Foster H E, Eltringham M S, Kay L J, Friswell M, Abinun M, Myers A
Musculoskeletal Research Group, School Clinical Medical Sciences, Newcastle University, Newcastle upon Tyne, UK.
Arthritis Rheum. 2007 Aug 15;57(6):921-7. doi: 10.1002/art.22882.
To document pathways of care, management, and interval from onset of symptoms to first pediatric rheumatology multidisciplinary team (PRhMDT) assessment for children with incident juvenile idiopathic arthritis (JIA).
We conducted a retrospective observational study of children with incident JIA over a 3-year period.
The study included 152 patients with JIA (87 females). The median interval from symptom onset to first PRhMDT assessment was 20 weeks (range 0-416), with significant variation between JIA subtypes (P = 0.0097); children with extended oligoarticular JIA had the longest interval (median 60 weeks, range 12-320). Prior to pediatric rheumatology assessment, many children had referrals to multiple secondary care specialties and had been subjected to multiple and often invasive procedures including arthroscopy/synovial biopsy (18 [11.8%] of 152), but none were referred for ophthalmologic screening, physical therapy, or nursing input and a diagnosis of JIA was rarely made (98%). At first PRhMDT assessment, most patients had untreated active disease with active joint count >or=1 (135 [89%] of 152), restricted joint count >or=1 (135 [89%] of 152), and functional disability by Child Health Assessment Questionnaire score >0 (53 [68%] of 118); 1 child had undetected uveitis. Following PRhMDT assessment, interventions were invariably indicated, including joint injections (69 [45%] of 152), methotrexate (49 [32%] of 152), and physical therapy programs (all patients).
Delay in access to pediatric rheumatology assessment is common with complex pathways of referral. Many children were subjected to inappropriate invasive investigations and many had prolonged untreated active disease at the initial PRhMDT assessment. This delay is likely to affect long-term outcome and warrants further exploration.
记录新发幼年特发性关节炎（JIA）患儿的护理、管理路径以及从症状出现到首次接受儿科风湿病多学科团队（PRhMDT）评估的时间间隔。
我们对3年内新发JIA患儿进行了一项回顾性观察研究。
该研究纳入了152例JIA患者（87例女性）。从症状出现到首次PRhMDT评估的中位时间间隔为20周（范围0 - 416周），JIA各亚型之间存在显著差异（P = 0.0097）；扩展性少关节型JIA患儿的时间间隔最长（中位时间60周，范围12 - 320周）。在接受儿科风湿病评估之前，许多患儿被转诊至多个二级护理专科，并接受了多种且往往具有侵入性的检查，包括关节镜检查/滑膜活检（152例中的18例[11.8%]），但无人接受眼科筛查、物理治疗或护理干预，且很少作出JIA诊断（98%）。在首次PRhMDT评估时，大多数患者存在未经治疗的活动性疾病，活动性关节计数≥1（152例中的135例[89%]），受限关节计数≥1（152例中的135例[89%]），且根据儿童健康评估问卷评分功能残疾>0（118例中的53例[68%]）；1例患儿存在未被发现的葡萄膜炎。在PRhMDT评估之后，总是需要进行干预，包括关节注射（152例中的69例[45%]）、甲氨蝶呤（152例中的49例[32%]）以及物理治疗方案（所有患者）。
由于转诊路径复杂，获得儿科风湿病评估的延迟很常见。许多患儿接受了不适当的侵入性检查，且许多患儿在首次PRhMDT评估时存在长期未经治疗的活动性疾病。这种延迟可能会影响长期预后，值得进一步探究。
