Challenges and Opportunities to Bolster the Effectiveness of Childhood Screening
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Challenges and Opportunities to
Bolster the Effectiveness of
Childhood Screening
Rosalind B. King, PhD,a Elizabeth Neilson, PhD, MPH, MSN,b Tracy M. King, MD, MPHa
Collectively, through the articles in The term “screening” is used with the condition.1 Accessible
this supplement, the authors identify differently across various disciplines follow-up thus becomes an important
numerous challenges to advancing and research contexts. In the context issue to consider if the benefits of
the science of childhood screening of prevention, screening is defined as screening, diagnosis, and treatment
but also note exciting opportunities the systematic testing of are to be quantified at a population
for future research, including asymptomatic individuals to identify level.
potential advances in terminology, people at an increased risk (or early
theoretical frameworks, and stage) of a disease or condition, with “Surveillance” is another term that
methodologic approaches. The the aim of providing information and has different connotations in
authors’ contributions are grounded other services that reduce the risk of different contexts. In the public
in the existing standards of pediatric complications.1–3 Although this health context, surveillance is
research but enhanced through definition is relatively generally not considered to be an
contributions from developmental straightforward, quantifying the intervention but, rather, an ongoing
science, econometrics, data science, benefits of such screening in clinical system for collecting, analyzing, and
and public health scholarship. practice can be a challenge because using information to assess disease
Implementation of the novel and of factors such as lack of consistent risk and prevalence in a population.
rigorous approaches described follow-up diagnostic evaluation and Within the United States, surveillance
herein (and the development of new, treatment, even in clinical trials. One testing at the population level
yet unimagined innovations) may proposition to address this issue is to conducted to monitor for disease
hold promise for identifying expand the definition of screening prevalence may stimulate prevention
approaches to surveillance and from mere receipt of a screening test and control efforts2 but may not
screening that will be the most to the entire process from invitation explicitly be linked to follow-up and
effective in improving children’s to screening among asymptomatic treatment. In pediatric clinical
health, development, and people through completion of the settings, however, the term
well-being. treatment of the people identified “surveillance” has also been used to
a
Eunice Kennedy Shriver National Institute of Child Health and Human Development and bOffice of Disease Prevention, National Institutes of Health, Bethesda, Maryland
Drs King, Neilson, and King drafted and approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
DOI: https://doi.org/10.1542/peds.2021-050693K
Accepted for publication Mar 31, 2021
Address correspondence to Rosalind B. King, PhD, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, 6710B Rockledge Dr, Room
2305, Bethesda, MD 20892-7002. E-mail: rosalind.king@nih.gov
PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).
Copyright © 2021 by the American Academy of Pediatrics
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: No external funding.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
Downloaded from www.aappublications.org/news by guest on August 24, 2021
PEDIATRICS Volume 148, number s1, July 2021:e2021050693K SUPPLEMENT ARTICLErefer to active monitoring at the children on pathways to different underrepresented groups are
individual level, which can trigger outcomes. These selective forces, included in studies, they may
referrals or interventions.4 often shaped by experiences of contribute proportionally less data,
Innovative methods for assessing socioeconomic disadvantage, can particularly data that can link the
the impact of surveillance and lead to disparities in access to the delivery of screening to subsequent
screening, in all their various forms, preventive care visits in which health outcomes.
are needed to understand and important screenings occur. These
improve their contributions to selective forces can also directly One solution noted by Wallis9 is to
improved child health outcomes. influence health outcomes, consider additional systems with
regardless of whether certain regular contact with children. Her
Gardner et al5 illustrate one such screenings are delivered. Another proposal to draw on child care
approach for assessing the impact of consequence of selection is that the settings dovetails with the socio-
screening using an empirical same behavior may be labeled as ecological model. Teachers and
demonstration of a simulation within the normative range for other early education professionals
model. They outline the qualitative members of one group and have daily interactions with young
dimensions of the screening event pathologized for members of children and their families; they also
and subsequent treatment process regularly observe young children’s
another. Taken together, these
that must hold for interventions to interpersonal skills with other
factors may lead to either
be effective: acceptability, children and caregivers. This
overestimates or underestimates of
accessibility, and fidelity. Their goal microsystem is, therefore, not only a
the impact of screening on health
is to show impact at the level of context through which to
outcomes of interest. Better
population health. Their results understand children’s behavioral
strategies for understanding and
reveal that even the best of health but also a source of data that
accounting for these socio-ecological
screening interventions are can contribute to the evidence base
forces are needed to improve the
vulnerable to failures at each step in for a variety of screening
implementation of childhood
the health care delivery system. recommendations.
screening and translate screening to
They call for greater integration
improved health outcomes. In their article, Graif et al8 also call
both within sectors of health care
and between health care providers for community partnerships and
In her article, Wallis9 describes how
and community contexts, such as data exchanges. Wu et al10 expand
these disparities play out in the
schools. Schools and primary care on this idea of “Moving Beyond the
specific example of autism
providers complement each other; Clinic to the Community.” They call
screening. Diagnostic algorithms for
the former setting is accessible to for a mesosystems approach of
autism screening were developed
children whose parents lack health linking across the contexts of
largely on the basis of evidence
insurance or other ways to pay for families, schools, neighborhoods,
generated in homogenous samples
medical visits, whereas the latter and parents’ workplaces through a
of children. As a result, they may combination of individual surveys,
setting can reach teenagers who
imperfectly predict the risk for dyadic data, and administrative
have reduced engagement with or
children from underrepresented records. Community- and systems-
have dropped out of formal
education. groups. The potential impact of this level longitudinal linkages create the
lack of representation in potential for modeling shared risks
Building on a tradition of bringing foundational studies is magnified in different communities on the
Bronfenbrenner’s ecological systems among low-income children who basis of webs of connectedness.
theory into health research,6,7 Graif experience discontinuities in Social media and genomic data
et al8 outline a 5-stage socio- primary care. In these cases, present further sources of currently
ecological model for pediatric electronic health record evidence of untapped potential. Such blending of
screening. Their 5 stages situate screening and the management of multiple data sources can be done to
individual children within screening results may be missing, provide a more holistic and
broadening contexts from the whether because of a lack of meaningful portrait of key health,
microsystems of families, social preventive care, the dispersion of developmental, and functional
networks, and health care providers data among multiple providers, or outcomes.
to the macrosystems of populations the use of low-resourced providers
and public policy. They highlight the who are unable to maintain Kemper et al11 focus on another
selection that can occur within each electronic health records. Thus, even aspect of the ecological model, the
of these levels, often placing when children from passage of time.6 They acknowledge
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S2 KING et althat considering each screening recommended developmental not reveal impacts for many years.
event in isolation, without screenings for infants and toddlers In their work in econometrics,
consideration of the child’s history than commonly used adult health Heckman et al16 also provide
or context, may be easiest to measures do and, thus, may have examples of methodologic
implement in busy clinical settings greater utility for revealing the techniques that may be applied to
and analyze for research purposes. effects of screening-associated pediatric prevention. For example,
However, this oversimplified interventions in randomized clinical they combine bootstrapping and
approach fails to consider critical trials. Moving this area forward may kernel matching imputation to
factors, such as the complexities of require translational collaborations estimate the societal rate-of-return
human development and between developmental and benefit-to-cost ratios of a
relationships between coexisting psychologists conducting basic preschool intervention program
health conditions, that can influence behavioral science research and targeted at young children from
screening results but also suggest applied work by physician-scientists families experiencing socioeconomic
the most appropriate intervention and public health researchers. disadvantage. These methods allow
for a particular individual and projections to populations beyond
setting. Innovative approaches to Brown and Kemper13 take this call those directly observed in the data
for rethinking outcomes one step and across decades of life after the
generating and analyzing
further, by challenging the field to intervention occurs.
longitudinal data and for linking
consider more broadly who may
such data to key outcomes are
benefit from screening, rather than
needed accelerate the science of CONCLUSIONS
simply what is being measured.
clinical preventive service delivery. Although there are many
They question the core screening
Their arguments further explicate methodologic challenges to creating
principle of limiting consideration of
the calls from Wallis9 and Wu et al10 the evidence base for pediatric
benefit to that which is direct to the
for creative approaches to screening, the opportunities cited
patient. Benefits may also accrue to
identifying data sources and analytic above are relevant to multiple
other individuals across the
strategies. stakeholders: funders (eg, National
ecological contexts in which children
are embedded: family members, Institutes of Health [NIH]),
Another component of a researchers, practitioners, health
peers (such as classmates), and
developmentally informed approach care systems, other systems that
future coworkers and neighbors in
for new models is to consider novel serve children (such as schools),
the broader community. Economist
framing of outcomes. Thus, public health officials, and
James Heckman14 has written for
Silverstein et al12 lay out the case policymakers. One effort in which
decades about the measurable
for assessing positively framed these groups could collaborate is
benefit to society of early
outcomes, such as subjective well- data sharing to create larger data
investment in children’s cognitive
being, in addition to traditional systems. The NIH has invested
and noncognitive skills. By an
negatively framed clinical outcomes, deeply in data sharing policies for
extension of this reasoning,
such as the absence of a disease or funding recipients17 and sharing the
screening for lead in one child that
symptoms. This perspective may tap agency’s own resources18 as well as
results in the prevention of
into measures that hold greater exposure to lead for a sibling yields supporting efforts in the related
meaning for children and families. a benefit to society by preventing areas of data science19 and open
To children in elementary school, decline in the other child’s cognitive science.20 The 5-stage socio-
the ability to hear frequencies and noncognitive skills. Connecting ecological model can provide
across the full spectrum of human screening to a public health theoretical grounding for the
vocalization is arguably far less framework also incorporates the development of such systems
important than their ability to hear consideration of justice, whereby it through its attention to the multiple
well enough to make friends and is ethical to screen a child who will contextual dimensions of screening.
follow instructions in the classroom. not receive a direct benefit if the
For their parents, an outcome of harms to that child are minimal and In these articles, the authors also
interest might be hearing well benefits to others are maximized. highlight the scientific potential in
enough to make the required innovative methodologic techniques
academic progress for on-time Finally, Grosse et al15 describe the and study designs. The development
promotion to the next grade. These complexities of conducting cost- and use of subjective well-being
school-aged outcomes occur in much effectiveness analyses of screening measures that are validated for
closer time proximity to the interventions in childhood that may children, adolescents, and families
PEDIATRICS Volume 148, number s1,Downloaded
July 2021 from www.aappublications.org/news by guest on August 24, 2021 S3hold promise for moving the generation, improvement, and recommendations. Am J Prev Med.
evidence base forward beyond implementation of the evidence base 2018;54(1, suppl 1):S63–S69
viewing health as merely the and resulting recommendations 2. Farid-Kapadia M, Askie L, Hartling L, et al.
absence of disease.21 Innovative holds considerable potential for Do systematic reviews on pediatric topics
study designs and analytic methods generating knowledge that can lead need special methodological
(such as accelerated longitudinal to better health outcomes during considerations? BMC Pediatr. 2017;
designs,22 synthetic cohorts,23 or childhood and across the life course. 17(1):57
regression discontinuity designs24) 3. Melnyk BM, Grossman DC, Chou R, et
can be used to reduce the need to ACKNOWLEDGMENTS al; US Preventive Services Task Force.
rely on randomized controlled trials USPSTF perspective on evidence-based
The authors acknowledge the sup-
that require extended durations of preventive recommendations for chil-
port of Dr David Murray, Director of
follow-up before results about the dren. Pediatrics. 2012;130(2). Available
the NIH Office of Disease Preven- at: www.pediatrics.org/cgi/content/
long-term impact of certain tion, and Dr Diana Bianchi, Director full/130/2/e399
exposures or interventions are of the Eunice Kennedy Shriver Na-
reported. Econometric techniques 4. Lipkin PH, Macias MM; Council on Chil-
tional Institute of Child Health and
applied through approaches such as dren With Disabilities, Section on Devel-
Human Development. They are also opmental and Behavioral Pediatrics.
cost-benefit and cost-effectiveness grateful to the other members of Promoting optimal development: identify-
analyses may address issues of the the workshop planning group: Dr ing infants and young children with de-
lack of data to study causal Rachel Ballard (NIH Office of Dis- velopmental disorders through
inference over long periods of time ease Prevention), Dr Rao Divi (NIH developmental surveillance and screen-
by incorporating simulation National Cancer Institute), Dr Dena ing. Pediatrics. 2020;145(1):e20193449
modeling, big data and data Fischer (NIH National Institute of 5. Gardner W, Bevans K, Keller KJ. The
analytics, and natural experiments. Dental and Craniofacial Research), potential for improving the population
In addition, simulation models can Dr Dionne Godette-Greer (NIH Office health effectiveness of screening: a
be used to help policy makers of Disease Prevention), Dr Ralph simulation study. Pediatrics. 2021;148(1):
evaluate whether screening should Hingson (NIH National Institute on e2021050693C
be provided more broadly and in Alcohol Abuse and Alcoholism), Dr 6. Eriksson M, Ghazinour M,
alternative settings when resources Alex Kemper (Nationwide Children’s Hammarstr€om A. Different uses of
for conducting pilot and Hospital), Dr Iris Mabry-Hernandez Bronfenbrenner’s ecological theory in
implementation studies are limited. (Agency for Healthcare Research public mental health research:
and Quality), Dr Suril Mehta (NIH what is their value for guiding
A final important use of the socio- National Institute of Environmental public mental health policy
ecological model is to bring in the Health Sciences), Dr Charlotte Pratt and practice? Soc Theory Health.
social determinants of health, (NIH National Heart, Lung, and 2018;16(4):414–433
including structural racism. The NIH Blood Institute), Dr Eve Reider (NIH 7. Grzywacz JG, Fuqua J. The social ecology
offers research resources for the National Institute of Mental Health), of health: leverage points and linkages.
inclusion of the social determinants and Dr Karen Sirocco (NIH National Behav Med. 2000;26(3):101–115
of health, such as data collection Institute on Drug Abuse). The views 8. Graif C, Meurer J, Fonatana M. An ecolog-
protocols.25 Along with sister expressed by the authors are their ical model to frame the delivery of
agencies in the US Department of own and do not necessarily repre- pediatric preventive care. Pediatrics.
Health and Human Services, the NIH sent those of NICHD, ODP, NIH, the 2021;148(1):e2021050693D
is also soliciting input from the Department of Health and Human 9. Wallis KE. The roadmap to early and equi-
scientific community about Services, or the federal government. table autism identification. Pediatrics.
ameliorating structural racism in the 2021;148(1):e2021050693E
conduct of scientific research.26 For
10. Wu AC, Graif C, Mitchell SG, Meurer J,
example, a recent request for Mandl KD. Creative approaches for
information issued by the Agency ABBREVIATION
assessing long-term outcomes in
for Healthcare Research and Quality NIH: National Institutes of Health children. Pediatrics. 2021;148(1):
called for specific attention to the e2021050693F
introduction of racial and/or ethnic 11. Kemper AR, Letostak T, Grossman DC. In-
bias by the clinical algorithms that REFERENCES corporating longitudinal surveillance into
shape medical decision-making and 1. Kemper AR, Krist AH, Tseng CW, et al. the delivery of pediatric screening serv-
the provision of care.27 This ongoing Challenges in developing U.S. Preventive ices. Pediatrics. 2021;148(1):
scientific enterprise dedicated to the Services Task Force child health e2021050693G
Downloaded from www.aappublications.org/news by guest on August 24, 2021
S4 KING et al12. Silverstein M, Kemper AR, Henderson JT, 18. Trans-NIH BioMedical Informatics can be used to enhance prediction of
Mabry-Hernandez I. Importance of Coordinating Committee (BMIC). Data early childhood psychopathology. Behav
assessing well-being for United States sharing resources. Available at: https:// Res Ther. 2019;123:103484
Preventive Services Task Force www.nlm.nih.gov/NIHbmic/index.html. 24. Venkataramani AS, Bor J, Jena AB. Re-
Recommendations. Pediatrics. 2021; Accessed March 26, 2021 gression discontinuity designs in health-
148(1):e2021050693H 19. National Institutes of Health. Data science care research. BMJ. 2016;352:i1216
13. Brown MJ, Kemper AR. Considering themes. Available at: https://datascience.
25. National Institutes of Health. PhenX Social
screening when there may be minimal nih.gov/. Accessed March 26, 2021
Determinants of Health (SDOH) Assess-
direct benefit to the child. Pediatrics. 20. National Institutes of Health. Open ments Collection. Available at: https://
2021;148(1):e2021050693I Science Prize announces epidemic www.nimhd.nih.gov/programs/collab/
14. Heckman JJ. Skill formation and the eco- tracking tool as a grand prize winner. phenx/index.html. Accessed March 26,
nomics of investing in disadvantaged Available at: https://www.nih.gov/ 2021
news-events/news-releases/open-
children. Science. 2006;312(5782): 26. National Institutes of Health. NIH stands
science-prize-announces-epidemic-
1900–1902 against structural racism in biomedical
tracking-tool-grand-prize-winner.
15. Grosse SD, Kemper AR, Prosser LA. Data research. Available at: https://www.nih.
Accessed March 26, 2021
needs for economic evaluations of gov/about-nih/who-we-are/nih-director/
21. National Institutes of Health. Your Healthiest statements/nih-stands-against-structural-
screening in pediatric primary care: a
Self: wellness toolkits. Available at: racism-biomedical-research. Accessed
research framework. Pediatrics. https://www.nih.gov/health-information/ March 26, 2021
2021;148(1):e2021050693J your-healthiest-self-wellness-toolkits.
27. Agency for Healthcare Research and
16. Heckman JJ, Moon SH, Pinto R, Savelyev Accessed March 26, 2021
Quality. Request for information on the
PA, Yavitz A. The rate of return to the 22. Galbraith S, Bowden J, Mander A. Accel- use of clinical algorithms that have the
High/Scope Perry Preschool Program. J erated longitudinal designs: an overview potential to introduce racial/ethnic bias
Public Econ. 2010;94(1–2):114–128 of modelling, power, costs and handling into healthcare delivery. Available at:
17. Wolinetz C. NIH releases new policy for missing data. Stat Methods Med Res. https://www.federalregister.gov/
data management and sharing. Available 2017;26(1):374–398 documents/2021/03/05/2021-04509/
at: https://nexus.od.nih.gov/10/29/ 23. Luby J, Allen N, Estabrook R, et al. Map- request-for-information-on-the-
nih-releases-new-policy-fordata- ping infant neurodevelopmental precur- use-of-clinical-algorithms-that-have-
management-and-sharing/. Accessed sors of mental disorders: how synthetic the-potential-to-introduce. Accessed
March 26, 2021 cohorts & computational approaches March 26, 2021
PEDIATRICS Volume 148, number s1,Downloaded
July 2021 from www.aappublications.org/news by guest on August 24, 2021 S5Challenges and Opportunities to Bolster the Effectiveness of Childhood
Screening
Rosalind B. King, Elizabeth Neilson and Tracy M. King
Pediatrics 2021;148;s51
DOI: 10.1542/peds.2021-050693K
Updated Information & including high resolution figures, can be found at:
Services http://pediatrics.aappublications.org/content/148/Supplement_1/s51
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Downloaded from www.aappublications.org/news by guest on August 24, 2021Challenges and Opportunities to Bolster the Effectiveness of Childhood
Screening
Rosalind B. King, Elizabeth Neilson and Tracy M. King
Pediatrics 2021;148;s51
DOI: 10.1542/peds.2021-050693K
The online version of this article, along with updated information and services, is
located on the World Wide Web at:
http://pediatrics.aappublications.org/content/148/Supplement_1/s51
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