Last month, I told you how my handy DAS-ometer has given me a new, and standardized, look at RA. This month, I want to share my first experience with a new metric: the Health Assessment Questionnaire or HAQ.
For my first patient to get HAQed, I wanted to choose one carefully, especially in a teaching clinic where I could show the added value of a patient-reported outcome. I did not want to be disappointed in my first outing and, like my colleague who wanted to stick a fork in the Disease Activity Score (DAS), join the utensil brigade and stick a fork in the HAQ.
Enter the Subject
A few weeks ago, one of the house officers rotating on service came to me in my clinic office, a small room with an examining table and a desk with a computer for the EMR. He succinctly presented his case, a particularly challenging therapeutic decision. The patient was in his 50s and had had RA for five years. The DAS was 3-something, but the man was struggling, feeling unable to perform the tasks required of him on his job. In today’s parlance, he had minimal disease activity. In my mind, a biological could be of value for him and I wanted to do an HAQ to help me decide.
I do not keep paper HAQs in my clinic and instead have a small handheld computer. This silvery little box is a combined DASometer and HAQometer but, unfortunately, the screen is small and the letters are composed of broken lines that make the words hard to see. I decided therefore to read the questions to the patient and punch in the responses myself. In that way, I would participate in the process and, as we went through the questions, the house officer would learn the array of activities queried to assess functionality.
The house officer, a snappy young man aspiring to be a cath jockey, joined me in the examining room with the patient. The patient had a serious, almost worried, expression but his fingers looked straight and fine. When we shook hands, his grip was firm. We chatted briefly and I then did my joint exam, my DAS almost the same as the house officer’s. I then explained the HAQ to the patient and the rationale for the questions.
“These questions tell us precisely about your function and, in that way, we can determine whether you need more treatment.”
The man nodded and I asked the first question, “Can you dress yourself?” I gave the man the choice of no difficulty, some difficulty, much difficulty, or unable to do.
“No difficulty,” he answered right away. I hit the little button with a sharp jab.
I then asked the next question, “Can you shampoo your hair?” I was staring at the computer screen of my handheld gizmo, ready to push one of the little buttons. I realized 20 questions was a lot and that time was passing.
There was a long pause and the patient was silent. I was surprised by the delay since the answer should not have been hard. My finger was itchy. I was ready to go on.
“I don’t know how to answer this question, Doc.” The patient said and I looked at his face. His mouth had narrowed and he had a querulous expression.
I was about to repeat the question when I finally registered the appearance of the man’s head. He was totally bald. There was not a hair in sight. His scalp—smooth as a billiard ball—shined brilliantly in the harsh white light of the examining room.
It was clear that, in fixating on the man’s hands, I hadn’t paid attention to the rest of him, missing the most obvious feature of his appearance.
I was deflated and embarrassed and mumbled something like, “You know what I mean. If you wash your head, do you have trouble?”
“No,” he said, his word clipped.
I plowed through rest of the questions and let the calculator do its magic. As it turned out, the man’s HAQ was actually low, his perception of his functioning in fact worse than the reality. After explaining the alternatives to the man, he decided to stay on just methotrexate alone.
After the visit was over, the house officer expressed appreciation for the teaching and admiration for rheumatology’s focus on the patient’s life. I doubt these feelings are sufficient for this fine chap, destined for a life swathed in lead, to reconsider his career path. How could 20 questions match the sophistication of giant machines that create images of surpassing clarity with showers of X-rays and magnetic atomic flips?
Lessons Learned
While I feel chastened by my first use of the HAQ, I am not deterred. I have learned old lessons and some new ones. First lesson: Keep your eye on the ball. Look at the whole patient. Computer screens are fine but they are no substitute for the old standbys built on the senses: inspection, palpation, and auscultation. Olfaction is another one. I once had an attending who insisted we smell the patient’s breath so we could pick up the telltale scents of uremia and infection. Having smelled terrible things emanating from the mouths of patients, I don’t recommend this approach even if it occasionally gives a nifty clue for diagnosis.
The second lesson I learned is that patient-reported outcomes must be tweaked and tuned for each and every individual. I commend Jim Fries, MD, and all the other contributors to the Patient-Reported Outcomes Measurement Information System initiative. These investigators are taking insights from educational testing and creating elaborate decision trees to assess patient outcomes with detail and precision. I cannot help but think of how such a tree could be constructed for the patient that I saw. “Do you have a full head of hair? If no, are you bald? If yes, do you want to look like Kojak? If yes, can you shave your skull?”
People are different and outcome measures need to capture all of this wonderful variety.
Finally, I learned a lesson that is akin to one that was drilled into me when I was in grade school and high school. During that time, I took hundreds if not thousands of exams, and before each and every one, the teacher said, “Read each question carefully before you answer it.”
In my first administration of the HAQ that day in clinic, I learned an equally important corollary: “Read each question carefully before you ask it.”
Dr. Pisetsky is physician editor of The Rheumatologist and professor of medicine and immunology at Duke University Medical Center in Durham, N.C.