Background/Purpose: Fatigue is one of the most frequent, debilitating and impactful symptoms for patients with Sjögren’s Disease (SjD), and one of the most challenging to measure. To date, there are no PROs fully capturing fatigue as experienced by patients in their daily lives.The purpose of this study was to define a new PRO for assessing fatigue and its impact on the quality of life of patients with SjD, based on lived experiences and their own definitions of fatigue.

Methods: Inspired by an essay written by a patient with SjD on the Sjögren’s Foundation website (1), a new fatigue questionnaire, including 15 distinct types of fatigue (basic, rebound, sudden, weather-related, molten lead phenomenon, tired-wired, flare-related, fatigue related to other physical causes, fatigue-related concentration impairment, stress/distress/anxiety/depression SDAD-related fatigue, not sleeping well fatigue, normal aging fatigue, chronic illness fatigue, fatigue from trying to keep up with family and friends without a chronic illness, and doctor fatigue) was created and administered to SjD patients. Correlations with ESSPRI, ESSDAI, clinical and laboratory parameters were analyzed.

Results: 90 consecutive patients (female 93.4%) fulfilling SjD ACR/EULAR 2016 criteria, mean age 57.1 years (range 21–82), completed the questionnaire. The most frequently reported types of fatigue were SDAD(88.9%), basic (86.7%), and rebound (86.7%), while the least reported was weather-related (60%). Among all types, the SDAD had the highest impact on quality of life (mean impact score 82.8%). Males more frequently reported SDAD (100%), doctor fatigue (100%), and not sleeping well (83.4%), while females reported rebound (89.3%), basic (88.1%), and SDAD (88.1%). Younger and older patients reported basic fatigue more frequently (85.7% and 100%, respectively), compared to middle-aged groups, reporting SDAD(36–59 years: 92.1%; 60–70 years: 87.5%). Rebound was the only type correlating with disease duration (r=0.22, p0.03). Although SDAD was the most frequently reported and impacting type, it did not significantly correlate with ESSPRI, whereas strong correlations were observed between ESSPRI and other types, particularly basic (r=0.54, p< 0.0001) and rebound (r=0.50, p< 0.0001). Certain types of fatigue strongly correlated with each other, such as basic and rebound (r=0.90, p< 0.0001), or specifically with other symptoms, such as flare-related and VASglobal pain (r=0.41, p< 0.0001). No correlations were observed with ESSDAI or lab parameters, except for the molten lead phenomenon with CRP (r=0.55, p0.007).

Conclusion: This novel SjD fatigue questionnaire captures aspects of real-life fatigue previously underrepresented in existing PROs, and reveals heterogeneity in patient experiences. These differences, along with the clustering of fatigue types and symptoms, underscore the importance of a fatigue-based patient profiling, with potential implications for pathophysiological understanding and personalized treatment. Ongoing efforts focus on validating the questionnaire, stratifying patients based on fatigue, and establishing its role as an outcome measure.1.https://sjogrens.org/blog/2019/13-types-of-sjogrens-fatigue

« Back to ACR Convergence 2025

ACR Meeting Abstracts - https://acrabstracts.org/abstract/understanding-fatigue-through-patients-eyes-development-of-a-novel-questionnaire-capturing-the-complexity-of-real-life-fatigue-in-sjogrens-disease/