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Chronic non-bacterial osteitis from the patient perspective: a health services research through data collected from
Colen Cooper Gore Silier1, Justina Greschik2, Susanne Gesell2
1Department of Rheumatology and Immunology, Dr. von Hauner Children's Hospital, Ludwig-Maximilians-University, Munich, Germany.
Insights
Chronic non-bacterial osteitis (CNO) significantly impacts patients and families, with delayed diagnoses and a need for better psychosocial support. This study highlights the patient experience with CNO, emphasizing its effects on daily life.
Area of Science:
- Rheumatology
- Pediatric Rheumatology
- Health Services Research
Background:
- Chronic non-bacterial osteitis (CNO) is increasingly recognized in pediatric and adult populations.
- A comprehensive understanding of CNO's diagnostic and psychosocial aspects from a large patient cohort was lacking.
Purpose of the Study:
- To investigate the patient perspective on the diagnosis, treatment, and psychosocial impact of chronic non-bacterial osteitis (CNO).
Main Methods:
- A patient survey was developed and administered by the LMU Pediatric Rheumatology Department.
- 105 patients (ages 5-63) with CNO participated, providing data on demographics, medical history, symptoms, diagnosis, treatment, and psychosocial impact.
Main Results:
- 90% of patients had active CNO; 73% were female. 70% were diagnosed within 18 months, but initial diagnoses varied widely (36% malignancies, 30% bacterial osteomyelitis).
- Significant psychosocial impacts were reported: 83% affected family, 79% affected school/work, and 56% affected friendships.
- Three-quarters of patients received no formal psychosocial support.
Conclusions:
- Delayed diagnoses and the need to rule out serious conditions like malignancies contribute to patient challenges.
- The substantial negative impact on daily life underscores a critical need for enhanced psychosocial support services for CNO patients and their families.
Objective:
Although chronic non-bacterial osteitis (CNO) is an ever-increasingly recognised illness in the paediatric community and the adult healthcare community, a study to assess diagnosing, treatment and the psychosocial aspect of CNO from a large population pool was not available. We aimed to investigate CNO from the patient perspective.
Design:
Health services research, patient survey.
Setting:
Ludwig-Maximilians-University (LMU) Pediatric Rheumatology Department CNO Conferences held in June 2013 and June 2015.
Participants:
Using a patient survey developed by the LMU Pediatric Rheumatology Department, 105 patients from ages 5 to 63 years were assessed regarding CNO to include epidemiological data, medical history and treatment, initial symptoms, diagnostic procedures, current symptoms, associated diseases, current treating physicians, absences in school and work due to illness and the impact of illness on patient, family and friends.
Results:
Active CNO was reported in 90% of patients present, with 73% being women and 27% being men. An overwhelming majority (70%) reported being diagnosed within 18 months of onset of symptoms; however, the initial diagnoses were wide-ranged to include malignancies in 36% to bacterial osteomyelitis in 30%, where the majority were treated with an antibiotic and/or were biopsied. When asked about the psychosocial aspect of this illness, 83% reported that non-bacterial osteitis (NBO) negatively impacted the family, 79% reported that NBO has negatively affected either school or work and 56% reported a negative impact on friendships.
Conclusion:
Delay of diagnosis, living with differential diagnoses like malignancies and finding specialists for medical care are a few examples of what leads patients into searching for more information. The negative impact on daily life including family relationships, friendships and work/school highlights a need for better psychosocial support such as guidance counselling or psychological support due to three-quarters of patients receiving no such said support.
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