目的 调查遗传性大疱性表皮松解症患者（epidermolysis bullosa，EB）主要照护者生活质量现况及其影响因素。方法 采用一般情况调查表、SF-36健康调查量表和照护者负担量表对166名EB患者主要照护者进行调查。结果 EB患者主要照护者SF-36总分为（57.40±17.42）分，其中：躯体健康方面得分为（64.05±18.30）分、心理健康方面得分为（50.98±20.39）分。照护负担与生活质量呈负相关（P＜0.01）。多元线性回归分析显示，伤口护理材料获取便利性、家庭年收入、患者伤口面积占比、每日照护时长和照护负担程度是EB患者主要照护者生活质量的影响因素（均P＜0.05）。结论 EB患者的主要照护者生活质量处于低水平，尤其是伤口护理材料获取不便利、家庭年收入低、EB患者伤口面积较大、照护时长长、照护负担重的照护者，需要医护人员重点关注。

Objective To explore the quality of life among primary caregivers of patients with epidermolysis bullosa and its influencing factors.Methods 166 primary caregivers of patients with epidermolysis bullosa were selected and investigated by using general questionnaire,the MOS Item Short From Health Survey，and Caregiver Burden Inventory.Results The total score of SF-36 for the primary caregivers of EB patients was (57.40±17.42),among which the score of physical health was (64.05±18.30) and the score of psychological health was (50.98±20.39).The burden of care is negatively correlated with quality of life (P＜0.01).Multiple linear regression analysis showed that convenient access to wound care materials,annual household income,patients’ wound area,daily care duration,and the level of care burden were influencing factors on the quality of life of primary caregivers of EB patients (all P＜0.05). Conclusions The primary caregivers of EB patients have a low quality of life,especially those with inconvenient access to wound care materials,low annual household income,patients with large EB wound areas,long care duration,and heavy care burden.This requires focused attention from medical staff.

R473.75

国家自然科学基金（82203949）