Patient Compliance
Chat Highlights
August 18, 2004

Norma Devine, Editor

On Wednesday, August 18, 2004, Dr. Rick Wilson, a glaucoma specialist at Wills, and the glaucoma chat group discussed "Patient Compliance."

Moderator:  Welcome back to chat, Dr. Wilson.  Our topic tonight is Patient Compliance.

Dr. Rick Wilson:  Hello, everyone.  I had an emergency case at 6:00 a. m., so I may be somewhat dopey by the end of this session.  I hope you understand.

Moderator:  We'll get started right away.  First, what does patient compliance mean to you?

Dr. Rick Wilson:  It means the patient is following my directions for taking care of his or her condition.

Moderator:  I recently read that studies over the past three decades have shown that non-compliance can range from 20% to a staggering 80%, depending on the kind of treatment.  I also read that the compliance rate for the long-term use of glaucoma eyedrops is 42%.  Does that number sound right to you?

Dr. Rick Wilson:  All of us doctors think that our patients are much better than the average about compliance, but there is a staggering percentage of patients who know they have glaucoma and are not being treated or only use treatment sporadically.  The group at Johns Hopkins found that the best question to ask for glaucoma screening is, "Do you have glaucoma?"

P:  What does that mean?  That some people might forget or block it out of their minds that they were told they have glaucoma?

Dr. Rick Wilson:  It means that, when you are screening people in the community, trying to find glaucoma patients, the best question to ask is not, "Do your parents have glaucoma?" but "Have you been told you have glaucoma?"

P:  Sometimes I think that doctors do not tell patients of the seriousness of not taking the drops.  Besides, since there is no pain and the loss of vision is subtle, it's tempting to "cheat."  

Dr. Rick Wilson:  It is understandable when glaucoma patients don't take their medication.  They have a disease that has no symptoms, and they do not know how much they are hurting themselves when they don't take their medication.  However, pretty much the same numbers for noncompliance are found in patients with urinary incontinence; that is, they can't hold their urine and still don't take their medicine.

P:  I don't understand why compliance should even be a topic in this chat room.  Why would glaucoma patients not be compliant?  I have had glaucoma for 36 years and have been totally compliant.

Dr. Rick Wilson:  You are very much in the minority.  It is a terrible problem.  Cost can also be a problem if patients only take one drop a day, when they should take three, just to stretch the medication.  The increases and decreases of the IOP (intraocular pressure) can be much worse for the optic nerve than if the IOP stayed up at a constant level.

P:  I know that the Editor of Journal of Glaucoma, Dr. Van Buskirk, has stated that the problem of non-compliance is a leading cause of glaucoma blindness. 

P:  Why can the increases and decreases in pressure be much worse for the optic nerve than if the pressure stays at a constant level?  

Dr. Rick Wilson:  The reasons are theoretical and involve the repeated squeezing of the lamina cribrosa.  The lamina cribrosa is the scleral sieve at the back of the eyeball through which the optic nerve exits. 

P:  The cost of the meds is a factor for the uninsured.  I constantly search for the lowest cost meds.

P:  I think the cost of medications is the biggest reason for noncompliance.  Remembering to use the eyedrops is easy; paying for them them is another matter.  Four years after retiring, I went back to work part time to pay for the glaucoma medication and all of my other prescriptions.

P:  My doctor has been cross with me, assuming I wasn't complying when I was.  A couple of times I told him I skipped drops because the blurring drove me crazy.

Dr. Rick Wilson:  I agree.  The side effects of the medication can make patients want to skip their drops.

P:  Think of patients who have dementia and forget to take the drops or those in nursing homes who do not get follow-up care.

Dr. Rick Wilson:  True. 

P:  Isn't it sometimes necessary for the doctor to modify treatment regimens according to particular lifestyles?

Dr. Rick Wilson:  Yes, the drops we use today are much more patient-friendly than the ones we used when I started to practice back in the late 1970s.  The main reason is that prostaglandins and beta-blockers (except for Betoptic) only need to be taken once a day.  That helps compliance greatly.  One study showed that any drops prescribed more than twice a day would probably only be taken as directed by the most compulsive people.

Moderator:  Who here tonight finds it difficult to take your eye drops as ordered and why? 

P:  I find it hard to be compliant because it may take ten years before I notice any damage.  I know I have glaucoma; I know I should take my five drops every day.  I don't want to be blind at age 45, but I still find it difficult to keep up my drops regimen. That is why, after 12 years of using the eyedrops, I am almost at the point of just asking to have eye surgery rather than risk further damage from possible continuing non-compliance.

Moderator:  I have a tough time sometimes and do not feel like using the drops.  I am just plain tired of the same old routine of needing to put my drops in every day and night, close to the same time.  Don't get me wrong.  I do put my drops in, but sometimes, not often, I will be late.  Makes me feel more in control I guess.

P:  Before my trab (trabeculectomy), I was on four meds. The side effects really ruined my quality of life.  I was compliant, but it was tough.

P:  Some patient have told me they use the drops on the day they visit their eye doctors.  Their doctors, of course,  can't tell what effect the drops are having.

P:  I would not do that.  I know my sight is in jeopardy.

P:  I don't find it hard at all; but I'm a mom.  It certainly beats the alternative.

Moderator:  I guess little ones don't have a choice; Mommy will make sure they get the drops.

P:  Compliance should be less of a problem these days with the new glaucoma meds like Xalatan, Lumigan, etc.

Moderator:  Why is Xalatan less of a problem?

Dr. Rick Wilson:  Because you only need to use it once a day.  You can leave it on your bedside stand or sitting by your razor to remember it.

P:  I had no compliance problems using the prostaglandins, but when I was put on a trial of Alphagan twice a day, it was hard to remember to take it during the day.  

P:  Sometimes the afternoon eyedrop was hard to remember when I was using Alphagan three times a day.

Dr. Rick Wilson:  Yes, because in the middle of the day there is nothing to remind you to take it.

P:  Have you ever heard of non-compliance the other way:  Patients self-diagnosing and changing drop regimens?

Dr. Rick Wilson:  Yes, I have patients that self-diagnose and change medications according to their own thinking,  not mine.

P:  When I was on three eyedrops a day, I instilled them upon waking, at lunchtime, and at bedtime.  When a fourth drop was added, I instilled it at dinner time.  I like to eat.

Dr. Rick Wilson:  Trying to link taking drops to some activity that would remind you is a good idea. The only problem is, there are five hours between breakfast and lunch, but nine to ten hours between lunch and bedtime.  That gives more variation to the intraocular pressure than I would like.

P:  I have a really late lunch, so it worked okay.  But that's a good point for many.

P:  Now that I'm retired, I am home at mid-day and set an alarm clock, which helps to remind me.  

Dr. Rick Wilson:  Good idea.  I use a cheap Casio wristwatch with an alarm to remind me when I need to do something.

P:  One problem I see as a nurse is that when patients are asked what meds they use, many don't mention their eyedrops. Then you see the drops sitting at the bedside.  Always remember to include your glaucoma drops when you're asked what meds you take.

Moderator:  Guess what?   I am late with my drops tonight.  I cannot believe it.  I just now remembered.  It's easy to get busy and forget.  

P:  I always keep a combined schedule and log with me.  I record  the time I take my drops.  I have used that method for years.  

P:  Is occasionally skipping an eyedrop considered noncompliance?  

Dr. Rick Wilson:  An occasional drop missed is not noncompliance.

P:  Of the following reasons for noncompliance, which do you think is the most common:  cost, forgetfulness, side effects, poor communication between patient and doctor, something else?

Dr. Rick Wilson:  The main reason for non-compliance is denial. Having a sight-threatening disease is anxiety provoking.  Denial helps us deal with that fear.  All the other things you mention are certainly operant in many people. 

P:  I'm retired and my wife helps me keep up with three kinds of drops, six times a day.  If we aren't going to be home at dose time, we take the drops with us.  That's a nuisance, but it's a small price to pay.   

P:  I think a lot of people are shy about taking drops in public. I once had a boss who told me I should instill the drops in a stall in the men's room.  He, too, had glaucoma.

Moderator:  I hate to take my evening drop the most.  It's tough when you are at a party to excuse yourself for five minutes, then in ten minutes leave again for another five minutes.  But we should not worry about what others think. 

Moderator:  Shouldn't drops prescribed to be used b.i.d (twice a day) be used 12 hours apart?  

Dr. Rick Wilson:  Patients should try to spread out the drops as much as possible.

P:  I take eyedrops three times a day, pills four time a day -- maybe not at the same hour every day, but they are taken.  Does an exact-hour regimen make a difference?

Dr. Rick Wilson:  Not with the prostaglandins or beta blockers, but it does with the other medications. 

P:  Sometimes I just want to quit all my drops for a month before my next appointment, just to see how my pressure would do, to find out whether I still really need to be on five kinds of eyedrops.  I haven't tried it yet, but it's still very tempting.

Dr. Rick Wilson:  Tempting, yes, but it's the "devil" talking to you.  Don't give in.

P:  I can understand that desire.  I am fortunate in having a doctor who went along with me after cataract surgery when I wanted to try a lower dose, then just once a day, then nothing.  I still see him regularly for pressure checks and visual field tests, and will go back to medication if needed.  But my doctor was willing to consider my not needing the medication.  

P:  My routine is to instill the eyedrop, Travatan,  just before I go to bed.  That time varies by four or even five hours.   Is there a problem with that much variation?  

Dr. Rick Wilson:  Not really, because the prostaglandins are such long-acting drugs.

P:  I think that compliance -- specifically, compliance or noncompliance that is voluntary, and not deriving from dementia or financial constraints -- should not be a problem for patients who are 100 percent in control of their therapy.  For example, the decision to initiate medical therapy was mine.  I consult with two glaucoma specialists who do diagnostic testing and tell me what they think I should do, but the decision to treat or not treat is always mine.  So why in the world would I ever not be compliant?  Who would I be kidding?  I know exactly what the reasons are for  taking the medication, and it has nothing to do with anybody else. If, on the other hand, the treatment was imposed on me by my doctors, I might feel differently.  But as the person in charge, I'm not kidding anybody but myself if I don't do what I -- not somebody else -- think is best for me. So I think patients should get in charge of their own condition, and compliance issues should go away.

P:  Doctors do "intelligent noncompliance" with their own medical problems all the time.  

P:  The operative word is "intelligent."  

P:  I am hoping that after SLTs (Selective Laser Trabeculoplasty), my only compliance issue will be visits to the glaucoma specialist.

P:  Time is money.  Waiting around for the drops to "settle" and doing punctual occlusion is a big pain.

P:  I agree.  I find it so hard to stop what I am doing two times a day.

P:  Are there noncompliance problems besides meds, such as not maintaining treatment for dry-eye syndrome or blepharitis or maintaining a healthy lifestyle?  They aren't as important as taking drops, but they can make the patient's glaucoma more difficult.

Dr. Rick Wilson:  Not trying for a healthy lifestyle could easily be noncompliance.

P:  Noncompliance would be wise after eye surgery that has lowered the intraocular pressure too much and your doctor still has you using drops to lower the pressure. 

Moderator:  I think if patients decide to change or stop  medications, they owe it to their doctors to tell them.  Is noncompliance ever smart?

Dr. Rick Wilson:  Never smart without talking it over with your eye MD.

End of highlights for August 18, 2004.

On August 25, Dr. Werner discussed "Glaucoma Clinical Trials" in the Chat room. Click here for highlights of that meeting.

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