Silier Colen Cooper Gore, Greschik Justina, Gesell Susanne, Grote Veit, Jansson Annette F
Department of Rheumatology and Immunology, Dr. von Hauner Children's Hospital, Ludwig-Maximilians-University, Munich, Germany.
Department of Orthopaedic Surgery, Physical Medicine and Rehabilitation, Ludwig-Maximilians-University, Munich, Germany.
BMJ Open. 2017 Dec 26;7(12):e017599. doi: 10.1136/bmjopen-2017-017599.
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.
Health services research, patient survey.
Ludwig-Maximilians-University (LMU) Pediatric Rheumatology Department CNO Conferences held in June 2013 and June 2015.
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.
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.
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.
尽管慢性非细菌性骨炎（CNO）在儿科群体和成人医疗群体中越来越受到认可，但尚无一项研究从大量人群中评估CNO的诊断、治疗及社会心理方面。我们旨在从患者角度对CNO展开调查。
卫生服务研究，患者调查。
2013年6月和2015年6月在路德维希-马克西米利安大学（LMU）儿科风湿病科召开的CNO会议。
使用LMU儿科风湿病科制定的患者调查问卷，对105名年龄在5至63岁之间的CNO患者进行评估，内容包括流行病学数据、病史与治疗、初始症状、诊断程序、当前症状、相关疾病、当前治疗医生、因病缺课及旷工情况以及疾病对患者、家人和朋友的影响。
90%的到场患者报告患有活动性CNO，其中73%为女性，27%为男性。绝大多数（70%）报告在症状出现后18个月内确诊；然而，初始诊断范围广泛，36%被诊断为恶性肿瘤，30%被诊断为细菌性骨髓炎，大多数患者接受了抗生素治疗和/或活检。当被问及该疾病的社会心理方面时，83%的患者报告非细菌性骨炎（NBO）对家庭产生了负面影响，79%的患者报告NBO对学校或工作产生了负面影响，56%的患者报告对友谊产生了负面影响。
诊断延迟、面临如恶性肿瘤等鉴别诊断以及寻找专科医疗护理人员等情况，是导致患者寻求更多信息的部分原因。对日常生活包括家庭关系、友谊以及工作/学习的负面影响凸显了提供更好的社会心理支持的必要性，比如指导咨询或心理支持，因为四分之三的患者未得到此类支持。
