ACR Meeting Abstracts

ACR Meeting Abstracts

  • Home
  • Meetings Archive
    • ACR Convergence 2020
    • 2020 ACR/ARP PRSYM
    • 2019 ACR/ARP Annual Meeting
    • 2018 ACR/ARHP Annual Meeting
    • 2017 ACR/ARHP Annual Meeting
    • 2017 ACR/ARHP PRSYM
    • 2016-2009 Meetings
    • Download Abstracts
  • Keyword Index
  • Advanced Search
  • Your Favorites
    • Favorites
    • Login
    • Register
    • View and print all favorites
    • Clear all your favorites
  • Meeting Resource Center

Abstract Number: 82

Disease Burden and Social Impact of Chronic Nonbacterial Osteomyelitis on Affected Children and Young Adults

Melissa Oliver1, Tzielan Lee2, Bonnie Halpern-Felsher3, Elizabeth Murray4, Rebecca Gholson5 and Yongdong Zhao6, 1Pediatric Rheumatology, Stanford University, Department of Pediatric Rheumatology, Palo Alto, CA, 2Stanford University, Department of Pediatric Rheumatology, Palo Alto, CA, 3Pediatrics, Adolescent Medicine, Stanford University, Department of Pediatrics, Adolescent Medicine, Palo Alto, CA, 4CRMO Facebook Support Group, Seattle, WA, 5CRMO Facebook Support Group, Asheville, NC, 6Seattle Children's Hospital, Department of Pediatric Rheumatology, University of Washington, Seattle, WA

Meeting: 2017 Pediatric Rheumatology Symposium

Keywords: Chronic recurrent multifocal osteomyelitis (CRMO) and pediatric rheumatology

  • Tweet
  • Email
  • Print
Save to PDF
Session Information

Date: Thursday, May 18, 2017

Session Title: Clinical and Therapeutic Poster Session

Session Type: Abstract Submissions

Session Time: 5:30PM-7:00PM

Background/Purpose:

Chronic Nonbacterial Osteomyelitis (CNO) is a rare autoinflammatory bone disorder that can result in bone destruction, persistent bone pain, growth disturbances and pathological fractures. CNO is a diagnosis of exclusion; as such, families may experience obstacles before being diagnosed. Little is known about the impact of CNO on the daily lives of patients and their families. The objective of this study is to understand the disease burden and socioeconomic and psychological impact of CNO from the patients’ and families’ perspectives, with the goal of identifying areas of improvement for patient care and reduced disease burden.

 

Methods:

Population targeted were patients with a diagnosis of CNO made at <22 yrs of age and/or their parent/guardian if patient’s age at time of study was <18 yrs. Participants were invited through the Facebook CNO support group and at clinic visits at Stanford Children’s Health. The survey was administered and completed online through RedCap. Descriptive statistics were conducted with continuous variables reported as means/medians (SD/range) and categorical variables as frequencies and percentages.

 

Results:

A total of 284 consented and completed the survey. The median age at CNO diagnosis was 10 yrs (range 2-22+). Median time from first CNO symptom to diagnosis was 2 yrs with 48% first seeing a pediatric rheumatologist after 12 months of symptoms. Antibiotics, which are not an effective treatment for CNO, were used in 34.5% of patients prior to CNO diagnosis; of these, 24% received antibiotics for greater than 6 months (Table 1). Difficulty with obtaining MRI studies occurred in 26.7%. Between 25% and 61% reported a negative effect on relationships, school/work or finances; and 19% to 50% reported effects on psychosocial well-being. The majority agreed patients’ performance with daily tasks and hobbies was challenged due to pain, fatigue and physical limitation related to CNO (Figure 1).

 

Conclusion:

This is the first study to understand the burden of CNO from the patients’ and families’ perspectives. Many experienced delays in diagnosis and seeing a pediatric rheumatologist, ineffective treatments, and problems with relationships, school, work, finances and well-being. Our findings emphasize the importance of educating the medical community about CNO, facilitating earlier referrals to rheumatology and assisting patients/families to cope with socioeconomic stressors and mental health issues. The findings will help develop specific patient reported outcome measures to be used for future clinical trials or comparative effectiveness studies.

 


Disclosure: M. Oliver, None; T. Lee, None; B. Halpern-Felsher, None; E. Murray, None; R. Gholson, None; Y. Zhao, 2.

To cite this abstract in AMA style:

Oliver M, Lee T, Halpern-Felsher B, Murray E, Gholson R, Zhao Y. Disease Burden and Social Impact of Chronic Nonbacterial Osteomyelitis on Affected Children and Young Adults [abstract]. Arthritis Rheumatol. 2017; 69 (suppl 4). https://acrabstracts.org/abstract/disease-burden-and-social-impact-of-chronic-nonbacterial-osteomyelitis-on-affected-children-and-young-adults/. Accessed April 13, 2021.
  • Tweet
  • Email
  • Print
Save to PDF

« Back to 2017 Pediatric Rheumatology Symposium

ACR Meeting Abstracts - https://acrabstracts.org/abstract/disease-burden-and-social-impact-of-chronic-nonbacterial-osteomyelitis-on-affected-children-and-young-adults/

Advanced Search

Your Favorites

You can save and print a list of your favorite abstracts by clicking the “Favorite” button at the bottom of any abstract. View your favorites »

ACR Convergence: Where Rheumatology Meets. All Virtual. November 5-9.

ACR Pediatric Rheumatology Symposium 2020

© COPYRIGHT 2021 AMERICAN COLLEGE OF RHEUMATOLOGY

Wiley

  • Home
  • Meetings Archive
  • Advanced Search
  • Meeting Resource Center
  • Online Journal
  • Privacy Policy
  • Permissions Policies
loading Cancel
Post was not sent - check your email addresses!
Email check failed, please try again
Sorry, your blog cannot share posts by email.
This site uses cookies: Find out more.