Paediatric Rheumatology, Bristol Royal Hospital for Children, Bristol BS2 8BJ, UK.
Rheumatology (Oxford). 2013 Dec;52(12):2203-7. doi: 10.1093/rheumatology/ket273. Epub 2013 Sep 6.
To describe current clinical practice against the BSPAR/ARMA Standards of Care (SOCs) for children and young people (CYP) with incident JIA.
Ten UK paediatric rheumatology centres (including all current centres nationally accredited for paediatric rheumatology higher specialist training) participated in a retrospective case notes review using a pretested pro forma based on the SOC. Data collected per centre included clinical service configuration and the initial clinical care for a minimum of 30 consecutive new patients seen within the previous 2 years and followed up for at least 6 months.
A total of 428 CYP with JIA (median age 11 years, range 1-21 years) were included, with complete data available for 73% (311/428). Against the key SOCs, 41% (175/428) were assessed ≤10 weeks from symptom onset, 60% (186/311) ≤4 weeks from referral, 26% (81/311) had eye screening at ≤6 weeks, 83% (282/341) had joint injections at ≤6 weeks, 59% (184/311) were assessed by a nurse specialist at ≤4 weeks and 45% (141/311) were assessed by a physiotherapist at ≤8 weeks. A median of 6% of patients per centre participated in clinical trials. All centres had access to eye screening and prescribed biologic therapies. All had access to a nurse specialist and physiotherapist. Most had access to an occupational therapist (8/10), psychologist (8/10), joint injection lists (general anaesthesia/inhaled analgesia) (9/10) and designated transitional care clinics (7/10).
This first description of UK clinical practice in paediatric rheumatology benchmarked against the BSPAR/ARMA SOCs demonstrates variable clinical service delivery. Considerable delay in access to specialist care is evident and this needs to be addressed in order to improve clinical outcomes.
描述当前针对新发病幼年特发性关节炎（JIA）患儿和青少年（CYP）的 BSPAR/ARMA 标准护理（SOC）的临床实践情况。
10 家英国儿科风湿病学中心（包括全国范围内所有目前获得儿科风湿病学高级专科培训认证的中心）参与了一项回顾性病历审查，使用了基于 SOC 的预先测试表格。每个中心收集的数据包括临床服务配置以及在过去 2 年内至少连续 30 名新患者的初始临床护理情况，并且至少随访 6 个月。
共纳入 428 例 JIA CYP（中位年龄 11 岁，范围 1-21 岁），其中 73%（311/428）的患者可提供完整数据。在关键 SOC 方面，41%（175/428）从症状出现到评估的时间≤10 周，60%（186/311）从转诊到评估的时间≤4 周，26%（81/311）在≤6 周时进行了眼部筛查，83%（282/341）在≤6 周时进行了关节注射，59%（184/311）在≤4 周时由专科护士进行了评估，45%（141/311）在≤8 周时由物理治疗师进行了评估。每个中心平均有 6%的患者参与临床试验。所有中心都可以进行眼部筛查和生物治疗。所有中心都可以获得护士专家和物理治疗师的支持。大多数中心都可以获得职业治疗师（8/10）、心理学家（8/10）、关节注射清单（全身麻醉/吸入镇痛）（9/10）和指定的过渡护理诊所（7/10）。
这是首次描述英国儿科风湿病学临床实践情况，并与 BSPAR/ARMA SOC 进行了基准比较，结果显示出临床服务提供的差异性。明显存在获得专科护理的延迟，这需要加以解决，以改善临床结局。
