There’s an old expression, “Nobody cares what his camel thinks till it dies in the middle of the Sahara.” Uncomplaining, a camel is supposed to deliver its passenger to the next oasis with little food, water or attention. But wouldn’t a savvy nomad invest a little effort in making sure his camel was at least healthy, if not happy? As doctors, how often do we prescribe medications to patients, treating them like a camel and expecting them to endure a long journey of compliance while spending little or no effort to assess their well-being along the way? With glaucoma medications, we care mostly about adherence to the regimen and pressure-lowering efficacy, often labeling as “noncompliant” the patient who doesn’t follow our directions. Instead of actively eliciting patient feedback on their drops, we assume “no news is good news,” and like many primary care physicians, we underestimate how often topical therapy can cause very real systemic side effects.
Why are we so callous? For most who treat large numbers of glaucoma patients, it’s simply too time consuming to query every patient about their experience, probing the possible pitfalls of the specific drugs he or she takes and listening to stories of aches and pains that are most likely unrelated. It’s easier to move on to the next patient.
What’s the consequence of not asking? Recently, my glaucoma specialist partner, Sev Teymoorian, saw a patient named Paul who has taken timolol 0.5% drops for the past 6 years, maintaining excellent pressure control. What my partner didn’t know was that 5 years ago, Paul was also prescribed an antidepressant because he had lost the will to get out of bed and go for his morning walk with his wife. He stopped gardening and had put on weight. He felt sad most of the time. Paul never reported his timolol to his primary care physician, and he never told my partner about his depression. He quietly endured a 5-year journey of darkness as every faithful camel should.
Paul’s depression and its relationship to timolol was discovered by a questionnaire routinely administered by MDbackline, a cloud-based software that interfaces with EHR and automatically queries patients who take glaucoma drops about their satisfaction with treatment, side effects, compliance, cost at the pharmacy and interest in surgical options. It instructs patients in the proper way to take drops and offers learning material on surgical options like selective laser trabeculoplasty and MIGS.
Patient responses from MDbackline’s glaucoma module are categorized with a green, yellow or red flag, according to how well the patient is doing, and staff members can review and file most of them with a single click that is documented in EHR. Naturally, the care of the few patients with red flags, like Paul, are escalated and managed appropriately.
With data now on thousands of glaucoma patients’ responses, we’ve learned many lessons about what our patients think. On a recent review of 1,200 patients by my fabulous summer intern, CJ Writer, overall, 93% are satisfied with their treatment, with latanoprost and timolol correlated with the highest patient satisfaction. Cost was a leading driver of satisfaction, with the generic drops latanoprost, timolol and timolol/dorzolamide being least expensive. Another patient favorite was the perception that a bottle of drops contained enough drug to easily last a month. Side effect frequency was another, although curiously timolol had more patients reporting zero side effects than almost any other drug. This means that either timolol patients in this population (suburban, white) don’t experience as much beta-blocker side effects as we thought or maybe they’re not bothered by them.
There are dozens of other learnings in our glaucoma patient-reported data, and CJ, Sev and I will be publishing them in the near future. Meanwhile, we are learning to act more like doctors than like uneducated desert nomads. We are discovering more patients like Paul, who needs and deserves our extra effort to find treatments that control his disease while respecting his life.
Disclosure: Hovanesian reports he works as a consultant with a number of companies that produce eye drops for glaucoma and is the founder of MDbackline Inc.