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Compliance
Compliance
Compliance is a measure of the patient's ability to adhere to a prescribed medication regimen. Compliance is particularly relevant to glaucoma, a chronic disease. Visual loss often begins peripherally, with central vision often preserved until late in the disease.
Meanwhile, patients must commit to taking multiple medications several times daily at regular intervals. These medications may have side effects ranging from minor and inconvenient to serious and disabling.
All for a disease which often has no symptoms.
Compliance encompasses the patient's active participation in his or her own health care: seeking medical advice, keeping appointments, following implicit and overt recommendations concerning life style, diagnostic investigations, and medical and surgical regimens.
Noncompliance
Many patients miss anywhere from an occasional dose to most of the prescribed regimen. Others do not know how to take drops properly, and still others misuse the medications. Noncompliance can be defined as the intentional or accidental failure to comply with a physician's expressed or implied directions with regard to taking medications. The most advanced diagnostic and therapeutic advances techniques are of little importance if the patient is noncompliant. Noncompliance often leads to blindness in patients with glaucoma.
EXAMPLES OF NONCOMPLIANCE
- Failure to take medications. This includes missed doses, premature cessation of therapy, and ineffective methods of taking medications. This last problem is especially pertinent to instilling eye drops.
- Taking too much medication. Some patients, hoping for additional benefit, increase the number of doses and/or the amount taken each time - incorrectly assuming that if some is good, more must be better.
- Taking a drug for the wrong reason. This may arise from confusion about the purpose of using a drug, particularly if several drugs are being used.
- Improper timing of drug administration is more likely to occur if the medical regimen is complex: the administration of numerous medications at frequent or unusual times during the day.
Some patients take medications only just after and before their appointments. Halfway between appointments is the time at which the least number of prescribed doses are taken. Not taking medications can lead to visual field loss in a patient whose intraocular pressures at the time of the visit are measured as being normal. If noncompliance is not suspected or detected, patients may be subjected to expensive and invasive procedures and/or have their already partly ignored medical therapy accelerated (requiring higher drug concentration, number of drugs, and frequency of use), thereby increasing the risk of side effects and even worse compliance.
There are other ways in which patients are noncompliant. These include not filling prescriptions, not refilling prescriptions when the first bottle runs out, and not getting the drops in the eye. It has been found that 3% to 7% of prescriptions written are never filled. Patients may fill prescriptions but never use the drops. They may forget one or more doses, particularly when away from home. One way to get around this is to keep medications both at home and at the office. This dramatically reduces the chances of missing a dose.
In one study, when serum carbon dioxide levels were measured, 35% of patients for whom Diamox had been prescribed were not taking it at all, and an additional 22% were taking it less often than directed. This may not be surprising, because side effects include loss of appetite, tingling of the fingers, weight loss, malaise, depression and fatigue.
PROPER TECHNIQUES OF DROP ADMINISTRATION
Dyscompliance refers to an improper technique of taking medications, even though the patient takes all the prescribed medications. The most important problem in glaucoma therapy is failure to properly space multiple medications and to use nasolacrimal (punctal) occlusion.
Punctal occlusion
The tear duct (nasolacrimal duct) runs from the punctum, a pinpoint opening in the eyelid, into the nose. When drops are put in the eye, some pass through the cornea and get to the inside of the eye, where they are medically effective. Most of the drop, however, runs into the nose, and thence into the bloodstream, delivering the drug to the rest of the body, where they can cause side effects. Side effects are defined as effects of drugs on either the eye or other parts of the body which are not the intended effects for which the medication was prescribed. When pressure is applied with the index finger to the punctum and tear duct for 1 to 2 minutes following drop instillation, about 50% more medication gets into the eye. This gives more effective pressure lowering, a longer duration of action of the drops, more consistent lowering of intraocular pressure, and a reduction in the swings of pressure, in addition to fewer side effects elsewhere.
Drop spacing
When multiple eyedrops are prescribed, these must be taken at a minimum of 10 to 15 minutes apart. Drops taken a minute apart will wash each other out of the eye and the full effect will not be obtained.
This is the most important point we can make about taking glaucoma medications. We have seen patients' pressures drop from 30 to 15 with proper spacing and occlusion. Many other patients, who had progressive visual loss and were facing surgery, stabilized with this simple technique. Some even reduced the amount of medications they were taking.
Other valuable hints about taking drops
Another example of dyscompliance is failure to shake a bottle of steroid suspension prior to instillation, which markedly decreases the amount of drug delivered to the eye. A surprising number of patients are unable to get the drop into the conjunctival sac, even though they think they have. We have seen patients who put the drops on their eyebrows or cheeks and thought the drops were going in the eye. One way to help with this problem is to keep the drops in the refrigerator.
When the drops are cold, it is easier to tell if they have gotten onto the eye. It is useful to have a friend or relative watch occasionally to make sure that the drops are going where they should.
The bottle tip should never physically contact the eye. Not only is there danger of contamination, but contact also stimulated blinking, lid squeezing and reflex tearing, all of which dilute the drug and pump it away from the eye.
Many patients rely on someone else to instill their drops. Many others take their own drops with difficulty. Problems include difficulty breaking the bottle top seal, raising the arms, tilting the head, holding and squeezing the bottle, directing the bottle, fear of hitting the eye (leading to the bottle being held too high), involuntary blinking and poor sighting of the bottle tip. Severe physical difficulties may be presented by arthritis or a tremor, as in Parkinson's disease. Squeezing too hard on the bottle to expel a drop can lead to an increased hand tremor or a spurt of drops.
FACTORS ASSOCIATED WITH NONCOMPLIANCE
There are many reasons behind poor compliance. Most of the factors can be grouped under the following headings: the patient, the disease, the regimen, and the doctor-patient relationship.
The patient
None of the common demographic factors such as age, marital status, living alone, sex, race, income, occupation, fear of blindness, number of dependents, visual acuity, reading ability, subjective assessment of visual ability, sense of self-esteem, intelligence, level of education and personality type has been shown consistently to be related to noncompliance. Factors which do appear to correlate include frequently missing appointments, an unstable home or family situation, dissatisfaction with the treatment, and a poor understanding of the disease and its treatment. Greater understanding of glaucoma by the patient, including how it is related to levels of intraocular pressure, knowing that glaucoma can cause blindness, and that regular drop instillation could prevent blindness, all lead to better compliance and a better result of treatment.
Lack of concern about one's health in general and, more specifically, thinking that glaucoma does not pose a threat to one's well-being or that the treatment is not going to help, contribute to defaulting. With glaucoma, the patient's viewpoint can significantly affect the results of treatment.
The disease
Diseases that produce severe symptoms or disability are associated with improved compliance. Chronic glaucoma fosters noncompliance, since visual loss is often not noticed by the patient until the disease is well-advanced. Patients with glaucoma may need life-long, costly treatment and supervision, with no subjective improvement.
Patients often do not understand and cannot remember what they have been told, particularly if detailed information is provided immediately after a diagnosis has been made. Such a situation may engender a shock-like state during which little if anything is mentally and emotionally absorbed and digested. Material presented may be conceptually too complex for the medically uninitiated, and may be couched in language which is too difficult.
The medical regimen
Poor compliance correlates with increased regimen complexity: a greater number of drugs, required to be taken more frequently, with further life-style disruption. More side effects, particularly those which are alarming or unexpected, provoke defaulting. Duration of treatment has also been emphasized. While patients may be willing to take drugs for a limited period, when therapy has to be extended indefinitely, defaulting becomes more common.
The doctor-patient relationship
Perception of the physician as warm, caring, friendly, accessible, active and thorough encourages compliance. Poor communication between the patient and the physician's team or a doctor's apparent lack of concern, can lead to the opposite. Long waiting times to obtain an appointment and long waiting times to be served at the pharmacy may also contribute to subsequent noncompliance.
No matter how well doctors think they know a patient, their judgments about compliance are often inaccurate. Physicians often automatically assume that patients are compliant. When noncompliance is discovered, the patient is blamed, sometimes with anger and rejection. Rather, it should be recognized that the management situation is inadequate in meeting that patient's needs.
Special problems in the very elderly
Elderly patients face particular problems. They are more likely to be treated for multiple disorders, creating a greater chance of side effects and drug interactions. Older patients are less able to recognize these reactions and separate them from other diseases. Poor hearing and diminished cognitive abilities may compound communication difficulties and reduce understanding of what treatment is required, and why.
Very elderly patients also have profound physical changes, including decreased lean body mass, decreased cardiac output, and decreased blood flow to the liver and kidney, which metabolize and excrete drugs. Drug concentrations are more likely to build up, leading to cumulative overdosage. Many elderly patients may alter their drug intake intentionally, partly at least to reduce side effects.
Falls are a major threat to the elderly and visual deficits aggravate this. Hip fracture risk is 50% greater with moderately impaired visual acuity, and 120% greater with very poor vision. In one study, nearly 10% of patients over age 65 had suffered a major fall in the previous 12 months.
STRATEGIES TO ENHANCE COMPLIANCE
Patients who understand the therapeutically relevant concepts of a disease are more compliant and have realistic expectations of the clinician and the management strategies.
Minimize the treatment regimen
Use the least number of drugs, at the lowest concentrations, the fewest number of times necessary. Because intraocular pressures can fluctuate widely throughout the day, new drugs should be started one at a time and to only one eye if possible. After the drug has been started, pressures should be measured in both eyes so that the physician can compare the effect of the drug on the treated eye with the untreated eye to assess effectiveness and side effects. If one drug is ineffective, substitute another drug for it before adding drugs and forcing the patient to take multiple medications. Record the time the pressure was taken and the time of the last medication, so that when treatment is being changed, the pressures can be taken on the new medication at the same time of day as it was taken on the old medication.
Minimize inconvenience
Introduce the concept of 24-hour control. Try to fit the regimen into the patient's life-style. Determine the patient's daily routine, such as times for waking, morning break, lunch, return from work, evening meal, bedtime) and link this to the desired instillation schedule. If pilocarpine precludes driving, it may be acceptable to instill the drops after getting to work, and once back at home. In one study, these approaches reduced the frequency of missed and mistimed pilocarpine drops by 50%.
Predict likely side effects
Nothing reinforces patient confidence as much as accurate prediction of effects and side effects. Patients are usually grateful to be made aware in advance of what to expect. Allergies to topical medications are often reactions to the preservatives. If patients understand this, they will be more willing to try alternatives.
Who has the time?
All these suggestions require time. Many physicians do not have the resources to cover and regularly reiterate all these factors with all their glaucoma patients, especially under managed care. Trained staff can assist, especially if the patient perceives the effort as one that is co-ordinated by a concerned and involved clinician. Illustrated, informative pamphlets and booklets, audio tape and/or video tape presentations can be used by patients with relatives and friends in a relaxed setting, and should be re-exhibited intermittently or regularly as the patient may require. Expect to repeat much of this information on many occasions as the years of treatment unfold.
Community support groups play an important role. A number of organizations produce regular newsletters, run support group meetings, provide educational booklets and specific information sheets for glaucoma patients and their families, as well as enhancing public knowledge of the need for regular ophthalmic examinations as well as raising funds for glaucoma research. A booklet has been suggested for each patient containing the medication schedule, a record of the doses and the times they are needed, and listing all the treatments (systemic as well as topical) and all involved doctors. Patients are invited to document their problems, including inconveniences and side effects.
Use compliance aids
To encourage open communication with patients, try to reduce their anxiety about difficulties with the treatment program. Make them aware of compliance aids such as instillation frames and some eye drop brands with compliance caps.
Several styles of instillation frames are now available to assist in positioning the dropper bottle over the eye without tissue contact. The compliance cap contains a side window which displays a number. The patient turns the cap after each instillation to reveal the next drop number for that day's schedule.
For patients with memory difficulties, write the schedule out in large clear letters, identifying the bottles by description as well as name, e.g., "the bottle with the green or lilac top." For others with poor sight, use colored squares representing the bottle top color to reduce confusion. Large print labels around each bottle indicating the number of times to be taken daily can help the patient remember and also serve as a handle to facilitate drop instillation.