Trajectories of depression and anxiety in adults with rare disorders across 13 months during the COVID-19 pandemic.

IF 3.5 2区 医学 Q2 GENETICS & HEREDITY Orphanet Journal of Rare Diseases Pub Date : 2025-03-20 DOI:10.1186/s13023-025-03633-3
Øyvind Halsøy, Stian Orm, Hugo Cogo-Moreira, Wendy K Silverman, Krister Fjermestad
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Abstract

Background: Adults with rare disorders experience multiple psychosocial risk factors beyond their medical symptoms, including impaired quality of life, social isolation, loneliness, and mental health problems. These risk factors were amplified during the COVID-19 pandemic, when health care appointments and social/vocational activities were reduced or cancelled. There is a lack of longitudinal data tracking this population over time, making the long term consequences uncertain.

Methods: We conducted a monthly survey of 58 adults aged between 19 and 71 years (M = 45.1 years, SD = 12.6) with rare disorders across 13 months during the COVID-19 pandemic in Norway. We measured symptoms of anxiety and depression with the Hopkins Symptom Checklist-5. Covid fear was measured with the Coronavirus Anxiety Scale. We examined the mental health and covid fear trajectories across the 13 months with multi-level growth curve models with repeated measures at Level 1 and individuals at Level 2. To account for differences in governmental restrictions throughout the 13 months, we used the stringency index from The Oxford Covid-19 Government Response Tracker.

Results: The growth models indicated stable levels of anxiety and depression over 13 months that were elevated compared to existing population data and were unpredicted by pandemic restrictions. The level of covid fear was significantly associated with the levels of anxious and depressive symptoms.

Conclusions: The current study found elevated and stable trajectories of mental health symptoms throughout the pandemic for persons with rare disorders. This highlights the necessity of investigating the long-lasting influence of the pandemic on mental health among individuals with rare disorders.

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COVID-19大流行期间13个月罕见疾病成人抑郁和焦虑的轨迹
背景:患有罕见疾病的成年人在其医学症状之外还会经历多种社会心理风险因素,包括生活质量受损、社会孤立、孤独和心理健康问题。在2019冠状病毒病大流行期间,当医疗预约和社会/职业活动减少或取消时,这些风险因素被放大了。由于缺乏长期跟踪这一人群的纵向数据,因此长期后果不确定。方法:在挪威COVID-19大流行期间,我们对58名年龄在19至71岁之间(M = 45.1岁,SD = 12.6)的罕见疾病患者进行了为期13个月的月度调查。我们用霍普金斯症状检查表-5测量焦虑和抑郁的症状。用冠状病毒焦虑量表测量新冠病毒恐惧。我们使用多层次增长曲线模型,在第1级和第2级重复测量,检查了13个月内的心理健康和covid恐惧轨迹。为了解释13个月内政府限制的差异,我们使用了牛津Covid-19政府应对追踪器的严格程度指数。结果:增长模型显示,与现有人口数据相比,焦虑和抑郁水平在13个月内保持稳定,这是大流行限制措施无法预测的。对covid的恐惧程度与焦虑和抑郁症状的水平显著相关。结论:目前的研究发现,在整个大流行期间,患有罕见疾病的人的精神健康症状的上升和稳定轨迹。这突出表明有必要调查大流行对罕见疾病患者心理健康的长期影响。
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来源期刊
Orphanet Journal of Rare Diseases
Orphanet Journal of Rare Diseases 医学-医学:研究与实验
CiteScore
6.30
自引率
8.10%
发文量
418
审稿时长
4-8 weeks
期刊介绍: Orphanet Journal of Rare Diseases is an open access, peer-reviewed journal that encompasses all aspects of rare diseases and orphan drugs. The journal publishes high-quality reviews on specific rare diseases. In addition, the journal may consider articles on clinical trial outcome reports, either positive or negative, and articles on public health issues in the field of rare diseases and orphan drugs. The journal does not accept case reports.
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