Department of Psychosomatic Medicine and Psychotherapy, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
PLoS One. 2019 Feb 20;14(2):e0211343. doi: 10.1371/journal.pone.0211343. eCollection 2019.
Empirical evidence on depression and anxiety in patients with rare diseases is scarce but can help improve comprehensive treatment. The objectives of this study were to investigate the frequency of depression and anxiety in this heterogeneous population and to examine aspects associated with increased psychopathology.
N = 300 patients with 79 different rare diseases (female:80%, age:M = 44.3(12.8), range:16-74 years) participated in a cross-sectional online study. We determined the percentages of patients reporting elevated depression (PHQ-9) and anxiety (GAD-7) scores. We calculated two linear regressions with depression and anxiety as outcomes. Predictor variables were diagnosis-related aspects (diagnosis assigned to ICD-10 chapter, visibility of symptoms, time since diagnosis, comorbid diseases), perceived somatic-symptom-severity (PHQ-15), illness-perceptions (consequences, control, identity, concern, understanding and treatment control; B-IPQ-R), coping mechanisms (constructive attitudes, active engagement in life) and social support (heiQ). We controlled for gender, age and depression or anxiety depending on the outcome.
42% of the patients (95%CI [36.41%,47.59%]) reported depression scores indicating moderately or severely elevated symptom levels. Regarding anxiety, this applies to 23% (95%CI [18.54%,28.06%]). Variables significantly associated with depression were higher perceived somatic-symptom-severity (B = 0.41,p < .001), less control (B = .17,p < .05), lower levels of concern (B = -0.32,p < .01) and less constructive attitudes (B = -1.40,p < .001). No diagnosis-related variables were associated with depression. Variables significantly associated with anxiety were diseases of the circulatory system compared to congenital malformations (B = 1.88,p < .05), less consequences (B = -0.32,p < .05) and more concern (B = -0.32,p < .01).
The data reveal first insights into depression and anxiety in patients with different rare diseases. High percentages of patients showed clinically relevant symptom burden. No diagnosis-related differences were found in depression while anxiety seems to be particularly frequent in patients with rare diseases of the circulatory system. Besides perceived somatic symptom severity, cognitive appraisal seems to be linked to depression. Supporting patients in coping with their disease may help reduce psychopathology and therefore improve overall health.
罕见病患者的抑郁和焦虑的实证证据很少，但可以帮助改善综合治疗。本研究的目的是调查这一异质人群中抑郁和焦虑的发生频率，并探讨与增加精神病理学相关的方面。
300 名患有 79 种不同罕见疾病的患者（女性：80%，年龄：M = 44.3(12.8)，范围：16-74 岁）参加了一项横断面在线研究。我们确定了报告抑郁（PHQ-9）和焦虑（GAD-7）评分升高的患者比例。我们计算了两个以抑郁和焦虑为结果的线性回归。预测变量是与诊断相关的方面（ICD-10 章节中分配的诊断、症状的可见性、诊断后时间、合并症）、感知的躯体症状严重程度（PHQ-15）、疾病认知（后果、控制、身份、关注、理解和治疗控制；B-IPQ-R）、应对机制（建设性态度、积极参与生活）和社会支持（heiQ）。我们控制了性别、年龄以及取决于结果的抑郁或焦虑。
42%的患者（95%CI [36.41%,47.59%]）报告的抑郁评分表明症状水平中度或重度升高。关于焦虑，这适用于 23%（95%CI [18.54%,28.06%]）的患者。与抑郁显著相关的变量是更高的感知躯体症状严重程度（B = 0.41，p <.001）、较低的控制感（B =.17，p <.05）、较低的关注程度（B = -0.32，p <.01）和较低的建设性态度（B = -1.40，p <.001）。与诊断相关的变量与抑郁无关。与焦虑显著相关的变量是与先天性畸形相比，循环系统疾病（B = 1.88，p <.05）、较少的后果（B = -0.32，p <.05）和更多的关注（B = -0.32，p <.01）。
这些数据首次揭示了不同罕见病患者的抑郁和焦虑情况。高比例的患者表现出具有临床意义的症状负担。在抑郁方面没有发现与诊断相关的差异，而焦虑在循环系统罕见病患者中似乎更为常见。除了感知的躯体症状严重程度外，认知评估似乎与抑郁有关。支持患者应对疾病可能有助于减少精神病理学，从而改善整体健康。
