By Barbara Howard, MD
Do you remember the discussion of the ethical dilemma of Huntington’s disease you probably participated in during medical school? The question was whether you would want to know that you were at risk for a chronic debilitating condition that would develop at some later age if there was nothing that could be done about it. In that discussion, you also may have heard about individuals who, after hearing about their risk status, become depressed or suicidal, depending on the storyline.
Some pediatricians seem to have taken this example too far in arguing that there is no point in screening for issues of development, autism, maternal depression, or child mental health because “there are no services” available to treat them.
There are important reasons not to succumb to throwing up one’s hands about service availability. And more important reasons to still screen even if you do not know where to refer.
Reasons to screen despite the lack of resources:
1. Screening using validated tools is recommended by the American Academy of Pediatrics.
2. Parent concern and even clinical observation are not adequately sensitive to detect significant problems of development and mental health, even when done by experienced physicians who know families well.
3. The process of screening sends an important message to the parents – that you care about the child’s progress and are using proven methods to ensure that it is going well and consider it part of complete medical care.
4. Developmental screening results can translate into a “child specific developmental curriculum” so you can “prescribe” developmental activities based on what the child has just attained and will find joyful and a way to enhance parent-child interaction and learning.
5. When difficult problems are uncovered your acknowledgment, explanation, sympathy, and advice can help enormously. Families can cope better, garner support from family or friends, deal with the child’s behavior better, and find steps to take to help their child in their own ways, even without formal services, once told that their child has a specific problem.
6. State programs, schools, hospitals, and insurers all have legal requirements to provide services within a certain time frame once referred. Even if the services are not there to help your child or family right now, the referral itself adds to the data used to determine if services are adequate and to plan for additional service types or capacity.
Consequences for not screening:
1. Families may push the child with delays or mental health problems beyond his abilities, and even become negative and punitive in trying to make him succeed, in the process promoting unnecessary behavior problems, discouragement, and even defiance in the child.
2. Failure to detect also means failure to list the child on a registry for a follow-up to determine progress or refer when resources become available.
3. Some problems of development or mental health that are detected by screening may have medical causes that you can treat, even though counseling or therapy interventions are not available, i.e., hearing or vision deficits causing delays or anemia, sleep apnea, or hypothyroidism or maternal depression or attention-deficit/hyperactivity disorder (ADHD).
4. Issues with a genetic basis, siblings may be born with the same problem during the period of delay in making a diagnosis, a prime example being Fragile X.
Until you screen and give parents information – we will never have the resources. As it was for lead paint, until we identified the prevalence of elevated lead levels and the harm associated, we got no action on lead paint removal policies.
You may be one of the many pediatricians who consider advocacy a basic component of your professional responsibilities. If you cannot advocate for services that you see your patients in need of, you can pass your concerns onto a group that does. Many American Academy of Pediatrics state chapters has so-called Pediatric Councils that receive ideas about system problems and put group pressure on leaders in the state to address them.
As in the historic painting of the physician leaning over the ill child whom he could not cure, after detection through screening our thoughtful evaluation, explanations, shared a concern, and our patients’ advocacy has great value even when specific services are not yet available.
Excerpts from Pediatric News
CHADIS offers over 400 tools to help doctors, educators, and parents screen for and monitor a variety of developmental, behavioral health, and general health issues for children and adults. Tools Link
CHADIS provides a curriculum for each child in the form of a Memorybook which displays the milestones from the ASQ as a virtual babybook with a “suggestions” for individual activities related to each milestone.
CHADIS is a unique screening, decision support and patient engagement system designed to streamline and optimize healthcare by providing clinicians with evidence-based data that improves diagnosis and management of health, emotional, developmental and behavioral concerns. www.chadis.com