Pediatric ophthalmology requires two-pronged practice management

Knowing how to comfort children and talk to parents is integral to successful exams, treatment and follow-up, experts say.

Anthony P. Johnson

Recently, a couple walked into the office of Anthony P. Johnson, MD, FACS, with an infant suffering from retinoblastoma. The parents were not legal residents, and there was the fear that if they went into hiding, the child would not get the necessary treatment. Dr. Johnson had to decide in that moment to take a strictly dogmatic approach with the parents to save their child’s life.

“Because I was afraid they might disappear somewhere, I made it very clear: ‘If you don’t follow up with this, your child will die,’” Dr. Johnson, an Ocular Surgery News Pediatrics/Strabismus Section Member, said in a telephone interview.

Although this is an extreme example, Dr. Johnson’s experience illustrates the complexity of being a pediatric ophthalmologist.

According to experts in the field, being a pediatric ophthalmologist means caring not just for the child, but the parents as well.

Reducing anxiety levels

How the ophthalmologist presents himself can determine how well a child’s examinations and subsequent treatment will go. It is therefore important not only how the physician enters the examination room, but also how the patient and parents are greeted when they arrive at the office, according to OSN Pediatrics/Strabismus Section Editor Robert S. Gold, MD.

“I think one of the things that sets pediatric ophthalmology apart from the general or subspecialty adult ophthalmologist is you have to take care of both the child and the parent in the same setting,” he said. “I try to have the experience start with how they are welcomed into the office, making sure the front office staff is friendly to the parents, answering any questions they have so that the parents hopefully, initially, are comfortable.”

Physicians can reduce the child’s anxiety by having appropriate toys in the waiting room. But the anxiety of the parents is also a major concern.

“They have been told by the pediatrician that something is wrong. They noticed that something is wrong. The grandparents often are worried. Everything is multiplying their anxiety. So when they are brought back into the examination room by my ophthalmic technician, I try to make sure that the technicians are friendly, smiling, personable and very positive to try and make them comfortable,” he said.

During the examination, Dr. Gold recommended wearing colorful clothes, ties illustrated with cartoon characters and using things such as finger puppets as fixation targets.

“I try to be animated. I wear bright-colored clothes, in general. I try not to wear too much in the way of white shirts, which may scare the children,” he said. “It’s not only an examination, but we have to entertain them to get their attention properly.”

Offering diagnosis and treatment

If the examination uncovers an ocular problem, the ophthalmologist must carefully consider how he will present treatment solutions. There are situations, as in Dr. Johnson’s case, where there is no room for discussions. But in many cases, it is a matter of offering various options and encouraging the family toward the best choice.

“I often personalize it and say this is what I would do if this was my child,” Dr. Gold said.

Edward L. Raab, MD, a professor of ophthalmology and pediatrics at the Mount Sinai Medical Center, said when faced with a situation such as strabismus, which may call for surgery, physicians should still give parents alternatives and then allow them to choose what they want to do.

“[Parents] have to be presented with alternatives to surgery, but they don’t have to be given alternatives as though any choice is as good as any other choice that could have been made. If … surgery is by far the best thing for this child, you have to tell people that surgery is by far the best thing for this child,” he said. “You must also tell them … that they have the option of deciding to leave things just as they are, but you don’t have to make that as palatable as doing surgery.”

Communicating with other physicians

Communication with pediatricians and other pediatric subspecialists is an integral part of any pediatric ophthalmology practice, according to Dr. Johnson.

“I send letters to pediatricians and so forth all the time,” he said.

Pediatricians are the main source of referrals for pediatric ophthalmologists and can help ensure patients follow through with treatments.

“I call and speak to them periodically. It’s probably more frequent that they call and tell me what they are worried about and what the patient has got going on. Then, on the ones like a retinoblastoma patient, I will call them right back and say this is what it is, this is what we need to do,” Dr. Johnson said.

Pediatric ophthalmologists starting a practice should visit their local pediatricians and pediatric subspecialists and keep track of new pediatricians in the area to begin building relationships, Dr. Gold said.

“When I first went into practice … I visited almost every pediatrician in the Orlando area, and I introduced myself to let them know I was here,” he said. “The marketing of your practice never ends.”

Working with pediatricians and subspecialists has been complicated by the Health Insurance Portability and Accountability Act (HIPAA). The Privacy Rule, which took effect on April 14, 2003, was meant to establish rules regarding the disclosure of patient health records.

According to some physicians, they now post their HIPAA policy throughout the office and provide patients with pamphlets explaining the laws. But aside from creating more paperwork, HIPAA has not changed how they handle patient information.

“I think providers, in general, have always protected the record. We’ve never wanted to go out and publicly proclaim somebody’s record without their permission,” Dr. Johnson said. “I think that HIPAA probably has created more confusion from a practice management point of view and extra paperwork and sometimes even requires more hoops for the family to jump through than even necessary.”

Controversies in ROP treatment persist Retinopathy of prematurity treatment is one of the most challenging issues facing pediatric ophthalmologists because many have become apprehensive about caring for premature babies, according to one ophthalmologist. Roberto Warman There are very few adult retina people that are willing to treat these babies, and there are less and less pediatric ophthalmologists who want to treat,” said Ocular Surgery News Pediatrics/Strabismus Section Member Roberto Warman, MD, during a telephone interview. Despite the best efforts of the ophthalmologist, some babies will inevitably go blind. This can ultimately result in lawsuits garnering seven-figure awards, he said. “It’s not a matter of doing good medicine. It’s that we are in the real limit of what is feasible to do sometimes, but the expectations are 100% results,” Dr. Warman said. The good news is that recent advances in retinopathy of prematurity (ROP) treatment, such as cryotherapy and diode laser therapy, are resulting in improved visual outcomes in these patients. As a result, the American Academy of Ophthalmology, the American Association for Pediatric Ophthalmology and Strabismus and the American Academy of Pediatrics have created recommendations for care that doctors should follow strictly to ensure optimal outcomes and avoid unnecessary examinations. The recommendations, posted on the AAO Web site, include screening children with a birth weight of less than 1,500 g or a gestational age of 30 weeks or less, documenting conversations with parents and ensuring the availability of follow-up examinations. The recommendations also include tables outlining appropriate timing for the first eye exam based on gestational age at the time of birth. “You are checking to see when there is a higher chance that they will go blind if you don’t treat than if you do treat,” Dr. Warman said. Often, babies are lost to follow-up. When this happens, risks for blindness go up and questions arise regarding whether the parent or the physician is at fault. Communication between the neonatal unit and the pediatric ophthalmologist is critical so that these problems do not occur, Dr. Warman said. “Whenever a patient gets discharged or transferred, many of them get transferred back to their initial hospital. We have to contact our fellow pediatric ophthalmologist up there and say: ‘This baby is there now, could you please see it? It’s due,’ and then we communicate with each other,” he said. Recent studies have shown that survival rates of premature babies are going up as neonatal intensive care units improve (see related article), which means more potential ROP cases to treat. Although visual outcomes are improving in these babies, Dr. Warman said he recommends defensive medicine. “In this area, every word I write in my documentation, all the planning of the office, all the backup, everything is based on absolute defensive medicine first, and that is very sad,” he said. For more information: Roberto Warman, MD, can be reached at Miami Children’s Hospital, 3200 SW 60th Court, Suite 103, Miami, FL 33155-4072; 305-662-8390; fax: 305-661-7862; e-mail: rwarman@eyes4kids.com. References: Cryotherapy for Retinopathy of Prematurity Cooperative Group. Multicenter trial of cryotherapy for retinopathy of prematurity: ophthalmological outcomes at 10 years. Arch Ophthalmol. 2001;119:1110-1118. Phibbs CS, Baker LC, et al. Level and volume of neonatal intensive care and mortality in very-low-birth-weight infants. N Engl J Med. 2007;356:2165-2175.

Compliance

Compliance can be tough when treating children, but the difficulty increases when the ophthalmologist is dependent on a second party to see the treatment through, Dr. Gold said.

“The most common compliance issue in pediatric ophthalmology, at least in my practice, is having the parents comply with amblyopia therapy,” he said.

When recommending therapies such as patching, practitioners must learn to be patient with parents who become frustrated with slow progress. If the physician takes a dogmatic approach or lectures rather than encourages, parents may not return, according to Dr. Johnson.

“The better they understand it … it gives them a better opportunity on the difficult days to not just give up and say, ‘This didn’t do any good. I can’t see any measurable results, and therefore we are just going to quit,’” Dr. Johnson said.

Recent studies from the Pediatric Eye Disease Investigator Group have loosened treatment regimens and made compliance easier to manage, according to Dr. Gold.

In one randomized trial published in the June 2006 issue of Ophthalmology, researchers found that after spectacle treatment, 2 hours of daily patching combined with 1 hour of near visual activities helped improve moderate to severe amblyopia in young children.

“Most of us will now start patching children 2 hours a day and stress that we are doing it less,” Dr. Gold said. “[We are] showing the parents that we are trying something to help them instead of saying you’ve got to patch them every single minute of every single day.”

Sometimes correcting a problem such as strabismus will require a variety of techniques, including surgical intervention and patching. However, parents tend to think that surgery alone will produce an immediate outcome. In these situations, it is up to the physician to carefully explain the treatment as a process, according to Dr. Raab.

“I always tell them it’s not about how well this operation will work. It’s about how well all the things we are doing, surgical and nonsurgical, will work to make your child, at the time they reach visual maturity, have two good eyes that work together,” he said.

It is expected that a family may want a second opinion before moving forward with treatment. Treating the parents with compassion and understanding in these situations should come first, Dr. Gold said.

“Every once in a while, you have a family that comes in and no matter what you say to them, it’s not good, and no matter what you say to them, they don’t trust what you say to them,” he said. “In those types of situations, I don’t hesitate to say, ‘This is my opinion. I have almost 25 years of experience in doing what I am doing. Please get another opinion to make my opinion more comfortable to you, and then decide what’s best for your child.’”

For more information:

• Robert S. Gold, MD, can be reached at 225 W. State Road 434, Suite 111, Longwood, FL 32750; 407-767-6411; fax: 407- 767-8160; e-mail: rsgeye@aol.com.
• Anthony P. Johnson, MD, FACS, can be reached at 601 Halton Road, Greenville, SC 29607; 864-458-7956; fax: 864-458-8390; e-mail: apj@jervey.com.
• Edward L. Raab, MD, can be reached at the Department of Ophthalmology, Mount Sinai Medical Center, 1 Gustave L. Levy Place, Box 1183, New York, NY 10029; 212-369-0988; fax: 212-289-5945; e-mail: eraabmdjd@aol.com.

Reference:

• Wallace DK, Pediatric Eye Disease Investigator Group, et al. A randomized trial to evaluate 2 hours of daily patching for strabismic and anisometropic amblyopia in children. Ophthalmology. 2006;113:904-912.

• Jared Schultz is an OSN Staff Writer who covers all aspects of ophthalmology. He focuses geographically on Europe and the Asia-Pacific region.