Lupus may be a life changing experience. It may not only affect your physical and emotional health, but also affect your personal, social, professional and economic health. The way your lupus or its treatment affects your daily life uniquely may be only known to you. It is therefore important to recognize, communicate the effects of the disease or its treatment to your doctors. This enables them to give you the appropriate care you deserve.
Frequently patients with lupus and their family 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 bringing some of them/ 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 most priority items/ your doctor may know it already.
If doctors could communicate the expected benefits/harms of any proposed treatments for lupus to the patients in a language that is patient friendly and easily relatable, it may help patients take active role in their own management, decision making and thus take charge of their lupus. As a doctor myself who provides care for lupus patients, I understand the value of learning our patients language, and have worked closely with lupus patients to learn various ways in which lupus or its treatment impacts their daily lives using rigorous scientific research methods, in order to improve our patient, as well as doctor communication, about lupus in the setting of a limited time available during a routine doctor visit.
This work over the last ten years, has resulted in development of two survey tool called 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 many other countries and in various languages. This is the only such tool that was developed within the USA, from lupus patients of varied ethnicity and from both men and women with lupus. It has been published in various scientific journals and presented in numerous National and International Conferences. The tool has been tested and found to function well among patients of various countries, languages and culture.
You may use either of these surveys to follow your disease and treatment with your doctor, as well as to communicate your concerns to them.