Transcript
Sjögren’s disease is often recognized through dry eyes and dry mouth. But its impact extends well beyond these symptoms, with fatigue, pain, and systemic involvement affecting daily function and quality of life. Because early symptoms can be varied and nonspecific, patients may spend years seeking a diagnosis. So what does that delay mean for their long-term disease burden?
Welcome to AudioAbstracts on ReachMD. I’m Ryan Quigley, and today, I'll be reviewing a real-world U.S. survey published in ACR Open Rheumatology that explored the relationship between delayed diagnosis and disease burden in patients with Sjögren’s disease.
To explore this question, researchers analyzed a U.S. survey conducted in 2018. Eighty-four rheumatologists provided clinical data on 511 adults with primary Sjögren’s disease. Patients were also invited to complete questionnaires assessing symptoms, fatigue, quality of life, and work impairment.
The findings revealed a substantial disease burden. Based on physician-derived measures of systemic disease activity, 56 percent of patients had moderate or severe disease. Nearly three-quarters experienced physical fatigue, and a similar proportion had joint involvement.
Greater disease activity was also associated with poorer quality of life and work function. Average overall work impairment increased from 13 percent in patients with mild disease to nearly 39 percent in those with severe disease.
Now, turning to the diagnostic journey, the average time from symptom onset to diagnosis was 2.3 years. Among patients with available diagnostic-delay data, roughly one-third waited more than 12 months. Physicians frequently cited delays in diagnostic testing and specialist referrals as contributing factors. And those delays were associated with meaningful differences in patient outcomes.
Patients diagnosed more than a year after symptom onset reported poorer quality of life than those diagnosed within three months. On a 100-point self-rated health scale, average scores were approximately 66 versus 75, respectively. This difference remained statistically significant after adjusting for demographic characteristics and time since diagnosis.
Longer diagnostic delays were also linked to greater systemic disease activity. Patients diagnosed after more than 12 months had over twice the odds of at least moderate disease activity compared with those diagnosed within three months. The adjusted odds ratio was 2.34, with a 95 percent confidence interval of 1.16 to 4.72.
Other findings were less definitive. Patient-reported symptom burden and fatigue differed across diagnostic-delay groups. However, the adjusted comparisons between the shortest and longest delay groups weren't statistically significant. Work impairment also showed no significant association with diagnostic delay.
Treatment patterns highlighted the challenges of managing Sjögren’s disease. More than half of patients used over-the-counter therapies, while 52 percent received antimalarials and 38 percent received conventional disease-modifying antirheumatic drugs. Biologic therapies were used in just 12 percent.
Of course, these findings come with limitations. The study was cross-sectional, so it can't establish that diagnostic delays directly caused worse outcomes. Disease activity measures were derived from survey data, diagnostic timelines relied partly on retrospective reporting, and some patient-reported analyses involved smaller samples. The findings may also be less representative of patients who aren't receiving regular rheumatology care.
Still, the clinical implications are clear. Sjögren’s disease warrants attention beyond its classic dryness symptoms. Earlier recognition of systemic manifestations, more efficient diagnostic testing, and timely specialist referrals may help patients reach appropriate care sooner.
Ultimately, this study reinforces the importance of assessing both systemic disease activity and patient-reported burden, while highlighting the need to improve the diagnostic journey for patients with Sjögren’s disease.
This has been an AudioAbstract, and I’m Ryan Quigley. To access this and other episodes in our series, visit ReachMD dot com, where you can Be Part of the Knowledge. Thanks for listening!
Reference:
Lalla A, Egana A, Milligan J, Massey N, Haughton J. Patient journey, disease burden, treatment patterns, and the impact of delayed diagnosis among patients with Sjögren's disease: a real-world US survey. ACR Open Rheumatol. 2026;8(10):e90143. doi:10.1002/acr2.90143
