Patients With Autoimmune Rheumatic Diseases Often Wait Months Before Diagnosis

Patients with axial spondyloarthritis waited the longest, according to new research.

The interval between symptom onset and diagnosis can be several months for patients with autoimmune rheumatic diseases (ARDs), according to a new study that suggests better interventions need to be developed to more quickly identify potential patients.

New research in International Journal of Rheumatic Diseases delves into the issue of patient diagnosis by examining the timelines associated with symptom onset, medical visits, testing, and final diagnosis among patients in Singapore. The patients in the study were already enrolled in a study designed to cross-culturally adapt screening questionnaires to make them more effective in Singapore, whose largest ethnic groups are Chinese, Indian, and Malay.

The investigators built their study around 4 intervals of time:

  • Interval 1: symptom onset to a patient’s first visit with a health care professional
  • Interval 2: first visit to a rheumatology referral
  • Interval 3: rheumatology referral to the first rheumatology assessment
  • Interval 4: assessment to final diagnosis

The authors sought to quantify these 4 intervals and then figure out what factors were associated with longer timelines.

A total of 259 patients, with a median age of 52, were included in the study. Most (71%) were female, and the most common diagnoses were rheumatoid arthritis (75 patients), axial spondyloarthritis (40 patients), and psoriatic arthritis (35 patients).

The median overall interval between symptom onset and diagnosis was 11.5 (range, 4.7-36.0) months, most of which fell into Interval 1, and the median time for Interval 1 was 4.9 months, compared with 0.3, 1.5, and zero months for Intervals 2, 3, and 4, respectively.

Waiting for their diagnosis was particularly long for patients with axial spondyloarthritis, who had a median total prediagnosis time of 38.7 months and a median Interval 1 of 26.6 months.

The most common documented symptoms in the study were joint pain (78%), joint swelling (61%), and joint stiffness (53%). When patients were asked why they did not report their symptoms sooner, the authors noted, 2 themes emerged. Some patients said they were unaware of the changes taking place, and others said they noticed the symptoms but believed them to be normal bodily changes rather than a sign of disease.

When the authors sought to link specific factors with patient intervals, only 1 factor made a statistically significant difference: referral source. Patients referred to a rheumatologist from specialty care had longer overall prediagnosis times and longer Interval 1 times vs those referred from primary care. The authors said there are a couple of likely reasons for this.

First, seeking care from a nonrheumatology specialist suggests the patients were misattributing their symptoms. “Second, nonrheumatology specialists are obliged to exclude diseases in their specialties before referring a patient to rheumatology care,” the authors said. “Hence, these patients might have even longer intervals if the ARD causes for their symptoms were not recognized by nonrheumatology specialists.”

The probable reasons the latter 3 intervals were short, Thumboo and colleagues said, are that Singapore has a high-quality universal-coverage health care system, and rheumatological diagnosis has improved in recent years.

“It also highlights the importance of interventions targeting patients prior to their first visit to health care professionals in reducing the prediagnosis interval,” they said.

The authors listed several strategies to help patients more quickly link their symptoms to potential autoimmune rheumatic diseases. Among the ideas were public-awareness campaigns and self-administered screening questionnaires that include illustrations and descriptions of symptoms.

They also said it is possible their study undercounted the number of patients who underreported their symptoms, but noted that it is difficult to arrive at an accurate figure.

“Ideally, individuals with possible ARD symptoms in the general population should be studied prior to their first visit to health care professionals and followed till their diagnosis and commencement of treatment,” they concluded. “However, such design is operationally challenging and requires a much larger sample size due to the low prevalence of ARDs in the general population.”

Reference

Xiang L, Low AHL, Leung YY, et al. Interval between symptom onset and diagnosis among patients with autoimmune rheumatic diseases in a multi-ethnic Asian population. Int J Rheum Dis. 2021;24(8):1061-1070. doi:10.1111/1756-185X.14165