Lupus Foundation launched a new evidence-based online self-management education program for lupus patients

The Lupus Foundation of America is an organization for providing awareness and treatment facilities for patients with lupus disease. Recently they have launched a new evidence-based, online self-management education programs for the patients with lupus. Here they learn to self-management of the disease that will enhance their skills, treatment adherence, communication ability with physicians and improves the quality of life.

The Lupus Foundation of America is the national foundation for treating the conditions with lupus, which is one of the most devasting and unpredictable diseases of the world. It gives care and support to the patients. By carrying out complete research and education it improves the quality of life for the people with the disease through management.

According to the report published today in WASHINGTON the studies related to this online management system present this week to the American College of Rheumatology (ACR) at the Annual Scientific Meeting in Atlanta. The Center for Disease Control and Prevention supports the online self-management education program under the agreement number NU58 DP006139.

“Development and Usability Testing of taking Charge: An Email Series to Increase Knowledge of Self-Management Skills in People with Lupus” is the first study in this regard. it involves a small group of people say 13 with the Lupus disease, who provide feedback at the initial stage of taking charge. The email series is developed to give education to the people with lupus disease about the newly formed skills for helping them to manage the disease.

Lupus Foundation of America developed an email series take charge of educating the newly diagnosed people with lupus that increase their knowledge regarding self-management skills. The email was distributed weekly for the six weeks to includes the educational information related to symptoms management skills. During the feedback, the groups were asked if they get tried in self-management skills, 69% of people answered in “yes”.

Also read- What Causes Lupus Disease?

But the rest are using the information from the email and make questions for the doctors in their next appointments, which is a positive sign.

According to the Karin Tse, MPH, who is the senior research coordinator at the lupus foundation of America the email is a better approach for preparing the patients for doctors’ visits, detecting the lupus symptoms, defining and explaining the lupus disease to others. As in the delivery method is it easy to use as the format is directly sent to the inbox of the person. It empowers the persons with the disease to carry out their self-management a control their health.

At the meeting the second study was presented, “the Design and Development of an Online Intervention for Lupus Self-Management” based on the transtheoretical model of change. The study provides a better vision to the people to manage their disease through a customized and comprehensive online program

An evidenced-based online program called as strategies to embrace living with lupus fearlessly was launched. SELF-helping the lupus patients in the four’s ways: manage their symptoms, control stress, take medicines and cooperate with the health care team.

This is based on the transtheoretical model of behavior (TTM) involving a healthy learning behavior through process change and strategies. Five individuals with lupus disease were employed as program tester.

According to Patricia Davidson, the VP of the Lupus Foundation of America, the TTM model used for chronic disease with greater success and it also work better for lupus self-management. It engaged the participants with the content according to their pace. Preparations are under process to test the acceptability and possibility among the wide group of people with lupus disease.

The participant focused on the four’s behaviors for complete assessment and then select the one key. The participant also receives email through sign in and text messages for better recovery and management. He can spend time on the program may be from 10 mins to one hour or more. SELF is available on the phone, tab, and computer. After 90 days program gives a complete assessment and printed report is delivered to the patient. The report contains data on the symptoms, change in condition, and self-management behavior.

To read the latest tweets about the research during the ACR meeting, visit their twitter handle for the latest newsfeed.




The author is a Medical Microbiologist and healthcare writer. She is a post-graduate of Medical Microbiology and Immunology. She covers all content on health and wellness including weight loss, nutrition, and general health. Twitter @Areeba94789300

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