Dec. 19, 2003 -- When a child has attention deficit hyperactivity disorder (ADHD), the disease does not begin and end with the school day, as any parent can attest. But new surveys show that virtually all doctors focus only on controlling symptoms during school hours, while parents are distressed by ADHD symptoms that the child has at home.
"With several diseases, physicians sometimes don't hear the issues that are critical to the patients," researcher Calvin R. Sumner, MD, tells WebMD. "In this country, the focus with ADHD has been treatment during the school day. The thing we missed along the way is that the problems that [impair] function at school also affect you outside of school. When we heard this, we asked parents what parts of the day were important in ADHD, and we asked physicians. Parents found portions of the day outside of school time to be very problematic, while physicians said they focused on treatment during the school day."
Among the 500 parents surveyed, 61% said their children have ADHD symptoms all day into the next morning when the children are unmedicated. However, among the 125 doctors surveyed, only 19% prescribe medication in doses or schedules so that the children's symptoms are controlled for the entire day.
The parents and doctors differed in their views of appropriate treatment priorities for ADHD. Among the doctors, 96% stated that controlling ADHD symptoms during school hours was a top priority. Among the parents, 8% said that their children only have symptoms during school; often they stated that before-school conflicts were a key problem. However, 28% of doctors rated as "very important" the control of symptoms in the morning before school.
The investigators also found a disconnect between the doctors' stated view of the impact of a child's ADHD symptoms on family function and treatment focused on family time. Among the respondents, 62% of doctors said that the impact of such symptoms in a family's ability to function was "severe" or "moderately severe." However, the doctors also reported 68% of their ADHD patients are only treated during the school day.
"These study results are hopeful," Sumner tells WebMD. "Parents will feel validated because they have observed these findings all along. Physicians will find it helpful because learning better ways to interact with patients is valuable. The better the connection between the family and the doctor, the better the outcome for the patient."
The results underscore how important it is for parents of children with ADHD to communicate their observations to the physicians who treat their children, says Patricia Saunders, PhD, who was not involved in the study. "ADHD symptoms are not necessarily constant during the day," Saunders tells WebMD. "The behaviors that physicians measure and observe may not be the same as those that are seen at school and home." She is a child psychologist and ADHD specialist at Graham Windham in New York City, a child welfare services center where she is the director of the mental health clinic.
She points out that two issues can affect whether a child with ADHD will have symptoms during off-school times, the external structure provided, and the type of medication used to treat the ADHD. She says children with ADHD often do better with planned after-school activities, while time at home may be more fraught with sibling arguments and conflicts over setting the dinner table.
"Home is the most unstructured environment, and that's where the ADHD symptoms are going to come out," she tells WebMD. "Therefore, doctors should listen to parents when they offer observations about problems at home."
If the doctor treating the ADHD thinks that the child's condition is controlled, but the parent thinks otherwise, "the parent needs to ask the doctor, 'What are you looking at?' and 'How are you looking at it?'" she says. "In order to determine whether the child's condition is adequately controlled, the treating professional needs a triangle of information, which includes the teacher's report and the parent's report, as well as the physician's observation."
She encouraged parents to be assertive and proactive in the care of their children. "If you see something the doctor doesn't, spell it out for the doctor and raise questions," she tells WebMD. "Insist on being heard. Parents are the best observers of their children."