SPECIAL ARTICLE |
From the Department of Pediatrics, University of Connecticut School of Medicine and Connecticut Children's Medical Center, Hartford, Connecticut
| PREFACE |
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"Every human being, as he grows into childhood, must inevitably be hampered and opposed by the restrictions of his environment, and the best we can hope for is to modify somewhat the urgency of this conflict. The degree to which we are considerate of our baby's early needs, however, may be the measure of his later ability to feel secure in a world of change and to adapt himself to the necessities of circumstance."1(p xi)Aldrich's contributions occurred at a crucial transitional period for child health. In the early 20th century, child health services were almost exclusively focused on the treatment of the sick child, with the modest exception of cursory examinations to detect signs of contagion, milk stations for feeding and weighing, and urban child health conferences for examining and later immunizing children. Subsequent control of infection through improved sanitation, public health measures, the introduction of antibiotic agents, and effective immunization profoundly influenced the scope of child health care, with the founding of the American Academy of Pediatrics in 1930 heralding a shift of emphasis to include health promotion and disease prevention.2 In 1944, Aldrich helped to pioneer this shift through the founding of the Rochester (Minnesota) Child Health Institute, devoted to research on the development of normal infants and children and to a program of delivering child health care to an entire community.
Contemporary efforts to enhance the effectiveness of developmental services similarly occur within the context of a profound transition in children's health services. In the mid-1970s, the recognition of developmental, behavioral, and psychosocial problems as the "new morbidity" of pediatric practice by Haggerty et al3 reinforced an emphasis on prevention and promotion and supported the imperative of early detection and intervention. More recently, we have experienced a remarkable, unprecedented emphasis on enhancing developmental services within primary care.4 Examples include a host of important initiatives including but not restricted to Bright Futures, Healthy Steps for Young Children, and the Assuring Better Child Health and Development program of the Commonwealth Fund and related activities sponsored by the Centers for Disease Control and Prevention, the National Academy for State Health Policy, the National Initiative for Children's Healthcare Quality, the Center for Health Strategies, and the Johnson and Johnson Pediatric Institute. Indeed, to paraphrase Julius Richmond,5 enhancing developmental services in child health supervision is an idea whose time has truly arrived.
My goals for these comments are to reflect on our efforts to enhance the effectiveness of developmental services in primary care and derive implications for both practice and public policy. I hope to both inform views on clinical practice and to inspire advocacy for system reform. A caveat is in order: I have assumed the liberty of offering personal reflections and deeply held beliefs. My views are admittedly influenced by research findings, empirical observations, and good intentions. I will not be constrained by the traditional expectations for a data-driven research presentation or an evidence-based continuing medical education lecture. Let the listener beware!
| BACKGROUND |
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Our early insights regarding developmental services in primary care were shaped by an extraordinary opportunity in the mid-1970s to survey nearly 100 New England pediatricians to examine their attitudes and clinical approaches to developmental disabilities as well as their attitudes toward previous training and then current sources of knowledge in developmental pediatrics. Findings raised some concerns regarding certain approaches to the developmental aspects of child health. For example, only 45% of pediatricians reported including a hearing assessment as part of their initial evaluation of a language-delayed child, and 30% reported that they would exclusively rely on their own clinical judgment to definitively assess a child suspected of being mentally retarded.8 Gaps in training were also identified. For example, 70% of pediatricians rated their overall training in development as inadequate, and only 30% viewed their residency experience as highly valuable.9 These findings served as an effective prelude to the 1978 publication of The Future of Pediatric Education and its call for emphasis on the developmental and biosocial aspects of pediatrics.10
| ANTICIPATORY GUIDANCE |
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Retaining our interest in anticipatory guidance, we embraced Telzrow's definition of "the provision of information to parents or children with the expected outcome being a change in parent attitude, knowledge, or behavior,"14(p14) and inspired by Brazelton's proposition that it serve as ". . . the mechanism for strengthening a child's developmental potential,"15(p533) we asked whether developmental content influenced the effectiveness of anticipatory guidance. We conducted a controlled study to evaluate the value of discussing developmental stages with mothers while providing anticipatory guidance during well-child visits. We again failed to demonstrate a significant effect on any outcome measure, including maternal-infant interaction; maternal perceptions of infant temperament, family adaptation and adjustment, and satisfaction with the infant's behavior and development; and maternal satisfaction with pediatric services.16 We concluded that routinely emphasizing the developmental basis for discussions of specific, age-appropriate issues was not justified. Far from diminishing the value of anticipatory guidance, however, we now better recognized the need to individualize the content of anticipatory guidance, encourage the elicitation of parent-led agenda, and, as admonished by Korsch,17 to discuss matters at the "level of the parents' cognitive, cultural, and psychologic readiness." The theme of parents as partners in the process of child health supervision set the stage for our subsequent focus on developmental monitoring and the early detection of children at risk for developmental and behavioral problems.
| DEVELOPMENTAL MONITORING: THE OXFORD EXPERIENCE |
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Intimidated by the enormous scope of a comprehensive comparison of British and American guidelines, we opted to instead focus on recommendations for developmental monitoring and the early detection of at-risk children.20 We also examined the relevance of such specific strategies to enhance developmental outcomes as home visiting and parent-held child health records and derived implications that, parenthetically, have informed our current efforts to reorganize primary care services in Hartford, Connecticut.21
Initial inspection suggested a conflict between American and British recommendations for developmental monitoring. Although the Academy emphasized the importance of assessing development during all child health supervision visits, the Working Party discouraged routine, repeated developmental examinations. The realization that neither set of recommendations stipulated the routine and regular use of developmental screening tests and that each was compatible with longitudinal monitoring of children's development through the process of surveillance afforded a reconciliation of views.
We identified surveillance as a new concept, broad in scope and encompassing all activities relating to the detection of developmental problems and the promotion of development during primary care. It is a flexible, longitudinal, continuous process in which knowledgeable professionals perform skilled observations during child health encounters. Components include eliciting and attending to parents' concerns; obtaining a relevant developmental history; making accurate observations of children; and, particularly when concerns arise, sharing opinions with other professionals. The process stresses the importance of viewing the child within the context of overall well-being and circumstance.20
Dissemination of the concept of surveillance within the United States proved challenging, as evidenced by critical peer review and a restrained reception to this thesis by the Academy's Committee on Children with Disabilities. An intellectual appeal to Cartesian-like logic, demonstrating the extent to which developmental and behavioral disorders failed to fulfill well-accepted criteria for conditions amenable to screening and the degree to which developmental tests fell short of criteria for use in screening programs, failed to overcome longstanding beliefs in the sanctity of screening. Despite efforts to meticulously and specifically delineate the components of the process, critics equated surveillance with the perils of reliance on subjective impressions.
Multiple factors have contributed to the subsequent acceptance of surveillance, as manifest by recommendations for developmental monitoring in Bright Futures and the most recent statement of the Academy's Committee on Children With Disabilities.23 Neil Schechter, MD (verbal communication, 1988) wisely cautioned against portraying screening and surveillance as inherently incompatible and diametric opposites. Rather than attacking the "strawman" of screening to benefit the promotion of surveillance, we acknowledged the value of incorporating within the latter such tools as parent-completed questionnaires and professionally administered tests while emphasizing the perils of administering and interpreting such tests in isolation.25 Such tools are particularly helpful when used periodically and selectively to strengthen ascertainment and minimize the likelihood of at-risk children eluding detection or when used to perform so-called second-stage screening when concerns arise.
Advances in the science of early detection have further fostered the acceptance of surveillance. Glascoe and Dworkin26 have documented the significance and clinical utility of information from parents, including the validity of parents' concerns, estimations, and report as well as the limitations of predictions and recall. Frankenburg27 signaled a profound paradigm shift in modifying the interpretation of the Denver II. In a significant departure from descriptions of prior versions of the test, the author notes that the Denver II ". . . simply defines the ages at which children accomplish a broad variety of specific tasks" and compares the tool to a growth chart, specifying ages at which children achieve milestones.27(p94) He recommends that the Denver II be simply used as an aid to monitoring children's ongoing development and that the results not be interpreted in isolation but rather within the context of the child's overall functioning and circumstance. Such recommendations are remarkably compatible with the principles of surveillance.
| FROM CHILDSERV TO HELP ME GROW |
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We developed ChildServ in Hartford on the assumptions that children with developmental and behavioral problems were eluding early detection; that many initiatives existed to provide services to young children and their families; that a gap existed between child health services and child development and early childhood education programs; and that Hartford's children and their families would benefit from a coordinated, region-wide system of early detection and intervention for at-risk children. ChildServ was developed in collaboration with the city health department, child health providers, parent groups, child health advocates, and Connecticut's early intervention program. Funding for the design, implementation, and evaluation of ChildServ was provided by a grant from the Hartford Foundation for Public Giving.
The components of ChildServ include: training child health providers in effective developmental surveillance and monitoring; a computerized resource inventory of regional services that address the developmental and behavioral needs of children and families; a triage, referral, and case management system to facilitate access to services and support; and systematic data gathering on the developmental status and needs of Hartford's children to identify gaps in services and advocate for measures to close these gaps. The triage, referral, and case management system forms the core of ChildServ. A phone staff of ChildServ care coordinators provides referrals and follow-up for children and their families. The care coordinators are available via a toll-free telephone number to receive calls from child health providers about individual children for whom they have developmental or behavioral concerns. After identifying appropriate services from the ChildServ inventory, the care coordinators contact families to facilitate referrals to relevant programs and services.
In its first 3 years of operation, ChildServ received referrals of almost 400 children. The majority of referrals were for single needs such as parenting assistance and support for troublesome behaviors, developmental assessment, and speech and language services. Some two thirds of programs and services were accessed at no cost to either the family or a health plan. Successful facilitation of referrals demanded extensive outreach and care-coordination activities.
We have been pleased with the extent to which ChildServ has addressed a critical gap in service delivery to Hartford children at risk for poor developmental and behavioral outcomes. Despite a wide array of available services, the necessary link between these services and the early-detection efforts of child health providers had not previously been forged. We believe that ChildServ is a useful model to strengthen developmental monitoring and early detection and to encourage the successful referral of at-risk children.
The Connecticut legislature funded a statewide expansion of ChildServ, since renamed Help Me Grow, beginning July 2002. Infoline, Connecticut's single-source provider of telephone information on community services, human services, and crisis intervention, now provides a statewide network of care coordinators. Regional service inventories and expanded outreach programs have been developed. The enhanced network encourages calls to the Child Development Infoline from those concerned with children's development including parents, child health providers, teachers, and child care providers. To date, >8000 calls have been received. With support from the Commonwealth Fund, evaluation will assess the efficacy of Help Me Grow in improving child health and developmental outcomes.
| SUMMARY |
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| ACKNOWLEDGMENTS |
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| FOOTNOTES |
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Reprint requests to (P.H.D.) Connecticut Children's Medical Center, 282 Washington St, Hartford, CT 06106. E-mail: pdworki{at}ccmckids.org
This work was presented at the Annual Meeting of the Section on Developmental and Behavioral Pediatrics of the American Academy of Pediatrics, National Conference and Exhibition; Nov 2, 2003; New Orleans, LA.
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