1) Ambiguous, Inconsistent & Unpredictable Symptoms
Despite visits to multiple physicians in a variety of subspecialties, answers and a diagnosis linking a wide range of initial symptoms (e.g., constant fatigue, joint pain, rash and photosensitivity) in the pre-diagnosis stage proved difficult to come by.
Even after a diagnosis of SLE, patients still experienced ambiguity associated with their symptoms, which could change within a patient over the course of the disease during flares affecting different organs. Variability in pain, fatigue and other symptoms affected employment and social engagements, and made an impact on an SLE patient’s ability to plan their days.
Additionally, symptoms may vary a great deal from patient to patient, meaning respondents had difficulty finding a common pattern of symptoms between themselves and others with SLE.
According to Mr. Leung, one strategy that emerged from the 2019 Lupus meeting from the Duke University Lupus Clinic is to use a simple subclassification to categorize patients’ clinical symptoms.
“Type 1 symptoms refer to the standard things rheumatologists are concerned with, such as inflammation, damage, activity and organ involvement,” Mr. Leung says. “Type 2 symptoms refer to aspects of lupus that are usually of primary concern to the patient, such as fatigue, bodywide pain, sleep deprivation and depression. Medication typically only addresses type 1 symptoms.”
Using these classifications can improve physician-patient communication because it acknowledges that patients’ type 1 lupus and type 2 lupus symptoms can change independently.
2) Poor Communication
Respondents struggled with their healthcare providers’ lack of knowledge and misconceptions about SLE and expressed the need for more information about SLE from these health professionals. They also expressed general confusion about some aspects of their disease. They mentioned wanting their rheumatologists to fulfill the role of providing this information, and they also wanted these professionals to do a better job of listening to patient questions and concerns. Some felt their rheumatologists had preconceived notions (based on other patients or medical texts) of how their symptoms were supposed to present rather than accepting what their patients were telling them about their symptoms.
“We all need social support, regardless of presence of disease,” Mr. Leung says. “With lupus, what may be going on is that specific aspects of the disease, namely the variability and inconsistency of symptoms, prevent patients from maintaining sources of social support. Part of this maintenance is done through communication with friends, family and physicians. But when specific aspects of lupus prevent patients from effectively communicating, those sources of social support begin to erode.”