Berg Elisabeth A B, McGregor JulieAnne G, Burkart Madelyn E, Poulton Caroline J, Hu Yichun, Falk Ronald J, Hogan Susan L
Division of Nephrology and Hypertension, University of North Carolina Kidney Center, University of North Carolina, Chapel Hill, NC, USA.
J Autoimmune Dis Rheumatol. 2014 Nov 1;2(3):74-91. doi: 10.12970/2310-9874.2014.02.03.2.
The use and impact of complementary and alternative medicine (CAM) for anti-neutrophil cytoplasmic antibody (ANCA) associated vasculitis (AAV) has not been reported. AAV patients seeking care at our center inquired about CAM, prompting a formal study. Study objectives were to discern how many AAV patients used CAM and its perceived helpfulness in disease management.
AAV patients completed a CAM questionnaire between July 2011 and May 2012. Patients were 18 years or older and had biopsy proven and/or clinical evidence of AAV. Medical record abstraction supplemented data. Classification detailed CAM type including "Mind" or "Mind-Body". Perceived helpfulness of CAM was assessed as "very", "somewhat" or "not at all/don't know".
A total of 107 patients participated and were a mean age of 53 (range: 18-85), 62% female; 48% proteinase 3 (PR3)-ANCA, 44% myeloperoxidase (MPO)-ANCA and 8% ANCA-negative. Top organs involved included kidney (87%), joints (55%), lung (53%) and upper respiratory (53%). At least one type of CAM treatment or self-help practice was reported by 81% of study participants, with the most frequent being prayer (64%), exercise (27%) and massage therapy (19%). Mind-based practices were used by 28% (excluding prayer) and Mind-Body practices by 14%. Most practices were used to improve wellbeing, and Mind and Mind-Body were deemed very helpful by 83% and 87% respectively. Only 24% of study participants discussed CAM with their physician.
CAM practices were commonly used to improve well-being and found to be beneficial among AAV patients, but more open discussion is needed about CAM between physicians and patients.
尚未有关于补充和替代医学（CAM）用于抗中性粒细胞胞浆抗体（ANCA）相关血管炎（AAV）的使用情况及影响的报道。在我们中心寻求治疗的AAV患者询问了CAM相关情况，促使我们开展一项正式研究。研究目的是了解有多少AAV患者使用CAM及其在疾病管理中被感知到的帮助程度。
2011年7月至2012年5月期间，AAV患者完成了一份CAM问卷。患者年龄在18岁及以上，有活检证实和/或AAV的临床证据。病历摘要补充了数据。分类详细列出了CAM类型，包括“精神类”或“身心类”。CAM的感知帮助程度被评估为“非常有帮助”、“有些帮助”或“完全没有帮助/不知道”。
共有107名患者参与，平均年龄为53岁（范围：18 - 85岁），62%为女性；48%为蛋白酶3（PR3）-ANCA，44%为髓过氧化物酶（MPO）-ANCA，8%为ANCA阴性。受累的主要器官包括肾脏（87%）、关节（55%）、肺（53%）和上呼吸道（53%）。81%的研究参与者报告了至少一种类型的CAM治疗或自助方法，最常见的是祈祷（64%）、运动（27%）和按摩疗法（19%）。28%的人使用了基于精神的方法（不包括祈祷），14%的人使用了身心类方法。大多数方法用于改善健康状况，精神类和身心类方法分别被83%和87%的人认为非常有帮助。只有24%的研究参与者与他们的医生讨论过CAM。
CAM方法常用于改善健康状况，并且在AAV患者中被发现是有益的，但医生和患者之间需要就CAM进行更开放的讨论。
