Picture a scenario where you’re at a therapist’s office for the first time or after a long hiatus. You’re handed a questionnaire to fill out, designed to assess your symptoms or reasons for the visit. Now, envision that this form is so perplexing that you find yourself seeking help to understand the questions. This is not an uncommon experience, as a recent study from the University of Arizona highlights.
These types of questionnaires, like the Patient Health Questionnaire (PHQ), have been integral since the 1990s for assessing patient symptoms and guiding treatment plans. They are required by institutions such as the National Institutes of Health.
A study published in JAMA Psychiatry reveals that these forms often confuse patients, leading to inaccurate data that healthcare providers use for treatment planning. Zachary Cohen, the study’s lead author and a University of Arizona psychologist, pointed out the potential issues with these misunderstandings.
Cohen, who is an assistant professor in the Department of Psychology at University of Arizona, first noticed problems with the PHQ during his clinical training 14 years ago. He recalled patients frequently requesting clarification on how to answer its questions, with clinicians often advising them to simply “do your best.”
According to Cohen, this is not an ideal solution for either clinical practice or research. He leads the Personalized Treatment Lab, focusing on tailoring mental health treatments to individuals.
“This is the questionnaire that everyone fills out, and it’s a such a common experience of being confused – it’s potentially catastrophic,” Cohen stated. He emphasized the importance of accurate data, likening the current situation to “building a house of cards.”
Confusion Over Symptom Frequency
The research highlighted issues with the questionnaire’s instructions, particularly the wording concerning how often patients are “bothered by” symptoms like overeating, oversleeping, and restlessness. The study involved about 850 participants who were asked to complete a PHQ and then consider a hypothetical situation.
Participants imagined oversleeping every day for a week while on vacation, without being bothered by it. They needed to decide whether to respond with “not at all” since they weren’t bothered or “nearly every day” because it occurred daily.
Results showed inconsistent interpretations: only 38% of participants chose “not at all,” and just 17% would answer based on being “bothered by” symptoms in the future.
Cohen remarked, “If you’re using smartwatches to do passive sensing of sleep, and everybody is sleeping too much, but half of the people are saying that they sleep too much every day, and half of the people are saying not at all because they’re never bothered by it, then your passive sensing will look like noise when it’s not really.”
The findings suggest the test fails to accurately convey patient experiences. Cohen noted the importance of understanding symptoms of depression without mischaracterizing situations, such as intentional appetite reduction due to weight loss medication, as depression indicators.
Proposed Language Adjustments
Although the study is preliminary, Cohen believes changing the questionnaire’s language could have significant implications. He suggested clarifying whether questions are about symptom frequency or distress to improve accuracy.
“If I want to know how frequently people are oversleeping, then just change the wording of the instructions and make it very clear that I’m just asking about the frequency of oversleeping,” Cohen suggested. He added that further studies could confirm the effectiveness of such changes.
The study’s co-authors include Margarita Panayiotou from the University of Manchester, Josip Razum from the University of Iceland and the Ivo Pilar Institute of Social Sciences, Gudrun Eisele from KU Leuven, Shirley B. Wang from Yale University, and Eiko I. Fried from Leiden University.
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