Department of Pediatric Allergy and Immunology, Basaksehir Cam and Sakura City Hospital, University of Health Sciences, Istanbul, Turkey.
Department of Child Development, Faculty of Health Sciences, İstanbul Gelisim University, Istanbul, Turkey.
Pediatr Allergy Immunol. 2024 Jan;35(1):e14068. doi: 10.1111/pai.14068.
Primary immune deficiencies (PID) encompasses genetic disorders that result in recurrent infections and immune dysregulation, often increasing the risk of malignancies. The aim of this study is to determine the quality of life, depression, and anxiety in parents of children with PID.
Various validated assessment tools, including the Beck Depression Inventory (BDI), State and Trait Anxiety Inventory (STAI), the 36-item Short Form Survey (SF-36), and a demographic form, were employed to gather data from 85 parents of 64 PID patients and 85 parents of 75 healthy children.
The findings reveal that parents of PID patients exhibited higher BDI, STAI-S, STAI-T, and fatigue subdomain of SF-36 (p = .013, p = .013, p = .027, p = .000). Both parents had lower energy levels than the normal population, but mothers experienced higher levels of anxiety and depression. PID mothers' had higher scores than fathers of PID patients with healthy children in BDI, STAI-S, and STAI-T (p = .002, p = .010, p = .001). Mothers of PID patients reported lower scores in RLEP, E/F, EWB, P, and GH compared to fathers (p = .009, p = .005, p = .034, p = .001, p = .003). Additionally, the study found that STAI-T influenced all subdimensions of HRQOL. These results highlight the substantial emotional and psychological burden placed on parents caring for children with PID.
The study underscores the importance of supporting caregivers to enhance the overall well-being of both parents and children with PID. Such support can potentially alleviate depression and anxiety levels among parents, ultimately improving their quality of life and aiding in the management of children with PID.
原发性免疫缺陷病(PID)涵盖了导致反复感染和免疫失调的遗传疾病,这通常会增加恶性肿瘤的风险。本研究旨在确定 PID 患儿父母的生活质量、抑郁和焦虑情况。
使用各种经过验证的评估工具,包括贝克抑郁量表(BDI)、状态-特质焦虑量表(STAI)、36 项简明健康调查问卷(SF-36)和人口统计学表格,从 64 名 PID 患儿的 85 位父母和 75 名健康儿童的 85 位父母中收集数据。
研究结果表明,PID 患儿的父母表现出更高的 BDI、STAI-S、STAI-T 和 SF-36 的疲劳子量表得分(p=.013、p=.013、p=.027、p=.000)。父母双方的能量水平均低于普通人群,但母亲表现出更高的焦虑和抑郁水平。PID 患儿的母亲在 BDI、STAI-S 和 STAI-T 上的得分均高于 PID 患儿健康儿童的父亲(p=.002、p=.010、p=.001)。PID 患儿的母亲在 RLEP、E/F、EWB、P 和 GH 上的得分均低于父亲(p=.009、p=.005、p=.034、p=.001、p=.003)。此外,研究发现 STAI-T 影响 HRQOL 的所有子维度。这些结果突出表明,照顾 PID 患儿的父母承受着巨大的情感和心理负担。
本研究强调了支持照顾者的重要性,以提高 PID 患儿父母和儿童的整体幸福感。这种支持可能会降低父母的抑郁和焦虑水平,最终改善他们的生活质量,并有助于 PID 患儿的管理。