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.

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PEDIATRICS Volume 148, number s1, July 2021:e2021050693K                                                                                                  SUPPLEMENT ARTICLE
refer 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 al
that 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

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hold 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
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PEDIATRICS Volume 148, number s1,Downloaded
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Challenges 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
References                    This article cites 18 articles, 3 of which you can access for free at:
                              http://pediatrics.aappublications.org/content/148/Supplement_1/s51#
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Challenges 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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