NYC Voices Medication Survey: Preliminary Results
(Column: Ask the Doctor)
Several months ago, NYC Voices ran a questionnaire asking readers a long series of questions about their experiences with their illnesses, their medications and their doctors. I volunteered to "analyze" the data, looking for areas where we might be able to use the information to understand more about our readers, their illnesses, and the medications and physicians who treat them.
Over 100 of you responded to the survey, with many of you attaching notes to your questionnaires, or writing comments to elaborate on your answers on the forms themselves. Most of you answered all the questions, others left some out, and some were (hey, it's not only doctors who sometimes have illegible handwriting!!) simply unreadable. Since they were anonymous, we couldn't go back and ask you each for clarifications.
When I originally volunteered to review and write about your responses, I honestly didn't realize quite how complex a task I'd agreed to. The forms included xx questions, with some being fill-ins, some rating scales, some true-false. Once I got the answers and entered them into my computer, it became clearer how hard it was going to be to figure out what, in the aggregate, your answers mean. Therefore, in this column, I'll give an overview of what you reported, and describe some interesting findings. As (with the help of a statistician) I do a more complicated analysis, I'll report in a later column some of the "deeper" findings…..if I can find them!!
Almost an equal number of men and women responded. Your ages ranged from 21-64, with an average of 46. Roughly half of you reported schizophrenia as your diagnosis, with about a quarter listing bipolar disorder and about 15% listing depression. Not surprisingly, therefore, the overwhelming majority of you are taking antipsychotic medication, both newer atypicals and older neuroleptics.
Most of you are taking more than one medication, with second antipsychotics and mood stabilizers the most common second prescriptions. A surprisingly high percent of you are taking as many as four or more psychiatric medications at the same time. On average, you have been taking these medications for over seven years, with about a quarter of you reporting being on meds for ten or more years.
When asked to rate how satisfied you are with the medications you're taking, you rated them as 4 on a five point scale where 5 equaled happiest. Most of you have been hospitalized, with the large majority being discharged more than three years ago, though about a quarter of you have been hospitalized within the past year.
The next series of questions related to your psychiatrist and his or her relationship with you. Most of you rated your psychiatrist as a "4" on a five-point scale in terms of how helpful you find him/her in dealing with your medication issues. Unexpectedly, you rated your psychiatrists just as highly on how well they deal with you as a person, a finding contrary to many people's perceptions of how psychiatrists behave.
Only six percent of you thought your doctors wouldn't change your medications if you wanted, and more of you described the relationship as "we're a team" than in any other category. Unfortunately, you rated your docs as less accessible than helpful. You report that your docs are about equally available in person and by phone; though only four of you said you could reach your physicians by both phone and in person.
Somewhat more than half of you have gone off your medications completely, though most of you report having done so only once or twice, rarely more often. In fact, the large majority of you reported that you take your medication exactly as prescribed. I must confess that, a clinician who has worked with many, many people with schizophrenia and other serious psychiatric disorders, I find this quite out of line with my own clinical experience. Almost no people take their medications exactly as prescribed. Your responses to this question make me wonder about other answers. Are you telling us what you think we want to hear? Are you, the respondents, typical of individuals with serious mental illness?
As I said when I began this column, figuring out what is "really" going on in your responses to this survey is going to be a complicated task. I hope that this issue's column whet your appetites for what I hope will be a more sophisticated analysis in a future issue. There, I will attempt to examine issues like: "Does diagnosis have any relationship to how accessible people find their psychiatrists?" or "Is there a relationship between what medications people are taking and how happy they are with their medication?"