Frequently patients with lupus find it difficult to communicate with their doctors. This may be because (a) your time with your doctor is limited, (b) you may sometimes forget to mention/may not know the best way to communicate these issues/ may be uncomfortable discussing some concerns/ may not be able to fit all your concerns in the time allotted/ may feel that though these are bothersome issues but either they are not the top priority items/ or assume that your doctor may know it already.
Doctors may be similarly challenged (for variety of reasons), and may not be able to ask you about different ways that lupus may be impacting your lives, even though they may very much want to.
If as doctors we could communicate the expected benefits/harms of any proposed lupus treatments to the patients in a patient friendly language, it may help our patients engage in their own health, decision making and taking charge of their lupus.
As a lupus doctor myself, I understand the value of developing a good patient physician relationship, in learning what is important to our lupus patients, and addressing the patient as a whole.
We have worked closely with lupus patients to identify various concerns (and their importance) that arise due to lupus or its treatment and impacts their daily lives. We have used rigorous scientific research methods, to develop survey tools to improve patient-doctor communication about lupus and its impact on daily lives. These tools are very useful to comprehensively, easily and efficiently evaluate wide variety of concerns that lupus patients may have in the setting of a limited time available during a doctor visit.
LupusPRO (PRO stands for patient reported outcomes), Lupus Impact Tracker (LIT) and Body Image Lupus Screen (BILS). These tools have been studied widely not only in the US, but also in other countries,in various languages by lupus patients and lupus doctors. This is the only such tool that was developed within the USA, from lupus patients of varied ethnicity and took feedback from both women and men with lupus. The tool uses a gender neutral language, and includes evaluation of both health related quality of life, as well as non health related quality of life aspects important and relevant for lupus patients.
For medical care providers we have also developed an easy to use SIMPLE Index tool as a surrogate for lupus disease activity evaluation. It involves patients responses to some questions, and only two lab tests (one blood and one urine test). Health care provider input is only needed to confirm attribution to lupus in case of abnormal labs. Requires minimal health care team time. Read more on subsequent pages about SIMPLE Index