Covering New Ground
Insights to help you explain verteporfin therapy and set expectations.
Your patient understands AMD. Now, it's time to deliver more promising news: "You're a candidate for verteporfin therapy."
This is where a fresh set of patient education strategies kicks in. Here are some practical tips --from initial exam to follow-up care -- to help you maximize both efficiency and satisfaction.
What's the treatment? PDT and its results
"When physicians explain verteporfin therapy, patients sometimes respond with, 'Oh, it doesn't fix the problem -- you have to keep doing it forever!'" Dr. Slakter says. "It's not a complex treatment, but it doesn't have the same simple, pass-or-fail result as laser therapy. We need to set the stage, explaining the concept of chronic therapy and setting clear expectations."
Panel members explained how they approach this challenge.
"We present verteporfin therapy as the best FDA-approved treatment option for the patient's lesion," says Mr. Holmes. "But our practice is in southwest Florida, and our large retiree population is fairly well-educated in macular degeneration and the available treatments. Our practice reaches several thousand people through local seminars every year, and that helps, too. We don't need to work very hard to 'sell' verteporfin therapy."
Many of Dr. Fineman's patients arrive with some knowledge of verteporfin therapy, as well.
"Recently, I've had patients come in and actu-ally ask for the treatment. They learned about it through family members or the Internet or advertising," he explains. "But I tend to keep their expectations very modest in terms of vision outcomes. I tell them the goal of treatment is to maintain the vision they have now; improvement is rare, but vision will worsen if the AMD is left untreated. Most patients understand when I explain it that way."
To enhance patients' understanding, Dr. Fineman explains that he's treating the leakage, not their vision. He tells them that they'll gauge success by the reduction in leakage seen on a fluorescein angio-gram. As treatment progresses, he shows them how the leakage is improving on the angiogram.
"I don't think you can ever overemphasize the role of digital imaging," agrees Dr. Slakter. "A picture is worth a thousand words. The single best educational tool is to show patients what's happening."
Like his colleagues, Dr. Hughes tells patients that only a small percentage of people have improved vision after verteporfin therapy. But he's also sure to note, "What's been most striking for me about verteporfin therapy is that some patients have a tremendous improvement in contrast sensitivity. A patient might be able to read with a magnifier, and they feel positive when they see that change."
What can I expect? The procedure and recovery
Once patients understand the big picture, they want to know about the practicalities. What's the procedure like? What should they expect in terms of recovery and side effects?
"I want my patients to know what to expect," says Dr. Hughes. "In particular, that there will be a number of treatments -- the manufacturer's protocol says five to seven -- so they shouldn't expect final results after a single treatment. The family should be aware of this, as well, in case the patient needs to be reminded. I document this discussion in the chart, noting that I gave the patient information about risks and benefits."
Despite physicians' efforts, patients sometimes emerge from the exam room with holes in their understanding of verteporfin therapy, says Charity Stout, R.N. "They know they have AMD and some abnormal blood vessels growing. Most often, I have to repeat why they're getting treatment and how long it will take," she says.
"Often, patients don't understand that macular degeneration is a chronic disease," she notes. "They as-sume they'll have one treatment and the disease will be gone, so I have to reinforce that it's a chronic disease and there will be follow-up visits and a lifetime of vigilance."
Patty Gumina, R.N., has a similar perspective, noting she often needs to temper a patient's unrealistic ex-pectations of "cure."
"By the time the patient gets to me, I need to check their expectations about the treatment," she says. "Patients tend to feel that because this is a revolutionary treatment, it's going to fix everything. I emphasize that this is an ongoing therapy and the goal is to maintain their current level of vision."
In addition to setting expectations about treatment outcomes, Dr. Hughes is careful to describe what patients can expect during the recovery process.
"In describing recovery, I explain that because there's intravenous delivery, the drug could infiltrate into the skin, and they need to stay out of the sun for 5 days," he says. "Also, about 2% of patients have significant back pain; and in rare cases, some even have chest pain," he says. Patients also need to understand how the treatment may affect their vision.
"Some patients have a significant reduction in vision, which is very frightening to the patient," Dr. Hughes explains. "I tell patients that in dim light, they'll see a circular spot in the middle for a few weeks, and their vision will fluctuate. That's normal."
Mr. Holmes's staff also takes advantage of time during preparation and treatment to reinforce expectations, side effects and postoperative precautions. Ms. Gumina notes this tactic is more than just a time-saver. "During the treatment, the patient is starting to relax, and that's when questions may arise," she says, "You can have a nice one-on-one conversation."
Several panel members use checklists to make sure they've covered all the information patients need.
"As a technician or nurse is dilating the patient before treatment, she goes through a checklist to make sure we've discussed sunlight precautions and the patient has brought a long-sleeved shirt or jacket and gloves," Ms. Gumina says. "When the patient moves into an exam room for treatment, the nurse handling the infusion repeats all the precautions again. As a final test, we ask patients to repeat the instructions back to us. The checklist and this test help us make sure we don't miss anything."
Is that clear? PDT consent forms
No discussion of expectations is complete without consent forms. Many practices have a consent form specifically for verteporfin therapy (see the sample form on page 8), and the panel members recommend reviewing the form with patients.
"In addition to our consent form for verteporfin therapy, patients also sign a form saying that the doctor explained both verteporfin therapy and other treatment options," Ms. Stout says.
"I think this is critical," Dr. Slakter adds. "Patients sometimes hear what they want to hear, and I think having a written reminder of the discussion really helps. In our office, we have a family member present as a witness, if possible. And we ask the family member to read the consent form aloud to the patient. We ask, 'Do you understand this? Does your dad understand it?' It involves both of them even more in the treatment process."
During the consenting process, Mr. Holmes's staff members review risks and side effects, giving patients and family take-home information. "And we assure patients that they can call us any time with questions," he says. "They're not alone."
When's the next appointment?
Scheduling follow-up care
When and how often will patients need to return for additional treatment or follow-up care?
"Our office calls the patient the next day," says Dr. Hughes. "Psychologically, it's important for patients to hear that what they're experiencing is normal. Then we see them 4 to 6 weeks after treatment and if they're doing fine, another 6 weeks after that for an angiogram."
Dr. Fineman also sees patients at 6 weeks for an examination and reassurance, and then repeats the angiogram at 3 months. Physicians in Mr. Holmes's practice don't have a set protocol. "A patient might come back 1 month or 6 weeks post-op," he explains. "It depends on the extent of the CNV and other factors in a patient's case."
Regardless of the schedule, the panelists agree it's essential to call or see patients soon after treatment not only when it's clinically necessary. It's an opportunity to answer questions and put their minds at rest, as well as to reinforce their education.
SAMPLE CONSENT FORM FOR VERTEPORFIN THERAPY
I authorize the physicians of Retina Consultants of Southwest Florida to perform photodynamic therapy laser treatment in an attempt to stabilize the following condition:
( ) Bleeding and/or swelling from macular degeneration
( ) Other: _____________________________________________________________
Visudyne photodynamic therapy is a procedure in which the doctor uses a beam of light energy (laser beam) to treat the eye. Visudyne is injected into the arm and activated by the laser treatment. The goal of laser treatment is to try to limit progressive eye damage and maximize your vision. The laser is used to try to stabilize problems, such as active bleeding or swelling in the eye, and other conditions. It is usually necessary to repeat the procedure on one or more occasions.
Without laser treatment, your condition may progress and your vision may continue to decrease and/or complications may occur. Although uncommon, it is possible that your current ocular status may stabilize or improve without this procedure.
Although photodynamic therapy is often successful, it is possible that it will not help you. It is even possible that your eye may be worse after the treatment. Because of these facts, your doctor can make no guarantee as to the result that might be obtained from the procedure.
There may be alternatives to this procedure available to you, such as other types of surgery or the use of medications. However these alternative methods of treatment carry their own risks and varying degrees of success. Your physician feels that, at this time, photodynamic therapy provides you the best chance of successful treatment and the lowest risk of complications.
Patients who receive Visudyne will become temporarily photosensitive after the infusion. You should wear the wrist band to remind you to avoid direct sunlight for 5 days. During that time, you should avoid exposure of unprotected skin, eyes or other body organs to direct sunlight or bright indoor light. This includes, but is not limited to, tanning salons, bright halogen lighting and high power lighting used in surgical operating rooms or dental offices. If you must go outdoors in daylight during the first 5 days after treatment, you should protect all parts of your skin and eyes by wearing protective clothing and dark sunglasses. UV sunscreens are not effective in protecting against photosensitivity reactions because photoactivation of the residual drug in the skin can be caused by visible light. You should not, however, stay in the dark and should expose your skin to normal indoor light, as it will help inactivate the drug in the skin through a process called photobleaching.
By signing this, you state that you do not have porphyria and/or do not have liver disease.
I have read or had read to me and fully understand the consent for laser treatment. I understand the risks and alternatives involved in this procedure and have had the opportunity to ask my doctor any questions and all my questions have been answered satisfactorily. I acknowledge that I have been informed of the diagnosis, proposed treatment, feasible alternatives, probability of success, risks and prognosis if no treatment, and I understand that the treatment may not accomplish the desired objectives. I certify that I have been given the opportunity to view the laser video.