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).Conclu-sions 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.
关键词
遗传性大疱性表皮松解症/照护者/照护负担/生活质量/影响因素
Key words
epidermolysis bullosa/caregiver/care burden/quality of life/influencing factor
维普
万方数据