brief

Developmental Screening Tools

Ages 0 - 17 Years

The American Heart Association (AHA) recommends regular neurodevelopmental screening of patients with congenital heart defects (e.g., Sood et al, 2024). Screening tools can alert parents and providers to possible neurodevelopmental delays or disabilities, and enable care teams to refer families to early and appropriate intervention.

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In this section

Screening Tools Infant Screening Tools (0-12 Months)Early Childhood Tools (Ages 1 - 4)Middle Childhood Tools (Ages 5 - 12)Teen Screening Tools (Ages 13 - 17)Adult Screening Tools (Ages 18 - 24+)Questions of Validity

Screening Tools

Many screening tools can be implemented easily within a general pediatric or specialist cardiology practice without significant disruption of regular operation. These tools can help medical providers to track individual patients' development, and to identify potential concerns early in development, when intervention is most effective.

Infant Screening Tools (0-12 Months)

Infant screeners may include:

the Ages and Stages Questionnaire (ASQ-3)
Parents' Evaluation of Developmental Status (PEDS-R)
PEDS-Developmental Milestones (PEDS-DM)
the Survey of Wellbeing in Young Children (SWYC)
Symbolic and Communication Behavior Scales (SCBS)
Early Childhood Screening Assessment (ECSA)

Early Childhood Tools (Ages 1 - 4)

Toddler and preschooler tools can include:

the Ages and Stages Questionnaire (ASQ-3)
Parents' Evaluation of Developmental Status (PEDS-R)
PEDS-Developmental Milestones (PEDS-DM)
Modified Checklist for Autism in Toddlers (MCHAT)
the Survey of Wellbeing in Young Children (SWYC)
Pediatric Symptom Checklist (PSC-17)
Symbolic and Communication Behavior Scales (SCBS)
Early Childhood Screening Assessment (ECSA)
Early Literacy Screener (ELS)

Middle Childhood Tools (Ages 5 - 12)

Middle childhood screeners can include:

the Ages and Stages Questionnaire (ASQ-3)
Parents' Evaluation of Developmental Status (PEDS-R)
PEDS-Developmental Milestones (PEDS-DM)
Child Development Inventories (CDI-2)
the Survey of Wellbeing in Young Children (SWYC)
Pediatric Symptom Checklist (PSC-17)
Strengths and Difficulties Questionnaire (SDQ)
Early Childhood Screening Assessment (ECSA)
Screen for Child Anxiety Related Emotional Disorders (SCARED)
Pediatric Quality of Life Scale (PedsQL)
Early Literacy Screener (ELS)

Teen Screening Tools (Ages 13 - 17)

Teen screeners can include:

Patient Health Questionnaire (PHQ-2)
Child Development Inventories (CDI-2)
Pediatric Symptom Checklist (PSC-17)
Strengths and Difficulties Questionnaire (SDQ)
Transition Readiness Assessment Questionnaire (TRAQ)
Screen for Child Anxiety Related Emotional Disorders (SCARED)
Autism Spectrum Quotient (AQ)
Pediatric Quality of Life Scale (PedsQL)

Adult Screening Tools (Ages 18 - 24+)

Screeners for adults can include:

Patient Health Questionnaire (PHQ-2)
Transition Readiness Assessment Questionnaire (TRAQ)
Screen for Child Anxiety Related Emotional Disorders (SCARED)
Screen for Adult Anxiety Related Disorders (SCAARED)
Autism Spectrum Quotient (AQ)
Quality of Life Scale (QOLS)

Questions of Validity

Given the unusual life experiences and developmental risks facing children with heart defects, clinicians should always interpret screening results within a broader developmental context. For example, during early development, a screener such as the MCHAT might over-identify young children as being at risk for autism, when in fact many young children with heart defects are unable to demonstrate the target skills because of motor delays. Researchers have tested the validity of some but not all screening measures in children with heart defects.

Despite these possible limitations, universal screenings offer tremendous potential for medical professionals to identify the presence of developmental concerns, and to refer children for further assessment and/or intervention. The benefit of early identification and early intervention almost certainly outweighs the risk of early false positives on certain developmental screeners.

This content was reviewed by a psychologist and a physician at Boston Children's Hospital.

References

Billotte, M., Deken, V., Joriot, S., Vaksmann, G., Richard, A., Bouzguenda, I., ... & Guillaume, M. P. (2021). Screening for neurodevelopmental disorders in children with congenital heart disease. European Journal of Pediatrics, 180, 1157-1167.https://link.springer.com/article/10.1007/s00431-020-03850-x

Dworkin, P. H. (1993). Detection of behavioral, developmental, and psychosocial problems in pediatric primary care practice. Current opinion in pediatrics, 5(5), 531-536.https://journals.lww.com/co-pediatrics/_layouts/15/oaks.journals/downloadpdf.aspx?an=00008480-199310000-00003&casa_token=g6rY_6Hx2igAAAAA:hU1nliTXbDWB9x7AZYxYG1FBmniobEwTemwlMvujw5ozOU3-c8ppUETytqzR1YrxLKWKxtQAw_SVjAQH_M0gVYQ

Fourdain, S., Caron-Desrochers, L., Simard, M. N., Provost, S., Doussau, A., Gagnon, K., ... & Gallagher, A. (2020). Impacts of an interdisciplinary developmental follow-up program on neurodevelopment in congenital heart disease: the CINC study. Frontiers in pediatrics, 8, 539451.https://www.frontiersin.org/articles/10.3389/fped.2020.539451/full

Hennrick, H., Miller, E., Lai, W., Carmona, V., Flores, A. M., Olson, M., ... & Tan, A. (2023). Effects of Implementing a Standardized Surveillance Program on Cardiac Neurodevelopmental Program Referral Outcomes.https://assets.researchsquare.com/files/rs-3594287/v1/cd1da9dc-f9d6-4d54-b093-f074ba157635.pdf?c=1709565421

Ireton, H. (1996). The child development review: Monitoring children's development using parents' and pediatricians' observations. Infants & Young Children, 9(1), 42-52.https://journals.lww.com/iycjournal/_layouts/15/oaks.journals/downloadpdf.aspx?an=00001163-199607000-00006&casa_token=18XXR7kbX1IAAAAA:KB-ccFYzDD73eYtd7q4VEZrhziONAAzUz8xEhhO3qHpB7Kan1g04WTciEKl7t_FC4UNn49LUCxNXBXwyNRSya7k

Iyer, S. N., Dawson, M. Z., Sawyer, M. I., Abdullah, N., Saju, L., & Needlman, R. D. (2017). Added value of early literacy screening in preschool children. Clinical pediatrics, 56(10), 959-963.https://journals.sagepub.com/doi/abs/10.1177/0009922817702937

Miller, T. A., Sadhwani, A., Sanz, J., Sood, E., Ilardi, D., Newburger, J. W., ... & Marino, B. S. (2020). Variations in practice in cardiac neurodevelopmental follow-up programs. Cardiology in the Young, 30(11), 1603-1608.https://www.cambridge.org/core/services/aop-cambridge-core/content/view/E6E25DF236B7D96EC501DC80BCDD488C/S1047951120003522a.pdf/div-class-title-variations-in-practice-in-cardiac-neurodevelopmental-follow-up-programs-div.pdf

Ortinau, C. M., Smyser, C. D., Arthur, L., Gordon, E. E., Heydarian, H. C., Wolovits, J., ... & Levy, V. Y. (2022). Optimizing neurodevelopmental outcomes in neonates with congenital heart disease. Pediatrics, 150(Supplement 2).https://watermark.silverchair.com/peds_2022056415l.pdf?token=AQECAHi208BE49Ooan9kkhW_Ercy7Dm3ZL_9Cf3qfKAc485ysgAAA2YwggNiBgkqhkiG9w0BBwagggNTMIIDTwIBADCCA0gGCSqGSIb3DQEHATAeBglghkgBZQMEAS4wEQQMwcFoQ1R2U8MjeoU5AgEQgIIDGULwvazkAJbCPlBf2UcnzhYO4sGHeL92gdiNt_yT0gg2Ma8acLTtXydEZiJhUV-Xyn8bjPvfklG2ZYPAby9MwqZITAyh0mpO_VF9WIbNFG_DRhAPmp6kg-EG0QBwsdwZ70xFxP9teDl1aU0LDLNv4L7n1Atrzdt7L3AgwPKdqnBmaDhhplm9RAVH3USX-8fgWsTJwfOBQ6EsK1Pu-7SNoNOkJI0WSFGDN-qtj2saEAu94uWvy_Aj-p363YzHvn3JL_3b0NThw-UNSrL70YruiAemnHEpJNulQ8J7s8j6IRmWZnH3csGaZPRIgtnv2pJUcIFNpPcuoic2C0yl6uQxI0txBU7bx2ebcBUUI-B1vIVW17aUaFdRsXEFMsReoEGjth2cxqEqJf0bZiudssGpDP4kcNzmzMA3Gi90uxbzR_g5XLVXhTNnyuareZAnKYb5tYW0V4K8XB-6EW5R32K0roso2E2OkOJXc1ri6b_GmFj17itvstcDGlVxeozZFPHDn5DpuAS4LOUSc_zUuR9AhJE_Ju9Ux40Tu4bkkUDt_O6JEGZPrN5hIsleiqWSV2Wh83Wkq3pO87PSDXacaWGBEgpPhi3hGwx94BeY6gdGlDp7hsx8wdDfjpZA4x4jXrtMr5CR5W25h525x2AzojC0c1N-SqqJPSg27sMDs4mUolmGkoY686jFx5j7Hhe6QpDlbbAkdfZtvVZYNBbWdJk_COz7vA-ODnVARqll0fAcBIdAHS8cmJLkzZMqO5MPkI_KWaZAgHQEzET1yS-RDUILGTTU-GNlhjtlrVHrDz7PvJBX8UiJzh0fqUNOZF9kqHeGSAcT_jr343MpdAdF6fqiOeTyw11RfMF22YizBHcmSSLaPcAPqVsFI0Hspzpf67EfFcKmIrsCqgOxzcFRtsYVW_AUFhBofE7ulhy9hfVk5jP7DQ2vrGErj5oIfIL0fyR7waVQxmq5bfN_eD7gexg0z_YsG3FcDIGKe_WMeOMWOJ0ZLoSMjNDDq7rxiUbGhr-4dj2G5N6lx5Shg3wFZJk2CdCxX_EarSmSksU

Raches, C. M., Hines, E. N., Hines, A. C., & Scott, E. K. (2024). Identifying Autism Spectrum Disorder in a High-risk Follow-up Program through Quality Improvement Methodology. Pediatric Quality & Safety, 9(2), e717.https://journals.lww.com/pqs/fulltext/2024/03000/identifying_autism_spectrum_disorder_in_a.1.aspx

Rydz, D., Srour, M., Oskoui, M., Marget, N., Shiller, M., Birnbaum, R., ... & Shevell, M. I. (2006). Screening for developmental delay in the setting of a community pediatric clinic: a prospective assessment of parent-report questionnaires. Pediatrics, 118(4), e1178-e1186.https://watermark.silverchair.com/zpe010060e1178.pdf?token=AQECAHi208BE49Ooan9kkhW_Ercy7Dm3ZL_9Cf3qfKAc485ysgAAA6cwggOjBgkqhkiG9w0BBwagggOUMIIDkAIBADCCA4kGCSqGSIb3DQEHATAeBglghkgBZQMEAS4wEQQMm4JrblajlXxKT_byAgEQgIIDWkns3-C3bD_uH98DdHvMfY91SIvlYz6szlFUde4sSRHHYJ-Xmlb63VTGhht7_RY3dDiCq4GciS4c3qU3oz5Evz9EbfDAwHmsNCsypLq9RshtphMut14eGWc5FRADV9sxVxkGgnCKAW4IOE4jvijti_uHXoTFUflMeGgQ6Y52TOfLHOAUDW3mTQc6ArCVQYYQB-rPJ-PIf9XnE8x20fCkknND6PsxJ5Z_e1OwmyZ84xMkHw_ZJAWj3u7JYJbQiP48ca54DIoPDiskPvF-qzxGktNAGldfK87_gI013FcuoRzbx06vlHYkM3xZr3CkBoRALACVFympWSmua1umvunXx3BvZz-I1UQW1W9H5ycURSLJkoYkFUlPlYrWoU2c_Me7DVhZcTdX8tdObwvKGeDiV-_78J4fh8M2K5WhKqcA4_uA28ImPAnzCkvb91_CBmZB2gNzJrBk9bTYxwcrnv7kvyjIYRNxWpfYJDaMVBq6kgA-61ONKxhgNwFMOyeVQo36XFCnLPymX04lniMd188q49eeLuASLaHbV9Q-3IVrf-Tgb8K-xOxOataIPQW4ss7KLVauhlnQ38aBWKgfVt624BFKRjTgVjnlB9Zrc996bSzC_q81lX1YoNU88xvYc8J5lgbjz9qvu89TsAQdpEaesXjJSVOU2n2njkxAYp7hwRqCEL7nsPvXTYjXXHomNu5zhFG4p1s4nC3HZAUxvFUX5I1vsyw6jpuZblaXhRxbbITS8mpruJB2zKyUWM44eEMaSLJdj8IFowYw_1uIr7R5YXJ4SAjqKoggw_3osltctGDGmLmvg_ouxu8adVomvncnNzwJX08iI3bJzKRYRNQU7AKBtEBB4DfFQiPbMRNXtkqSYKh7FrZwUKaPhrdF0Kozwg0ZUgJtmIatiI8k6PeuLCB3cAyWwqHf0NjdxbfQIY3mgm_n_SHY8oy_l9oWwsqTNjJbaF0KqNXUK_BnDYuFE4J4j057LVfty5honKW6YYpaGm6oAQ9kO-iCBZyyBVmpx6Wn4MgqArMxzz1ZHEiSArfEpfTkdiAeLGWabTw6iw0SgLZPogpFTp0sXNUpNH16wm0WTnjSKFh9hvvW_XhB8YqDgbT5s6Dq43xh3E5JhaYDsszBZE3AFnD8ZA

Sheldrick, R. C., Marakovitz, S., Garfinkel, D., Carter, A. S., & Perrin, E. C. (2020). Comparative accuracy of developmental screening questionnaires. JAMA pediatrics, 174(4), 366-374.https://jamanetwork.com/journals/jamapediatrics/article-abstract/2760904

Sood, E., Newburger, J. W., Anixt, J. S., Cassidy, A. R., Jackson, J. L., Jonas, R. A., ... & American Heart Association Council on Lifelong Congenital Heart Disease and Heart Health in the Young and the Council on Cardiovascular and Stroke Nursing. (2024). Neurodevelopmental Outcomes for Individuals With Congenital Heart Disease: Updates in Neuroprotection, Risk-Stratification, Evaluation, and Management: A Scientific Statement From the American Heart Association. Circulation.https://www.ahajournals.org/doi/pdf/10.1161/CIR.0000000000001211

Tripathi, T., Harrison, T. M., Simsic, J. M., Cabral, T. I., & Heathcock, J. C. (2022). Screening and evaluation of neurodevelopmental impairments in infants under 6 months of age with congenital heart disease. Pediatric Cardiology, 43(3), 489-496.https://link.springer.com/article/10.1007/s00246-021-02745-4

Ware, J., Butcher, J. L., Latal, B., Sadhwani, A., Rollins, C. K., Soto, C. L. B., ... & Wernovsky, G. (2020). Neurodevelopmental evaluation strategies for children with congenital heart disease aged birth through 5 years: recommendations from the cardiac neurodevelopmental outcome collaborative. Cardiology in the Young, 30(11), 1609-1622.https://www.cambridge.org/core/services/aop-cambridge-core/content/view/655B54C895CFD7DFBEFB650EEF3C63F6/S1047951120003534a.pdf/neurodevelopmental_evaluation_strategies_for_children_with_congenital_heart_disease_aged_birth_through_5_years_recommendations_from_the_cardiac_neurodevelopmental_outcome_collaborative.pdf

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