9 August 2023
The fallout when dermatologists and patients don’t agree
Four in 10 dermatology patients rate their skin condition as much worse than their doctor does, research reveals.
Dermatology patients’ quality of life suffers when doctors disagree about the severity of their illness, according to research that found more than 40% of patients view their skin condition as much worse than their doctor does.
A leading Australian dermatologist said the study highlighted the importance of clinicians treating the whole patient and not just their skin.
“Skin disease is unique in that it comes with a plethora of psychological, social and psychosexual impacts that are often not visible,” said Dr John Frew, staff specialist dermatologist at Sydney’s Liverpool Hospital and a senior lecturer at the University of NSW.
The research, published in JAMA Dermatology, was based on a survey of more than 1000 Singapore patients with eczema or psoriasis and 44 physicians found that almost half of all consultations were “discordant”.
The researchers asked patients and doctors to rate the severity of the patients’ disease on a scale of zero to 10 during consultations at three outpatient tertiary dermatological centres.
They defined “positive discordance” when patients rated the disease as more than two points worse than their doctor had.
The researchers found that just over half the patients rated the severity of their disease as about the same as the doctor.
But 42% of patients rated the severity at least two points higher than their doctor did, while only about 4% of patients rated their disease severity as lower.
“Although the present study was limited to dermatology patients with eczema and psoriasis and may not generalise to other patients, we believe that these results may be relevant in many diseases, especially when the functional and emotional burden of disease outweighs the clinical signs,” the authors wrote.
“A high symptom burden has multifactorial origins, with objective severity being only one. While physicians may view such patients as being not more ill, patients may view themselves as having worse health and being more disabled.
“Focusing only on the biomedical aspects (e.g., further diagnostic investigation or escalation of treatment) to resolve this discordance could lead to unnecessary costs and adverse effects.”
Dr Frew told Dermatology Republic that certain sites of disease activity like the face, hands and genitals could have disproportionate impacts compared to their surface area, and this was an important consideration.
“As the JAMA study demonstrates it is much more likely for physicians to underestimate the severity of the disease compared to patients,” he said.
“Therefore when we treat patients, it’s not just about treating the EASI or the PASI score – it’s about testing the whole patient.”
Dr Frew said there would be instances where Medicare access to therapy would benefit patients if consideration of the Dermatology life Quality Index score was taken into account in psoriasis.
“This is now done for advanced therapies in eczema (Dupixent and Rinvoq) and should be promoted in order to optimise patient care,” he said.
In an accompanying editorial in JAMA Dermatology, two US authors noted that zero to 10 numeric rating scale had not been extensively validated and could perform differently between patients and clinicians.
“It is possible that clinicians, having seen a wider range of disease severity, might tend to rate disease lower on this scale, which could explain why patients often rated their disease as more severe than clinicians,” they wrote.
They said the study added to the growing literature about the value of collecting patient-reported outcomes to understand their lived experience of skin disease, which may not align with what physicians expect based on objective severity.
They also said it highlighted the importance of considering patient-reported outcomes in clinical trials.
“However, patient- reported outcomes are not consistently included in clinical trials,” they wrote.
“For instance, only half of acne and rosacea trials include a patient-reported outcome, and to our knowledge there has not been growth in the use of patient-reported outcomes during the past decade.”
The editorial authors said one randomised clinical trial found that atopic dermatitis patients who received standard care plus cognitive behavioural therapy had greater improvements in stress, depression, patient-oriented eczema measure scores and itch intensity compared with those who had standard care only.
They noted that only half of acne and rosacea trials included a patient-reported outcome.
