting, and clinic flow when deciding which implementation strategy is most appropriate for a given clinic. Barriers to screening can be overcome by the initiation o f a consistent, evidence-based screening and referral system that is culturally sensitive and family centered.22 38
The Nurse Practitioner • Vol. 40, No. 4
Once a child is determ ined to be at risk, it is im portant for healthcare providers to be knowledgeable about referral resources available near their location. For an underserved population or rural populations, this may be a challenge with one possible solution being telehealth for rural communities. Collaborative partnerships between rural health clinics and m ajor urban medical centers or university hospitals could be helpful in the prom otion o f referral and continuation of care. A mixed m ethods study in a mid-Atlantic urban setting revealed that only 51% of those referred for early interven tion services completed the referral, suggesting that barriers to follow through exist.2 Referral tracking mechanisms, au thorization to release m edical records for the purpose of sharing inform ation between the referring and specialty clinics, an d case-m anagem ent services are ap p ro p riate interventions for these populations. ■
A h o lis tic p e rs p e c tiv e
APRNs are well versed in approaching patient care from a holistic perspective and understand the benefit of ongoing surveillance an d screening. U tilizing a system atic and evidence-based approach for surveillance and screening of pediatric patients has been shown to lead to early interven tio n , im proved fu n ctio n in g , an d a lesser b u rd en on the patient and family. The screening tools discussed provide one such option to ensure an evidence-based approach to patient care and a strong foundation w ith im proved o u t comes for practice. © R EFERENCES 1. Malik F, Booker JM, Brown S, McClain C, McGrath J. Improving developmental screening among pediatricians in new mexico: findings from the developmental screening initiative. Clin Pediatr (Phila). 2014;53(6):531-538. 2. Morelli DL, Pati S, Butler A, et al. Challenges to implementation of developmental screening in urban primary care: a mixed methods study. BMC Pediatr. 2014; 14:16. 3. Mackrides PS, Ryherd SJ. Screening for developmental delay. Am Fam Physician. 2011;84(5):544-549. 4. Earls M, Curry E. The AAP autism screening guidelines. Integrating screening guidelines into primary care practice. 2011. http://www.aap.org/en-us/ professional-resources/practice-support/quality-improvement/QualityImprovement-Innovation-Networks/Documents/Autism_PreSIP.pdf. 5. San Antonio MC, Fenick AM, Shabanova V, Leventhal JM, Weitzman CC. Developmental screening using the ages and stages questionnaire. Infants & Young Children. 2014;27(2):111-119. 6. Valleley RJ, Evans JH, O’Dell S, Allen KD. Developmental screening in rural primary care: real-world application. Clin Pediatr (Phila). 2013;53(9):900-905. 7. Hagan JF, Shaw JS, Duncan PM. Bright Futures: Guidelines for Health Supervision o f Infants, Children and Adolescents. 3rd ed. Elk Grove Village, IL: American Academy of Pediatrics. 8. Council on Children With Disabilities, Section on Developmental Behavioral Pediatrics, Bright Futures Steering Committee, Medical Home Initiatives for Children With Special Needs Project Advisory Committee. Identifying infants and young children with developmental disorders in the medical home: an algorithm for developmental surveillance and screening. Pediatrics. 2006; 118(1 ):405-420. 9. Developmental Disabilities Monitoring Network Surveillance Year 2010 Principal Investigators, Centers for Disease Control and Prevention (CDC).
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Pediatric developmental screenings: A prim ary care approach
Prevalence of autism spectrum disorder among children aged 8 years— autism and developmental disabilities monitoring network, 11 sites, United States, 2010. M M W R Surveill Summ. 2014;63(2): 1-21.
20. Robins DL, Casagrande K, Barton M, Chen CM, Dumont-Mathieu T, Fein D. Validation of the modified checklist for autism in toddlers, revised with follow-up (M-CHAT-R/F). Pediatrics. 2014; 133( 1):37-45.
10. Squires J, Bricker D, Potter L. Ages & Stages Questionnaires, Third Edition (ASQ-3) User’s Guide. 3rd ed. Baltimore, MD: Paul H. Brookes Publishing; 2009.
21. Bailey DB Jr, Skinner D, Sparkman KL. Discovering fragile X syndrome: family experiences and perceptions. Pediatrics. 2003:111(2):407-416.
11. Halbwachs M, Muller JB, Nguyen The Tich S, et al. Usefulness o f parentcompleted ASQ for neurodevelopmental screening of preterm children at five years o f age. PLoS One. 2013;8(8):e71925.
22. Frankenburg WK. Developmental surveillance and screening o f infants and young children. Pediatrics. 2002;109(1):144-145.
12. Bedford S, Walton S, Ahn J. Measures o f child development: a review. Policy Research Unit in the Health o f Children, Young People and Families, https:// www.ucl.ac.uk/cpru/documents/review_of_measures_of_child_development. 13. Schonhaut L, Armijo I, Schonstedt M, Alvarez J, Cordero M. Validity of the ages and stages questionnaires in term and preterm infants. Pediatrics. 2013; 131 (5):el468-el474.
Amy A. Williams is an Instructor and Pediatric Nurse Practitioner, Medical University of South Carolina, College o f Nursing and Department of Pediatrics, Charleston, S.C.
14. Johnson CP, Myers SM, American Academy o f Pediatrics Council on Children With Disabilities. Identification and evaluation of children with autism spectrum disorders. Pediatrics. 2007;120(5):1183-1215. 15. First Signs. Recommended screening tools, http://firstsigns.org/screening/ tools/rec.htm#asd_screens. 16. Earls MF. Behavioral and developmental screening advice from ABCD states’ experience. PediatrAnn. 2013;42(7):266. doi:10.3928/00904481-20130619-03 17. Autism Speaks. Modified checklist for autism in toddlers, revised (M-CHAT-R). http://www.autismspeaks.org/what-autism/diagnosis/ screen-your-child. 18. US Department o f Health 8c Human Services. Revised autism screening tool offers more precise assessment, http://www.nih.gov/news/health/dec2013/ nichd-23.htm. 19. Oswald D. A revised M-CHAT. http://www.autismva.org/sites/default/files/ M-CHAT%20RF.pdf.
Carrie L. Cormack is an instructor at Medical University of South Carolina, College of Nursing, Charleston, SC. Katherine Chike-Harris is a pediatric nurse practitioner at Fetter Health Care Network, LLC, Charleston, SC. Catherine O. Durham is an instructor and pediatric nurse practitioner at Medical University of South Carolina, College of Nursing and Department of Pediatrics, Charleston, SC. Terri O. Fowler is an instructor and family nurse practitioner at Medical University of South Carolina, College of Nursing and Division of General Internal Medicine Hospitalist Program, Charleston, SC. Elizabeth A. Jensen is an instructor and family nurse practitioner at Medical University of South Carolina, College of Nursing and Department o f Pediatrics, Charleston, SC. The authors have disclosed that they have no financial relationships related to this article. D O I-10.1097/01 .NPR.0000461949.15668.ee
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