Visual measure of illness perception paints a picture of quality of life

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Visual measure of illness perception paints a picture of quality of life

Simple drawing predicts lung disease patients' mental outlook

Asking patients with chronic lung illnesses to paint a picture, of sorts, that shows how they perceive the extent of their lung disease can tell clinicians as much about their symptom-related quality of life as pulmonary test results, a new study suggests.

In current practice, patients answer a series of questionnaires - subjective self-reported data - that's combined with objective lung function and exercise test results to help clinicians gauge patients' mental outlook on living with a difficult illness.

For the study, researchers added a visual element, providing patients a simple outline of the human lungs and asking them to color in the proportion of their own lungs that they perceived to be diseased.

Statistical analysis showed that patients' visual perceptions of illness were equally effective as standard questionnaires and test results in conveying the symptom-related quality of patients' lives - and provided additional predictive value when combined with both verbal assessments and test results.

"What has always been fascinating to me about working with medical patients is that the objective numbers absolutely do not tell the whole story," said lead study author Charles Emery, professor emeritus of psychology at The Ohio State University.

"The broad construct here is illness perception, which becomes especially important for people who have terminal illnesses or chronic illness. If you have less control over quantity of life because of the terminal nature of your illness, then quality of life becomes that much more important. And one important factor linked to quality of life is illness perceptions - essentially, the broad cognitive mental model of your illness," he said.

"Illness perception is an avenue through which patients can talk about how they view their illness and consider alternate perspectives that enhance quality of life, even in the face of a terminal illness."

The study is published in the May issue of the Journal of Cardiopulmonary Rehabilitation and Prevention.

The 40 patients between ages 32 and 85 who participated in the study had been diagnosed with interstitial lung disease, which encompasses over 200 pulmonary diseases characterized by shortness of breath, low blood oxygen, chronic coughing, and varying degrees of inflammation and lung tissue stiffening. The average survival among patients with a new diagnosis ranges from about four to seven years.

Emery witnessed the effect of lung disease on quality of life early in his faculty career when a physician colleague described two patients with the same pulmonary function very differently: "One was waltzing into the office seeming fine, and the other was dragging themselves in," he recalled.

"That is linked to quality of life, and it's linked to perception," said Emery, also professor emeritus of internal medicine in Ohio State's College of Medicine. "Perception has so many consequences in terms of how you approach an illness and whether you see it as a problem to be solved that you take on as a challenge or you think, 'life is out to get me, so why bother?'"

While earlier studies of visualized illness perception have asked patients to draw free-form pictures of the affected part of their body, Emery and colleagues used a standardized image of the lung to allow them to quantify each patient's perception of the lung disease.

On average, participants perceived about a fifth of their overall lung volume to be affected by disease, with depictions of disease involvement ranging from zero to 73%.

Questionnaires that these patients routinely answer assess symptoms, especially cough and shortness of breath; symptom impact on the ability to carry out daily activities; and perceptions of how long the illness will last and treatment effectiveness. They are combined with results of spirometric testing of pulmonary function and a six-minute walk test of exercise capacity.

Statistical analysis and modeling of the data showed that lung function test results and self-reported illness perception - whether described verbally or visually - were equally predictive of illness-related quality of life.

"If you're seeing a patient and want to assess this person's quality of life, you can get an idea by looking at pulmonary function, but the data show you're getting important additional information by asking them questions about illness perception," Emery said. "Self-report is probably the most reliable way of understanding a patient's quality of life because, ultimately, they're the ones who are determining it."

Emery noted that the questionnaires are reliable and effective, but that they may not capture the full picture from people who have limited language abilities or don't want to tell anyone, even a doctor or family member, how they feel about being sick.

Incorporating a visual measure of illness perception into medical exams could serve patients with a range of language limitations and help identify those who may benefit from psychological counseling, he said.

He also said this technique could apply to a wide range of diseases that affect specific organs, and that using computer graphics and machine-learning for data analysis could speed up computation of a visual illness perception measure during exams.

"One of our responsibilities in working with patients is to get as clear a read of that patient's experience as we can," Emery said. "And so you want a measure that you can give to a patient, and they can completely do it on their own, with no input from anyone else."

Co-authors of the study, all from Ohio State, included Ihsan Rodriguez, Nitin Bhatt, Vincent Esguerra and Alice Staaby.

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