摘要
囊性纤维化(CF)导致相对较高的医疗消耗。大部分的治疗是在家里进行的。由于缺乏关于非医院护理的数据,我们希望确定CF患者在医院外的护理费用。对两家荷兰医院的73例CF患者(应答率64%,14名儿童和33名成人)进行问卷调查。计算儿童和成人患者每年在以下六种情况下的平均消费和平均费用:非医院医疗护理;国内的帮助;饮食;因CF而旅行;药物治疗;以及家庭、工作或学校的设备和特殊设施。 The average nonhospital costs of care amounted to Pounds 4,641 per child per year (range Pounds 712-13,269) and Pounds 10,242 per adult (range Pounds 1,653-26,571). Nonhospital medical care for children and adults accounted for, respectively, 8 and 5% of these costs, domestic help for 15 and 9%, diet for 10 and 7%, travelling because of CF for 4 and 8%, medication for 63 and 67%, and devices and special facilities at home, work or school for 1 and 4%. Nonhospital costs of care of cystic fibrosis are very high and amount to 50% of the total (medical and nonmedical) lifetime costs of cystic fibrosis.