J Pediatr Health Care. 2019 Jul-Aug;33(4):437-445. doi: 10.1016/j.pedhc.2018.12.003. Epub 2019 Mar 1.
The purpose of this study was to evaluate stress, depressive symptoms, and quality of life (QOL) among caregivers of children with osteogenesis imperfecta (OI) and to determine if associations exist with patient disease-related characteristics.
Psychosocial outcomes were evaluated in 33 caregivers of 31 patients with OI using the Pediatric Inventory for Parents (assessing stress), PedsQL Family Impact Module (assessing QOL), and Center for Epidemiologic Studies Depression Scale (assessing depressive symptoms).
Higher levels of patient pain and lower patient physical functioning were significantly associated with both higher caregiver stress and poorer QOL (p < .05). Center for Epidemiologic Studies Depression Scale scores were not associated with patient pain or physical functioning.
Parents caring for children with OI with higher levels of pain and/or lower physical functioning are at higher risk of suffering from increased stress and poorer QOL. Interventions should be developed to screen for and target these at-risk caregiver groups with resources and support.
本研究旨在评估成骨不全症(OI)患儿照顾者的压力、抑郁症状和生活质量(QOL),并确定这些结果与患者疾病相关特征之间是否存在关联。
使用父母儿科生活质量量表(评估压力)、儿科生活质量量表家庭影响模块(评估 QOL)和流行病学研究中心抑郁量表(评估抑郁症状)评估 31 例 OI 患儿的 33 名照顾者的心理社会结局。
患者疼痛程度较高和身体机能较低与照顾者压力较大和 QOL 较差显著相关(p <.05)。流行病学研究中心抑郁量表评分与患者疼痛或身体机能无相关性。
照顾患有更高程度疼痛和/或身体机能较低的 OI 患儿的父母,面临更大的压力和较差的 QOL 的风险更高。应制定干预措施,筛查和针对这些高危照顾者群体提供资源和支持。