Perceived control is significantly associated with psychological adaptation in individuals with known or suspected inborn errors of immunity.

IF 1.5 Q4 GENETICS & HEREDITY
Journal of Community Genetics Pub Date : 2023-12-01 Epub Date: 2023-09-15 DOI:10.1007/s12687-023-00670-y
Michael Setzer, Jia Yan, Lori Erby, Morgan Similuk
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引用次数: 0

Abstract

Inborn errors of immunity (IEIs) are rare genetic disorders characterized by increased susceptibility to infection and immune system dysregulation. Despite the significant physical toll of IEIs, there is less information on clinical and patient-reported biopsychosocial outcomes and how these individuals psychologically adapt. We invited adults with IEIs or suspected IEIs (sIEIs) enrolled on a protocol at the National Institutes of Health to complete a cross-sectional survey measuring patient-reported biopsychosocial outcomes, psychological adaptation, and perceived control. We received responses from 312 individuals. Levels of adaptation to illness were similar to previously published cohorts of individuals with chronic health conditions. Participants reported significantly increased levels of anxiety, pain, sleep disturbance, and fatigue and significantly lower levels of physical functioning compared to the general population (p < 0.05). Multiple linear regression analysis indicated that perceived present control was significantly positively associated with adaptation (β = 0.26, p < 0.05). We found that perceived present control was significantly associated with psychological adaptation. Individuals with sIEIs in our sample struggled with poorer biopsychosocial outcomes than the general population, although these may not ultimately be directly related to psychological adaptation. Interventions to increase perceived control may be beneficial to this patient population. Clinicians should also consider screening and management for psychological and physical concerns including anxiety, depression, sleep disturbance, pain, and fatigue.

感知控制与已知或疑似先天性免疫错误患者的心理适应密切相关。
先天性免疫错误(IEIs)是一种罕见的遗传疾病,其特点是对感染的易感性增加和免疫系统失调。尽管先天性免疫错误会给患者造成严重的身体伤害,但有关临床和患者报告的生物心理社会结果以及这些患者的心理适应情况的信息却较少。我们邀请在美国国立卫生研究院接受治疗的成人 IEIs 或疑似 IEIs(sIEIs)患者完成一项横断面调查,测量患者报告的生物心理社会结果、心理适应性和感知控制。我们收到了 312 人的回复。患者对疾病的适应程度与之前公布的慢性病患者群体相似。与普通人群相比,参与者报告的焦虑、疼痛、睡眠障碍和疲劳程度明显增加,身体机能水平明显降低(P<0.05)。
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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
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