While the laboratory results may say one thing, patients often experience another when it comes to their condition. But experts say simply being aware of this misalignment can do wonders for the therapeutic relationship. A growing number of research papers about patient reported outcomes belies an increasing recognition of the importance of the subjective patient […]
While the laboratory results may say one thing, patients often experience another when it comes to their condition. But experts say simply being aware of this misalignment can do wonders for the therapeutic relationship.
A growing number of research papers about patient reported outcomes belies an increasing recognition of the importance of the subjective patient experience in rheumatologic conditions.
Some studies, such as an Austrian paper published in 2012, found that while pain was the “single most important determinant of the patient’s perception” of their rheumatoid arthritis, the clinician’s perspective was driven by joint swelling.
The treating clinician’s tendency to prioritise blood tests and imaging can have pitfalls.
“Even if the clinician is right, the fact that the patient doesn’t buy it is an issue,” Peter Everett, a Melbourne researcher whose work focuses on patient reported outcomes and experiences in rheumatology and primary care, said.
“When you look at drivers of adherence, one of the most powerful factors behind adherence is trust in the doctor and the relationship with the doctor,” he said.
Patient-reported outcomes were tied into ensuring patients were literate and empowered, he said.
“It’s all about building quality conversations.”
Dr Kathryn Gibson, conjoint Associate Professor of Rheumatology at Liverpool Hospital, said she found patient-reported outcome questionnaires valuable in her own practice.
“They are very useful for measuring concepts which are best known to the patient. For things like pain, only the patient can tell you what their experience is.
“The same goes for fatigue, functional disability and social participation for example, which are all things that only a patient can truly tell you,” Dr Gibson said.
It might surprise a lot of clinicians to think that these measures could be robust and reliable, she said.
“But there’s ample data that says that measures of physical function in rheumatoid arthritis correlate with mortality, for example.”
Incorporating these types of questionnaires into the consult also allowed patients and doctors to quantify changes over time in response to treatment, Dr Gibson said.
While there were some limitations of this type of assessment, and they were not a substitute for a thorough history and examination, Dr Gibson said they were an “additional tool in the toolbox”.
It was also important for clinicians to choose the right type of patient-reported outcome or questionnaire for their patients and their practice.
How literate one’s patients were, the language they spoke, and the extent to which the tool had been validated, would all play into a clinician’s decision about which ones to use, she said.
