Screening, Screening Programs and the Pediatrician

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HEALTH

PEDIATRICS FOR THE CLINICIAN

INTRODUCTION:

Screening

in Child

Health

Care

A. Frederick North, Jr., M.D.

Front the Department of Pediatrics, Unicersity of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania

The eight papers in this symposium have been

brought together to help practicing pediatricians evaluate the place of screening, and of particular screening procedures, in their own practices and

in programs of child health care in which they

participate.

Advancing technology is making available an

increasing number of tests and observations which

might be employed in the early detection of

health problems. The Federal government has

mandated an Early and Periodic Screening

Diag-nosis and Treatment (EPSDT) program for all

Medicaid eligible children, and California has

mandated health screening for school attendance. With this kind of pressure to “screen,” how should

the pediatrician react? We hope that this sympo-5mm

will help

him decide.

The

first two papers discuss definitions and criteria,

the following

five illustrate the application of these criteria in speci-fic areas of current interest and controversy, and the final paper attempts to summarize the current

status of screening and to predict some future

directions for screening in the health care of

children.

(Note: Bound reprints of this section on screening can be obtained from Dr. North.)

Screening,

Screening

Programs

and the Pediatrician

Ken Lessler, Ph.D.

For a pediatrician to evaluate his position and role in the health care of children, he must have clearly delineated what he means by “health.” If, in addition, the pediatrician is to consider his

stance with regard to screening, he must specify

what he means by “screening,” and outline what

constitutes a “screening program.”

The pediatrician’s commitment to child

devel-opment and the “welfare of children” suggests

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PEDIATRICS FOR THE CLINICIAN 609 that he is interested in far more than biological

survival or the absence of disease. His relative

commitment to the two poles of this conceptual

continuum-biological survival vs total human

formation and growth-will strongly affect his

ap-proach to health screening. With one

commit-ment, he will choose to put money and time into identifying comparatively rare but potentially fatal or crippling conditions; with a different per-spective he may advise that resources be devoted

to identifying conditions which are much more

common but less physically dangerous. With one

viewpoint, he will devote energy to identifying

and helping children with language delays and

other learning, social and emotional problems. With the other viewpoint, he may elect to screen only for heart disease, PKU, sickle cell disease and tuberculosis.

Although the choice may often be pragmatic rather than philosophical, the pediatrician must

agree with Richmond and Weinberger that any

consideration of the child “must include elements of the entire social milieu in which children devel-op-the educational system, the social system, the physical and emotional environment itself.”1

SCREENING

Such an expanded concept of health requires a

definition of screening which is less restrictive

than the one recommended to the World Health

Organization (quoted by Frankenburg2 in his

symposium). The following alternative definition is proposed:

Screening is the acquiring of preliminary information about characteristics which may be significant to the health, education, or well-being of the individual and which are ret-evant to his life tasks. The means of data collection must be appropriate and reasonable with regard to the economics of time, money and resources for dealing with large numbers of persons.3

This definition makes it explicit that screening may consider a wide range of characteristics of a child, not simply the likelihood that a disease is present or absent, and that the characteristics se-lected should be relevant to his life tasks. Since the child’s stage of development defines his life tasks, age is an important determinant of which charac-teristics should be assessed through screening.

Measurements related to immediate survival are

most appropriate at the time of labor and deliv-ery. Measures relevant to parent-child nurturance are critical in the first days and weeks of life. The identification of strengths and problems relevant to learning to read and write are of concern as the child enters school, and characteristics relevant to

career planning and reproduction may be most

relevant in adolescence.

The

definition specifies that acquired

informa-lion is preliminary and tentative rather than

diagnostic or conclusive. “Positive” screening

findings indicate a need for more extensive

evalua-lion; however, all too often positive findings are either ignored or are regarded as adequate evi-dence on which to base treatment or other inter-vention. “Negative” screening information is very frequently accepted as conclusive evidence that no problem is present, and often is unrecorded, unreported and ignored. Actually, both “positive”

and “negative” screening information should be

regarded as tentative. Screening data comprise a

part of continued efforts to help the child through

acquiring knowledge about his strengths and

about his weaknesses. Neither positive nor

nega-tive findings should be interpreted as “final”

re-sults.

The definition also specifies that the means of data collection must be practical and economical for use with large numbers of persons. Economy must be considered both in the acquisition of

in-formation and also in the use of the information. If

a test is quick and cheap, but irrelevant and mac-curate, it will cost more in the long run than no screening at all. if, on the other hand, the test is

very time-consuming or expensive to perform, it

must have a very high “pay-off” in the form of

benefits to those screened in order to justify its use for all children in the population. As is discussed by Frankenburg,2 the relative “costs” of false-neg-ative and false-positive test results will be very

im-portant determinants of what characteristics are

considered, what tests are used and what criteria are selected.

SCREENING PROGRAMS

Screening is the acquisition of information; a

screening program puts the information to use.

Screening without a program for using the infor-mation gathered is a waste of effort. Screening programs must be designed not to count problems but to help people.

The

characteristics of diseases and problems which make them suitable targets for screening, and the characteristics of tests which make them suitable for use in screening programs are discussed byFrankenburg. Given suchmformation-gathering

ability, what are the goals of a program that will both gather and make use of such information?

1. A screening program must ensure that

screening information is utilized to provide treat-ment or remediation of the diseases, deficits or disabilities identified and to promote the growth and positive development of each child.

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2. A screening program must provide

informa-tion to those who need it-those who work with

the child.

3. A screening program must be self-critical and self-monitoring, and it must be open to posi-tive change.

4.

A screening program must promote primary prevention, family participation and a commit-ment to individual growth.

A “program” designed to meet these goals may

exist within an individual medical practice, be

part of a formal comprehensive medical care pro-gram, or be a designated screening program in an

agency or community. Some general

considera-tions apply, whatever the setting and scope of the screening process.

Coordinate Information on Multiple

Functions

Most traditional screening programs attend to only a single characteristic: sickle cell trait, PKU, tuberculin sensitivity, learning problems, etc. Most frequently information about one character-istic is useful in the evaluation of other

character-istics. Unless all information from a variety of

screening procedures is brought together in one

place, much potentially useful information may

be sacrificed. Screening for multiple

characteris-tics at a single session makes coordination of

information easier and usually makes both

screening and interpretation more economical

and effective.

Provide Follow-Through for Each Child

The screening program is often complex,

in-cluding initial screening, rescreening of those with positive test results, diagnosis and treatment which may involve referral to more than one pro-vider of services, and continued management and monitoring. Missed appointments or inadequate

transmittal of information can occur at any of

these multiple steps, leading to program failure. This can be avoided by having a single individual follow the progress of each child until the child reaches the endpoint: a negative screening report, a diagnostic report indicating no need for treat-ment, or evidence that treatment is taking place and will be completed. Such monitoring is espe-cially important in multiple screening since a sin-gi e child may require care by more than one spe-cialist for more than one problem.

Provide Necessary Information to All

Care Givers

Unless parents, physicians, teachers and others

concerned with the care of the child receive

necessary information from the screening

pro-gram, the stage is set for duplication or gaps in ser-vices. In addition, those working with the child are forced to proceed without information which

could be of significant help. The program must

plan in advance to provide needed information to appropriate persons, and it must also have a plan for transmitting the information effectively. Pedi-atricians should insist that screening programs supply them with complete reports of all work on their patients.

Provide Program Audit

All program phases, from the first screening to

the final interventions, must be audited or

re-viewed at frequent intervals to be sure that the program is actually operating as planned and that established standards are being followed. Such re-view can be accomplished by a program director,

but periodic review by an “outside” evaluator is

desirable. Without such audits, personnel in vari-ous parts of the program may develop a certain myopia concerning their own role in the total pro-gram.

Provide for Review of Data

Data must be managed to allow for data review that can identify points where preventive or ear-her intervention efforts can profitably take place.

It

usually is not practical for individual projects to attempt “hard” research on outcome, instrument

efficiency, or the determination of numbers of

false positives and negatives; such “hard” research should be reserved for special efforts-those

pro-jects with research staff and program designs

which allow for this type of evaluation.

How-ever, each project should review its own results

to determine what local preventive efforts are

needed.

Provide for Integration of Screening With the

Total

System of Health and Developmental Services

Many screening programs operate within a lim-ited time frame, even though it is clear that long-term benefits cannot be achieved without atten-tion to overall planning. Program organizers must integrate screening into the fabric of the system

within which it operates or screening will be a

one-time affair. Surveillance of health problems over time, updating information, rechecking ques-tionable results, and attending to new cohorts of children will be neglected if the program focuses only on a single year. A pattern of screening must be established, complete with ongoing funds and ongoing responsibilities. Otherwise, we delude ourselves into thinking we have done a good job,

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PEDIATRICS FOR THE CLINICIAN 611 The Pediatrician’s Role as Provider of

Information

It is obvious that much of what has been dis-cussed is as relevant to the screening which is an

everyday part of the pediatrician’s practice as it is

to screening efforts in special programs, schools

and health departments. The pediatrician often

has at his disposal a variety of bits of information about the child which might be of value to others. The child’s teacher, in particular, needs to know

whether there is some developmental slowness

which sets him apart from his classmates, whether he has a vision or hearing problems, severe ane-mia, or rheumatic heart disease. Yet, routine pro-cedures for providing this information to schools

(except, possibly, for school physical exam

re-ports) are not standard in most pediatricians’

of-flees.

This lack of information-sharing is understand-able (although not desirable) since, outside of hos-pita! or clinic settings, the pediatrician often

works alone except for occasional referrals to

specialists. The parents are his primary allies and treatment resources. Yet, teachers see all

chil-dren; and many children are seen by other care

givers who work with them on speech, learning or emotional problems, or physical development.

This overall network of interrelationships too

often becomes obscured, and is not acknowledged and not used.

For example, the knowledge that a child has re-current ear infections is important not only to the pediatrician but also to many others working with the child. How often is the teacher alerted to the manifestations of hearing loss? How often is the child disciplined because he is not “paying

atten-tion”? How much language delay has resulted

from early infections and now needs remedial

help? How many children are helped to deal with the social and emotional impact of reduced hear-ing or are taught to recognize impending infec-tions before they feel pain in their ears? The net-work of persons for whom this specific problem has implications is critical but too often over-looked.

Physicians are accustomed to thinking in terms of a specific cure, not a system of intervention which includes, but is not limited to, specific

treatment. However, many of the areas which

concern pediatricians require the involvement of

parents, teachers, and very often a variety of other

personnel. It is not merely good manners to let

these people know what is going on; one cannot be effective without their attention and coordinated work. They, in turn, cannot work most effectively without the information held by pediatricians.

Pediatricians must be willing to transmit their

own esoteric information in language meaningful

to others, and to convert in-office practices to a

community orientation by making use of parents

and other care givers as therapeutic agents. Pedia-tricians are not alone in their offices; they are re-sponsible for sharing what they know for the bene-fit of the child.

The Pediatrician as Utilizer of Screening

Information

Usually, the pediatrician has available data pro-vided by the child’s parents, possibly some past

medical records, and his own observations. But

most often he is in an information vacuum vis-a-vis the schools and other screening programs in the

community. How many reports do pediatricians

receive from schools about a child’s progress? How many pediatricians receive the results of (1) the routine vision screening done by most schools,

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2) the hearing screening done by large numbers of schools, or (3) results of screening for anemia or

tuberculosis done by health departments? The

pediatrician may learn of problems when

refer-rals are made; but, even then, he is too often pro-vided with scant information. He has a right, an obligation, and a need to know, just as much as he

has the obligation to share his knowledge with

others who are working with him toward the

overall development of the child.

The process of acquiring and sharing informa-tion may at first not seem to be worth the effort, which is often time-consuming and requires much coordination. However, if there is to be a total care program rather than a series of isolated en-deavors, the task must be accepted. Information-sharing is one important start, with all of its impli-cations for trust and mutual caring for children.

Pediatricians are in a position to be heard, to have a say, to make a difference. Sometimes they will directly operate screening programs in the community, but more often they can be advisors, consultants, and positive forces. Their sense of re-sponsibility and sense of what is and is not possible is a very necessary input into all screening pro-grams for children.

REFERENCES

1. Richmond, J. B., and Weinberger, H. L.: Essential Ele-ments for Comprehensive Health Care for Chil-dren and Youth. Paper prepared for the conference on The Role of Maternal and Child Health and Crippled Children’s Programs in Evolving Systems of Health Care, Ann Arbor, Michigan, March

23-25, 1970.

2. Frankenburg, W. K. : Selection of diseases and tests in pe-diatnc screening. Pediatrics, 54:612, 1974.

3. Lessler, K.: Health and educational screening of school-age children-Definition and objectives. Amer. J

Public Health, 62:191, 1972.

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1974;54;608

Pediatrics

Ken Lessler