Discussion
This survey was designed primarily to improve patient care at our site; however, given the size of the SD population in the study, our findings appear to be applicable to other treating physicians.
Of the 431 patients who were diagnosed with SD at Loyola by the time of the survey, 282 (66%) were known for certain to find continuing treatment by injection of Botulinum Toxin Type A beneficial (223 remained in treatment in 1997 plus 59 who were not in treatment at Loyola for reasons found in Table 1 but who stated that it had been beneficial at Loyola). This figure is likely larger, since of those who we could not contact or who did not return their surveys, it is likely that some of them received some benefit from therapy. If we extrapolate the percent satisfied of those who returned their surveys (58%) to the entire surveyed population, and add that number to those continuing treatment at Loyola in 1997, we can speculate that approximately 344 (81%) of the complete Loyola caseload were likely satisfied with Botulinum Toxin Type A treatment.
There are several factors which may make this percentage lower than what we currently experience. First, this survey included some patients who did not return for treatment as early as 1989, when our skill level was lower particularly for abductor SD1,5. In 1989, based on the significant cost of the medication and the distances many patients traveled, a high initial dose was also utilized, feeling that the patient might not need to return as often. As I learned that initial side effects of breathiness and liquid dysphagia were very disturbing to patients who experienced it, the initial dosage was reduced over time. In fact, patients rarely experience unacceptable side effects even on first injection, as our initial dose has dropped steadily from 1989 onward when it was (briefly) 2.5 units per vocal fold, to its current level of 0.5 units per vocal fold. Furthermore, with an intensity not practiced early in our experience, we now stress to patients that the dose will need to be titrated to minimize the severity and duration of initial side effects, because even this relatively low initial dose level is too high for a small percentage of patients. Using these strategies, we have in fact brought some patients who were formerly dissatisfied because of intolerable initial side effects into the satisfied group.
Sedation has been offered to the rare patient whose needle phobias are particularly strong (an estimated 10 patients of our current total of 550). A few of these have found that with time and repeated injection, this is no longer necessary.
Availability of treatment is quite important to patients and the 24 who did find treatment closer to home plus the 14 who stated that Loyola was too far to travel represent 33% of the patients who returned their surveys, and, by extrapolation, 9% of the entire caseload. As future generations of otolaryngologists are trained to recognize the disorder and treat it, availability to the patient should increase.
To some extent, insurance coverage has improved over the past ten years, as Botulinum Toxin Type A injection has become the accepted method of treatment for SD. In the meantime, while taking great care to avoid fraud, physicians can look for creative ways of offering the uninsured this vital treatment.
Summary
Although the majority of patients with SD (an estimated 81% of an early treatment group) were pleased with treatment results, a percentage dropped out due to dissatisfaction. The most common reasons given were no/insufficient benefit, excessive initial side effects, logistical inconvenience, expense, and discomfort. These results have helped us to respond in various ways to increase success/satisfaction rate. First, we supply more focused information to patients concerning what to expect at the time of initial injection. Second, we have steadily decreased the initial dose administered. Third, we have offered day-of-treatment orally administered sedation to the tiny fraction of patients with debilitating needle phobia (est. 1 or 2%). Fourth, we have kept careful lists of physicians offering treatment to try to match patients as close to home as possible. Finally, we have continued to refine our injection methodology, particularly for abductor SD, so that results are as consistent between injections as possible.
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