Z.S. Wallace, MD, MSc, F.V. Castelino, MD, H.K. Choi, MD, DrPH, C. Perugino, DO, J.H. Stone, MD, Division of Rheumatology, Allergy, and Immunology, Massachusetts General Hospital, and Mongan Institute, and Harvard Medical School.
C. Cook, MPH, X. Fu, MS, Division of Rheumatology, Allergy, and Immunology, Massachusetts General Hospital, and Mongan Institute.
J Rheumatol. 2022 Sep;49(9):1058-1066. doi: 10.3899/jrheum.211084. Epub 2022 Apr 1.
Patients with systemic autoimmune rheumatic diseases (SARDs) face illness-related uncertainty, but little is known about the psychological profiles and psychosocial and health needs associated with uncertainty among adults with SARDs.
Patients from the Massachusetts General Hospital with antineutrophil cytoplasmic antibody-associated vasculitis (AAV), IgG4-related disease (IgG4-RD), and systemic sclerosis (SSc) completed the Mishel Uncertainty in Illness Scale, 8-item Patient Health Questionnaire depression scale, 7-item General Anxiety Disorder scale, Sickness Impact Profile, and a survey of psychosocial needs. The associations of uncertainty and self-reported needs with depression, anxiety, and sickness impact were assessed.
One hundred thirty-two patients with AAV (n = 41, 31%), IgG4-RD (n = 61, 46%), or SSc (n = 30, 23%) participated. The mean age was 64 years, 52% were female, and 83% were White. Greater illness-related uncertainty was positively correlated with higher levels of depression ( = 0.43, < 0.001), anxiety ( = 0.33, < 0.001), and sickness impact ( = 0.28, = 0.001). We observed variations in these measures across SARDs, such that uncertainty was more strongly associated with depression and sickness impact in AAV or SSc compared to IgG4-RD. The primary needs that patients endorsed were services for managing physical symptoms (53%), self-care (37%), and emotional concerns (24%), with greater needs strongly associated with greater illness-related uncertainty.
Among patients with SARDs, illness-related uncertainty is correlated with levels of depression, anxiety, and sickness impact, as well as psychosocial needs. Findings also implicate the need for targeted interventions to address uncertainty and needs among subgroups of patients with different illness profiles.
患有系统性自身免疫性风湿病（SARDs）的患者面临与疾病相关的不确定性，但对于患有 SARDs 的成年人的不确定性相关的心理特征、心理社会和健康需求知之甚少。
马萨诸塞州综合医院的抗中性粒细胞胞质抗体相关性血管炎（AAV）、IgG4 相关疾病（IgG4-RD）和系统性硬化症（SSc）患者完成了疾病不确定感量表、8 项患者健康问卷抑郁量表、7 项广泛性焦虑症量表、疾病影响量表和心理社会需求调查。评估了不确定性和自我报告的需求与抑郁、焦虑和疾病影响的相关性。
132 名 AAV（n=41，31%）、IgG4-RD（n=61，46%）或 SSc（n=30，23%）患者参与了研究。平均年龄为 64 岁，52%为女性，83%为白人。与疾病相关的不确定性越高，抑郁（=0.43，<0.001）、焦虑（=0.33，<0.001）和疾病影响（=0.28，=0.001）的水平越高。我们观察到这些措施在 SARDs 之间存在差异，例如，AAV 或 SSc 患者的不确定性与抑郁和疾病影响的相关性强于 IgG4-RD。患者最关注的需求是管理身体症状的服务（53%）、自我护理（37%）和情绪问题（24%），更高的需求与更高的疾病相关不确定性密切相关。
在 SARDs 患者中，与疾病相关的不确定性与抑郁、焦虑和疾病影响水平以及心理社会需求相关。研究结果还表明，需要针对不同疾病特征的患者亚组进行有针对性的干预，以解决不确定性和需求问题。
