Disease burden and social impact of pediatric chronic nonbacterial osteomyelitis from the patient and family perspective

• DOI: 10.1186/s12969-018-0294-1
• Publication Date: 2018-12-14T07:43:20Z
• Authors: Melissa Oliver; Tzielan C. Lee; Bonnie Halpern-Fe...; Elizabeth Murray; Rebecca Schwartz; Yongdong Zhao
• Keywords: Social impact

Chronic nonbacterial osteomyelitis (CNO) is an autoinflammatory bone disorder that if left untreated can result in destruction and severe continuing pain due to persistent inflammation. The impact this chronic disease has on the daily lives of affected children their families not well known. purpose study understand burden socioeconomic psychological CNO from patients' families' perspectives identify areas improvement for patient care reduced based responses.Participants were invited through a social media platform group at clinic visits Stanford Children's Health. An online survey was administered patients with diagnosis made < 22 years age and/or parent/guardian age.There total 284 participants. median 10 (range 2-22+). Median time first symptom 2 years. Antibiotics used 35% prior diagnosis; these, 24% received antibiotics greater than 6 months. Between 25 61% reported negative effect relationships, school/work performance, or finances; 19-50% effects psychosocial well-being. majority agreed performance tasks hobbies challenged by pain, fatigue physical limitation related CNO.Patients experienced average 2-year delay receiving effective treatments. At least 25% problems school, work, finances well-being CNO. Recognition these challenges emphasizes need increase awareness address stressors mental health issues order provide optimal