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新冠疫情期间13个月内患有罕见疾病的成年人的抑郁和焦虑轨迹。

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

作者信息

Halsøy Øyvind, Orm Stian, Cogo-Moreira Hugo, Silverman Wendy K, Fjermestad Krister

机构信息

Frambu Resource Center for Rare Disorders, Siggerud, Norway.

Department of Psychology, University of Oslo, Oslo, Norway.

出版信息

Orphanet J Rare Dis. 2025 Mar 20;20(1):138. doi: 10.1186/s13023-025-03633-3.

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.

摘要

背景

患有罕见疾病的成年人除了有身体症状外,还面临多种心理社会风险因素,包括生活质量受损、社会隔离、孤独和心理健康问题。在新冠疫情期间,这些风险因素被放大,当时医疗预约以及社会/职业活动减少或取消。目前缺乏对这一人群随时间变化的纵向数据跟踪,使得长期后果尚不确定。

方法

在挪威新冠疫情期间的13个月里,我们对58名年龄在19岁至71岁之间(平均年龄M = 45.1岁,标准差SD = 12.6)的患有罕见疾病的成年人进行了月度调查。我们使用霍普金斯症状清单-5来测量焦虑和抑郁症状。使用冠状病毒焦虑量表来测量对新冠的恐惧。我们采用一级为重复测量、二级为个体的多层次增长曲线模型,研究了这13个月期间的心理健康和对新冠的恐惧轨迹。为了说明这13个月期间政府限制措施的差异,我们使用了牛津新冠疫情政府应对追踪器的严格指数。

结果

增长模型表明,在13个月里,焦虑和抑郁水平保持稳定,但与现有人口数据相比有所升高,且不受疫情限制的影响。对新冠的恐惧程度与焦虑和抑郁症状水平显著相关。

结论

当前研究发现,在整个疫情期间,患有罕见疾病的人的心理健康症状轨迹呈现升高且稳定的状态。这凸显了调查疫情对患有罕见疾病的个体心理健康的长期影响的必要性。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a935/11924719/30392ae07d47/13023_2025_3633_Fig1_HTML.jpg

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