Oslo University Hospital, Rikshospitalet, and Lovisenberg Diaconal Hospital, Oslo, Norway.
Oslo University Hospital, Rikshospitalet, Oslo, Norway.
Arthritis Care Res (Hoboken). 2018 May;70(5):741-749. doi: 10.1002/acr.23327. Epub 2018 Mar 7.
To describe physical functioning, pain, and health-related quality of life (HRQoL) in adults with juvenile idiopathic arthritis (JIA), investigate changes over time, and identify predictors of poorer HRQoL after 30 years of disease.
Patients (n = 176) clinically examined after 15 years were reassessed using the Health Assessment Questionnaire disability index (HAQ DI), the visual analog scale pain subscale (VAS pain), and the Medical Outcomes Study Short Form 36 (SF-36) after 23 years and 30 years. Patients with signs of active disease after a minimum of 15 years were clinically examined again at 30 years. Patients were compared to matched controls.
At the 30-year followup, 82 patients (47%) had HAQ DI scores >0, and the median VAS pain score in patients was 0.6 (range 0-10). Patients had lower SF-36 physical component summary (PCS) scores compared with controls (P < 0.001), and this was evident for patients both with and without clinical remission (P ≤ 0.01). No group differences were found in SF-36 mental component summary scores. Patients also scored worse than controls on all SF-36 subscales (P ≤ 0.01) except mental health. PCS scores worsened significantly between the 15- and 30-year followup time points (P = 0.001). Worse HAQ DI, VAS pain, and patient's global assessment of well-being scores, and receiving disability/social living allowance at 30 years, were correlated with lower PCS scores. Worse HAQ DI, patient's global assessment of well-being, and VAS fatigue scores at 15-year followup predicted lower PCS scores at 30-year followup.
JIA had a detrimental effect on physical HRQoL as measured by the PCS of the SF-36. The strongest correlates were physical disability, pain, fatigue, well-being, and receiving disability/social living allowance.
描述青少年特发性关节炎(JIA)成年患者的身体功能、疼痛和健康相关生活质量(HRQoL),研究随时间的变化,并确定 30 年后 HRQoL 较差的预测因素。
15 年后进行临床检查的患者(n=176),在 23 年和 30 年后,使用健康评估问卷残疾指数(HAQ DI)、视觉模拟量表疼痛量表(VAS 疼痛)和医疗结局研究 36 项简短量表(SF-36)进行重新评估。在至少 15 年后有疾病活动迹象的患者,在 30 年后再次进行临床检查。将患者与匹配的对照组进行比较。
在 30 年随访时,82 名患者(47%)的 HAQ DI 评分>0,患者的 VAS 疼痛评分中位数为 0.6(范围 0-10)。与对照组相比,患者的 SF-36 生理成分综合评分(PCS)较低(P<0.001),且在有和无临床缓解的患者中均如此(P≤0.01)。SF-36 心理成分综合评分在两组之间无差异。患者在 SF-36 所有子量表上的评分也低于对照组(P≤0.01),除心理健康外。PCS 评分在 15 年至 30 年随访时间点之间显著恶化(P=0.001)。30 年时 HAQ DI、VAS 疼痛和患者总体健康状况评估评分较差,以及接受残疾/社会生活津贴,与较低的 PCS 评分相关。15 年随访时 HAQ DI、患者总体健康状况和 VAS 疲劳评分较差,预测 30 年随访时 PCS 评分较低。
JIA 对 SF-36 的 PCS 测量的身体 HRQoL 有不利影响。最强的相关因素是身体残疾、疼痛、疲劳、健康状况和接受残疾/社会生活津贴。