2018 Gina M. Finzi Memorial Student Fellow
The Regents of the University of California
Project: Measuring Resilience as a Key Psychosocial Indicator for Women with Systemic Lupus Erythematosus
Mentor: Perry Nicassio, PhD
About the Researcher:
Alanna Hirz is a doctoral candidate at UCLA Fielding School of Public Health. As a public health researcher, she brings a unique perspective to lupus research with a focus on how social determinants of health contribute to reproductive health disparities among lupus patients. Her dissertation research addresses how women with lupus make decisions about pregnancy, what matters to them when making pregnancy decisions, and who women involve in their decision-making process.
Summary from Hirz’s Research Proposal
We developed the Rheumatic Disease Resilience Scale: Lupus Version (RDRS-L) to measure resilience in SLE patients. Future adoption of the RDRS-L may benefit clinical practice, as well as promote the shift towards the use of positive psychosocial indicators for evaluating SLE outcomes. Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that is characterized by unpredictable flares of disease activity which can range from mild to life-threatening. Though factors such as depression and anxiety play an important role in SLE disease outcomes, they are often inadequately addressed during routine rheumatology visits. Further, while SLE patients can be negatively impacted on multiple psychosocial dimensions, not all SLE patients are limited by their SLE experience, and some continue to function meaningfully in their day-to-day lives in spite of their SLE. Maintaining meaningful functioning in the face of illness has been characterized as resilience and can be seen as a form of adaptive coping. Further, fostering resilience as an adjunct treatment to clinical disease management has been shown to help manage physical manifestations of disease in other chronic illnesses. To measure resilience, reliable disease-specific instruments are essential. A strength of the RDRS-L is it addresses how individuals cope with negative emotions as well as adapt to adversity, both of which are predictive of disease outcomes in SLE patients. We conducted a pilot study addressing two aims: 1) to evaluate the reliability and validity of the RDRS-L; and 2) to characterize resilience in a sample of reproductive-aged and pregnant women who have been diagnosed with SLE. We recruited a diverse group of women (n = 33) aged 18-45 who are diagnosed with SLE from a private rheumatology clinic in the greater Los Angeles area. Preliminary study results show the RDRS-L has good reliability and validity warranting larger scale validity testing.
For more information on Lupus Foundation on America’s granted research, please contact Ashley Marion at [email protected]