A new study highlights some of the differences in perspective on disease management between people living with Parkinson’s disease and doctors treating them.
The study looks at non-motor symptoms, method of medication delivery, and awareness of support services as places where doctors’ and patients’ perceptions don’t line up, and suggests that getting these perceptions in better alignment could help improve treatment outcomes.
The process of treating Parkinson’s disease is complicated and works best when both patients and doctors are on the same page. When there is disconnect, treatment is more likely to be less than optimal, particularly in terms of patients’ quality of life.
To identify such areas of divergence in perspective, researchers developed a questionnaire, which they gave to physicians treating Parkinson’s patients. The physicians’ patients were given a separate questionnaire to complete.
In addition to gathering demographic and health data, the questionnaires included more subjective questions about treatment regimes. For example, both physicians and patients were asked about the effect of Parkinson’s on patients’ quality of life, and both groups were asked about patient satisfaction with medications. There were also questions about what a conversation between a physician and a patient might look like.
The questionnaire was sent to 107 physicians, 70 of whom responded and provided answers regarding 350 different patients. Additionally, 71 patient questionnaires were completed and collected. Of all these, there were 66 patients for whom both physician and patient questionnaires were completed, allowing for the most direct comparison.
There were many areas in which physicians and patients were in agreement. For example, both groups rated the efficacy and safety of a potential treatment as very important in selecting treatments, as would be expected.
Generally, patients and physicians also had similar perceptions on how Parkinson’s was affecting patients’ quality of life, even though physicians reported that this isn’t often formally assessed. The researchers noted that doing such assessments more often might further improve Parkinson’s treatment.
There were also some areas where patients and physicians reported significantly different views.
Patients rated the form of medication delivery (e.g. a pill versus an injection) as more important than physicians in deciding what the best treatment is.
Physicians reported spending more time during patient visits discussing motor symptoms (e.g. tremors, which they felt were most bothersome for most patients) than non-motor symptoms (e.g. depression and anxiety).
In contrast, patients reported a perception of a fairly even split.
“From a physician perspective, there was alignment between the motor symptoms that were most bothersome for patients and those that were most discussed … but disconnect between the most bothersome and most discussed non-motor symptoms (physicians felt fatigue was most bothersome for most patients … [and] cognitive impairment was the most discussed non-motor symptom…),” researchers said.
Finally, physicians tended to view their patients as more knowledgeable about Parkinson’s disease than did the patients themselves. This extended to physicians being much more aware of available support services than the patients.
Nonetheless, this study has numerous limitations, including its sample which, in addition to being small, probably isn’t representative of Parkinson’s patients in terms of age, education, disease status, etc. The study also focused only on patients in the United States, potentially limiting its ability to be generalized.
However, the investigators propose that getting patients and physicians on the same page about these issues could be clinically helpful.
“Non-motor symptoms, form of medication delivery, and awareness of support services are areas where physician and patient alignment could be increased to potentially improve patient outcomes,” they concluded.