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Chronic nonbacterial osteomyelitis diagnosis often delayed up to 2 years
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Patients with chronic nonbacterial osteomyelitis on average experience a 2-year delay in receiving a diagnosis and effective treatment, and at least 25% report issues with relationships, school, work, finances and well-being due to the disease, according to data published in Pediatric Rheumatology.
“Due to the gradual onset, minimal physical exam findings and low sensitivity of radiographs, children with [chronic nonbacterial osteomyelitis] may experience delays in diagnosis and access to a pediatric rheumatologist and ineffective treatments such as prolonged courses of antibiotics,” Melissa Oliver, MD, MS, of Indiana University, and colleagues wrote. “Most studies involving children with [chronic nonbacterial osteomyelitis] evaluated the long-term clinical outcomes from a management or disease activity perspective. ... However, more studies are needed to address the disease burden and the unmet need of psychosocial support for this chronic disease.”
To better understand the disease burden and socioeconomic/psychological impacts experienced by patients with chronic nonbacterial osteomyelitis and their families, as well as identify areas of improvement for care and reduced disease burden, Oliver and colleagues recruited participants to complete an online survey. The survey, developed by the study team and refined by parents of children with chronic nonbacterial osteomyelitis, included 100 questions on pre-diagnosis management, post-diagnosis management and quality of life.
The researchers recruited participants both during Stanford Children’s Health clinic visits and through Facebook via a chronic recurrent multifocal osteomyelitis support group, which had 1,334 members. A total of 350 participants initiated the survey, with 61 responses excluded due to the individual not providing consent, and five excluded because the age of disease onset was after 21 years. In all, 284 survey responses were included in the final analysis, despite 75 of them being only partially completed.
According to the researchers, the median time from first symptom to diagnosis was 2years for patients with chronic nonbacterial osteomyelitis. Antibiotics were used in 35% of cases prior to diagnosis. Of those cases, 24% of patients received antibiotics for more than 6months. Between 25% and 61% of participants reported that chronic nonbacterial osteomyelitis had a negative effect on relationships, school, work or finances. In addition, 19% to 50% reported that the disease had effects on psychosocial well-being. Most participants agreed that their performance in daily tasks and hobbies was curbed by pain, fatigue and physical limitation in connection to chronic nonbacterial osteomyelitis.
“Our results emphasize the importance of understanding the challenges faced by patients and families with [chronic nonbacterial osteomyelitis] and the need for raising awareness for this rare disease in order to improve patient care and reduce disease burden,” Oliver and colleagues wrote. “Our next steps should focus on educating the medical community about [chronic nonbacterial osteomyelitis] to facilitate earlier referrals to rheumatologists for appropriate initial management, assistance with obtaining MRI imaging, guidance on effective treatments and additional support for socioeconomic stressors and mental health matters.” – by Jason Laday
Disclosure: Oliver reports no relevant financial disclosures. Please see the study for all other authors’ relevant financial disclosures.
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