How to Empower Lupus Patients Through Social Media & Online Resources

For the past few months, LupusChat has worked with the Alliance as patient partners to provide feedback, assist with literature reviews and contribute to the development and dissemination of the COVID-19 Patient Experience Survey. With backgrounds in science, Ms. Harrison and Ms. Felix have participated in the Alliance’s Patient Research Team. Ms. Harrison served as a co-author on its recent article about hydroxychloroquine and the role of the rheumatologist in the advent of COVID-19.³

Staying Informed

Disseminating education for patients, as well as providers is important beyond the current pandemic to reduce disparities and improve outcomes among people with lupus, according to the ACR’s Lupus Initiative.

Several important teaching resources for rheumatologists are offered through the Initiative, such as lupus signs and symptoms, and treatment options, and can be shared within the healthcare community to improve diagnosis and treatment, and decrease missed and misdiagnoses. Rheumatologists can also share initiative resources, such as information on self-care, with their patients to encourage them to take an active role in their disease management.

References

1. Figueiredo-Braga M, Cornaby C, Cortez A, et al. Depression and anxiety in systemic lupus erythematosus: The crosstalk between immunological, clinical and psychosocial factors. Medicine (Baltimore). 2018 Jul;97(28):e11376.
2. Li X, He L, Wang J, Wang M. Illness uncertainty, social support, and coping mode in hospitalized patients with systemic lupus erythematosus in a hospital in Shaanxi, China. PLoS ONE. 2019 Feb;14(2): e0211313.
3. Graef ER, Liew JW, Simard JF, et al. Festina lente: Hydroxychloroquine, COVID-19 and the role of the rheumatologist. Ann Rheum Dis 2020 Jun;79(6):734–736.