FPs Bring Needed Skill to Care of Children With Disabilities

Family physicians' expertise in caring for patients through all their life stages gives FPs critically important insight into caring for disabled or chronically ill children as they grow through adolescence into adulthood. Family physicians should not cede the care of these youngsters to subspecialists, says Daniel Earl, D.O., of Prescott, Ariz.

"The longitudinal care of children and adolescents with chronic illnesses, including disabilities, is nowhere better served than in family medicine," says Earl, clinical associate professor of family and community medicine at the University of Arizona College of Medicine, Tucson, in a CME video soon to be released as part of the AAFP's 2006 Annual Clinical Focus on Caring for Children and Adolescents. "Longitudinal care is what we do," he adds.

Fitting the Pieces Together

Quality care for children with chronic illnesses or disabilities goes beyond meeting their immediate medical needs, says Earl, who maintains a private practice at Chino Valley Medical Center in Prescott. FPs must fit a subspecialists' findings and treatment regimens into an overall plan that incorporates acute care for routine illnesses; preventive care, such as immunizations; and psychological care that addresses these children's mental health, developing sexuality and overall family environment.

One of the most overlooked issues is a disabled child's transition into adolescence. Subspecialists often fail to look beyond the organ system affected by the child's condition; that oversight can result in a missed or inaccurate diagnosis, says Earl.

Earl reminds his colleagues that disabled adolescents still have hormones, and the wise family physician will include a sexual history in the clinical visit. "There's a tendency to think of some folks as being asexual because of some infirmity or difficulty," says Earl.

He cites the case of a 19-year-old female patient with spina bifida who complained of low-grade fevers and abdominal pain. After being seen by a pediatric neurosurgeon, neurologist and gastroenterologist, she went to a family physician, who correctly diagnosed the condition: pelvic inflammatory disease transmitted from "one of her many sexual partners."

Moreover, a study of teenage women with cystic fibrosis found 22 percent had tried to conceive, and, of that number, 67 percent had succeeded, says Earl.

Equally important is depression, anxiety or other mental health problems among chronically ill or disabled children and adolescents. Earl describes a 16-year-old patient with muscular dystrophy who developed symptoms of depression.

"There's a tendency to think, 'I'd be depressed, too, if I were ventilator-dependent, sitting in a wheelchair all day long,'" says Earl. But rather than overlooking the symptoms as a "natural" result of the youth's condition, Earl prescribed antidepressant medication and the young man responded very well.

Family Issues

"Chronic illness or disability in children can put great strains -- phenomenal strains -- on the family," says Earl.

He urges colleagues to monitor the developmental and emotional well-being of disabled patients' healthy siblings. "Make sure they're not feeling left out and that they know they didn't do anything to cause this and that they can't fix this," he says.

Equally important, disability and chronic illness "can produce a remarkable strain" on marital stability. One study indicates that asthma in children is associated with higher-than-normal divorce rates among their parents; other, more severe disabilities place an even greater strain on the marriages of parents of disabled children. Earl urges colleagues to help parents find respite help that will allow them to have time together, away from the demands of caring for a disabled child.

He also urges family physicians to help parents navigate the medical care maze by developing good relationships with subspecialists and referring disabled children only to those who have a good bedside manner. For example, he says, never send a disabled teen to a gynecologist who doesn't understand adolescent sexuality or who equates disability with asexuality.

Payment Issues

Family physicians shouldn't lose money because they care for disabled or chronically ill children and adolescents, according to Earl. He suggests that FPs negotiate with health plans to include remuneration for the extra time required to care for children with chronic conditions and that they retain a coding specialist who can identify the most appropriate and accurate codes for a disabled child's office visit.

Home visits offer an attractive alternative to traditional office care. "They pay pretty well because there's no overhead involved," says Earl. "You can do a pretty good, comprehensive visit with kids who have limited mobility (by going to their homes). And you can see how they're set up at home and what their environment is."