Centre for Musculoskeletal Research, Salford Royal NHS Foundation Trust, University of Manchester, Manchester Academic Health Science Centre, Manchester, UK,
Orion Corporation Orion Pharma, Research and Development, Turku, Finland.
Rheumatology (Oxford). 2015 Aug;54(8):1443-7. doi: 10.1093/rheumatology/kev002. Epub 2015 Mar 9.
To evaluate whether patients can predict attacks of RP (if so, this would have implications for developing new treatments) and to evaluate the impact of RP attacks on quality of life (QoL).
Individuals with RP were invited through international patient associations to participate in an online survey.
Responses from 443 subjects with self-reported RP from 15 countries were evaluable. The mean age of subjects was 41 years (91% female). Fifty-eight per cent of subjects reported they could predict at least 51% of RP attacks, and 57% could predict attack severity either fairly well or better [with 43% predicting severity only poorly (30%) or very poorly (13%)]. Sixty-four per cent of subjects reported a poor or very poor current ability to prevent/control RP attacks. One hundred and eighty-two subjects (41%) reported current or previous use of medications for RP: 82% reported at least one currently used medication being tolerated, but only 16% reported at least one current medication being effective. Most subjects (78%) reported making at least one life adjustment due to RP, with more in subjects with secondary RP compared with primary RP (87% vs 71%, P = 0.001). Current QoL with RP was impaired [mean = 6/10 (10 best imaginable)] and secondary RP subjects reported a greater absolute improvement when asked to imagine their QoL without RP (2.3 vs 3.3 P = 0.0002).
Subjects' ability to predict RP attacks is limited. Treatments were generally considered tolerable but seldom fully effective. Our results confirm an unmet need for new treatments. RP significantly impacts on QoL in all subjects.
评估患者是否能够预测 RP 发作（如果可以，这将对开发新的治疗方法产生影响），并评估 RP 发作对生活质量（QoL）的影响。
通过国际患者协会邀请 RP 患者参与在线调查。
来自 15 个国家的 443 名自我报告的 RP 患者对调查做出了回应。受试者的平均年龄为 41 岁（91%为女性）。58%的受试者报告称，他们能够预测至少 51%的 RP 发作，57%的受试者能够相当好或更好地预测发作的严重程度[其中 43%仅能较差（30%）或非常差（13%）地预测]。64%的受试者报告说，他们目前预防/控制 RP 发作的能力很差或非常差。182 名受试者（41%）报告正在使用或曾经使用过治疗 RP 的药物：82%的受试者报告至少有一种正在使用的药物可以耐受，但只有 16%的受试者报告至少有一种目前使用的药物有效。大多数受试者（78%）因 RP 而至少进行了一次生活调整，继发性 RP 患者比原发性 RP 患者进行更多的调整（87%比 71%，P = 0.001）。目前 RP 患者的生活质量受损[平均为 6/10（10 分制中最好的分数）]，当被要求想象没有 RP 的情况下他们的生活质量时，继发性 RP 患者的绝对改善更大（2.3 分比 3.3 分，P = 0.0002）。
患者预测 RP 发作的能力有限。治疗方法通常被认为是可以耐受的，但很少是完全有效的。我们的结果证实了对新治疗方法的需求未得到满足。RP 对所有患者的生活质量都有重大影响。
