7 ADVERSE EFFECTS AND SAFETY
11.3 Capacity of the health-care system and access to photodynamic therapy
PHOTODYNAMIC THERAPY
In 2002, in Québec, about 33 retinologists were able to administer photodynamic therapy to ARMD patients, but only 15 of them did so.
Québec's main urban centres (Montréal, Qué-bec City and Sherbrooke) are home to most of these retinologists and most of the necessary facilities. It should also be noted that, based on information provided by a representative of the manufacturer of verteporfin, some oph-thalmologists—fewer than five, all of whom are in regional practice—administer PDT as well.
Each retinologist performed about 40 to 50 PDT treatments a month, which works out to about 7,400 treatments a year for all the reti-nologists concerned. This number of treat-ments does not, however, correspond to the number of patients treated, since, as it will be recalled, a given patient receives an average of three treatments the first year following diag-nosis and several others during the subsequent years. The number of treatments administered in Québec was well below the number of ARMD patients eligible for PDT (see Section 10.3)
Based on information obtained from the com-pany Coherent-AMT in 2002, there were 15 lasers (Opal Photoactivator™) in different parts of Québec. Technically, treatment time with the device is about 20 minutes. Even if the instrument can be used nearly continu-ously for an almost unlimited amount of time, it is obvious that a retinologist would find it difficult to devote all of his/her time just to patients with ARMD. However, with a certain amount of calibration, the instrument could potentially be moved from one physical loca-tion to another. It would therefore be possible for several other specialists to share an in-strument, which could increase the number of treatments performed.
In 2003, one university hospital reduced its Visudyne® budget by about 60%10. Only com-plex cases are treated there, while the less complex cases are referred to private clinics. It is very important to note that, despite the sav-ings realized by the hospitals concerned, these measures lead to additional costs to the
10. Based on information provided by the MSSS (personal communication, June 8, 2004).
tients, since the physicians who perform this procedure at private clinics usually bill them for the cost of the medications and anesthet-ics. The patients must also make a copayment to obtain the drug at a pharmacy, which can amount to $200 to $839 a year, depending on the category of insured. It should be borne in mind that this treatment may be dispensed every three months for several years. It could therefore financially overburden some pa-tients. On the other hand, to meet the needs of ARMD patients, some retinologists have de-cided to practice in the private sector so as to be able to treat them as quickly as possible.
To illustrate the care organization-related problems that could prevent patients from be-ing treated within a reasonable amount of time, we conducted, in the summer of 2002, an exploratory study using semistructured in-terviews with seven retinologists in different settings: university hospitals, general and spe-cialized hospitals, and private clinics. In addi-tion, we contacted ophthalmologists (or recep-tionists, depending on the physicians’
availability at the time of the interview) at public and private ophthalmology clinics.
These clinics are located in several of Qué-bec's administrative regions. The following is a summary of the information obtained during these interviews.
According to the interviewees, in general, a patient who notices symptoms that might sug-gest a degenerative eye disease first consults an ophthalmologist. Since an ophthalmologist does not necessarily have all the expertise re-quired to determine the exact form of ARMD, he/she will often refer the patient to a physi-cian specializing in the retina. In most cases, only retinologists are able to perform the treatment. Afterwards, the retinologist must determine the exact form of ARMD using fluorescein angiography. If this examination shows that the patient is eligible for PDT treatment, the retinologist should perform the treatment within a week. A period of one
week between the angiogram and PDT en-sures optimal therapeutic efficacy [Bressler, 2001; TAP Study Group, 1999]. During our interviews, a number of individuals reported a problem with access to angiography. They in-dicated that the problem is due mainly to a lack of medical imaging personnel, nurses and technicians qualified to perform the proce-dure. In addition, ARMD patients are not the only ones who need to undergo angiography.
This points to a certain lag between when a patient notices the problem and when he/she is treated, which could result in the treatment be-ing less effective, in a loss of vision and, as a result, in substantial costs. Again, based on the information obtained during the semistruc-tured interviews, we reconstructed the typical itinerary of an ARMD patient (Figure 13).
The first time period is between the onset of the disease and its detection by the patient.
According to the practitioners who were in-terviewed, the amount of time in question var-ies the most. Given that the disease is usually unilateral in onset, the patient can compensate with the fellow eye and does not necessarily notice any symptoms until this eye is affected as well. The rate of progression of the disease is highly variable as well.
The second time period is between when the patient notices the symptoms and the first appointment with an ophthalmologist. Vari-ability in the waiting time could, to a large ex-tent, be explained by the severity of the symp-toms experienced or described by the patient and the region in which the ophthalmologist practices. Naturally, when a patient presents with symptoms such as acute pain, hemor-rhage or a discharge, an ophthalmologist will see him/her very quickly. However, a patient with ARMD will seldom have such symp-toms. Some patients may also go through an-other intermediary, an optometrist or a general practitioner, which would now lengthen their itinerary.
FIGURE 13
Typical itinerary of a patient with ARMD (information obtained during the 2002 interviews)
The time period between the appointment with an ophthalmologist and that with a reti-nologist varies as well and depends on a num-ber of factors. The retinologist's symptom se-verity perception is the main factor contrib-uting to this variability. Thus, the average wait for a first visit with a retinologist is one week to about two months when the ophthal-mologist determines that the patient probably has neovascular ARMD. However, at some hospitals, when fluorescein angiography has not first been performed by an ophthalmolo-gist, the patient may wait for up to six months for his/her appointment. It is important to note that ophthalmologists do not systematically order an angiogram. Furthermore, some reti-nologists try to synchronize the patient's an-giogram and appointment because of a lack of access to angiography or because the patient lives in a remote area. This can increase wait-ing times. Several retinologists also told us that if a patient presents to the emergency room of a hospital with a well-structured oph-thalmology department, he/she will be seen the same day and treated, if eligible, very quickly. Lastly, the wait can also vary accord-ing to the region where the retinologist practices.
The last time period that could be improved is between the visit to the retinologist and the fluorescein angiogram. As a general rule, a patient can undergo angiography within two weeks after his/her visit to the specialist.
However, because of the aforementioned lack of personnel, the patient may have to wait for up to a month for this examination. Lastly, photodynamic therapy is usually performed within 15 days after the angiogram.
Thus, based on the information obtained, the period of time between when a patient notices a visual abnormality and when he/she receives a first PDT treatment can be quite long. De-spite the inherent limitations of the method we used, it is worth noting that a survey con-ducted in 2002 by the Fraser Institute among general practitioners and specialists tends to confirm the waiting times mentioned in our interviews. The survey found that, in Québec, the average waiting time to see a medical eye specialist was 11 weeks and that the average wait for ophthalmologic treatment was 27 weeks (6½ months) [Esmail and Walker, 2002]. It should, however, be pointed out that the survey did not specifically concern ARMD. One should also consider the fact that
PDT Onset
of the disease Detection by
the patient Ophthalmologist Retinologist Fluorescein angiography Other options for the
patient
Hospital eye emergency room (patient seen the same day)
ARMD patients generally have to see two medical eye specialists (an ophthalmologist and a retinologist) before receiving treatment.
To optimally implement this technology will therefore require major changes to the organi-zation of health-care services. There will need to be better coordination between ophthalmol-ogy, retinology and optometry services, and between such services and hospitals.