Gerber Andreas U, Torre Agnieszka Hompanera, Büscher Guido, Stock Stephanie A K, Graf Christine, Schickendantz Sabine, Brockmeier Konrad, Lüngen Markus
Institute for Health Economics and Clinical Epidemiology, University of Cologne, Gleueler Strasse, Cologne, Germany.
Cardiol Young. 2010 Apr;20(2):178-85. doi: 10.1017/S1047951109991995. Epub 2010 Mar 4.
Parents of children with congenital cardiac disease suffer from psychological stress and financial burdens. These costs have not yet been quantified.
In cooperation with paediatricians, social workers, and parents, a questionnaire was devised to calculate direct non-medical and indirect costs. Direct non-medical costs include all costs not directly related to medical services such as transportation. Indirect costs include lost productivity measured in lost income from wages. Parents were retrospectively queried on costs and refunds incurred during the child's first and sixth year of life. The questionnaire was sent out to 198 families with children born between 1980 and 2000. Costs were adjusted for inflation to the year 2006. Children were stratified into five groups according to the severity of their current health status.
Fifty-four families responded and could be included into the analysis (27.7%). Depending on severity, total direct non-medical and indirect costs in the first year of life ranged between an average of euro1654 in children with no or mild (remaining) cardiac defects and an average euro2881 in children with clinically significant (residual/remaining) findings. Mean expenses in the sixth year of life were as low as euro562 (no or mild (remaining) cardiac defects) and as high as euro5213 (potentially life-threatening findings). At both points in time, the highest costs were lost income and transportation; and day care/ babysitting for siblings was third.
Families of children with congenital cardiac disease and major sequelae face direct non-medical and indirect costs adding up to euro3000 per year on average. We should consider compensating families from low socioeconomic backgrounds to minimise under-use of non-medical services of assistance for their children.
先天性心脏病患儿的父母承受着心理压力和经济负担。这些费用尚未得到量化。
与儿科医生、社会工作者及患儿父母合作，设计了一份问卷以计算直接非医疗费用和间接费用。直接非医疗费用包括所有与医疗服务无直接关联的费用，如交通费用。间接费用包括以工资收入损失衡量的生产力损失。对患儿父母进行回顾性询问，了解患儿出生第一年和第六年的费用及退款情况。问卷发放给198个有1980年至2000年间出生孩子的家庭。费用根据通货膨胀率调整至2006年。根据患儿当前健康状况的严重程度将其分为五组。
54个家庭回复并可纳入分析（27.7%）。根据严重程度，出生第一年的直接非医疗费用和间接费用总额，在无或轻度（残余）心脏缺陷患儿中平均为1654欧元，在有临床显著（残余/剩余）症状的患儿中平均为2881欧元。出生第六年的平均费用，低至562欧元（无或轻度（残余）心脏缺陷），高至5213欧元（有潜在生命危险症状）。在这两个时间点，最高费用都是收入损失和交通费用；照顾兄弟姐妹的日托/保姆费用排第三。
患有先天性心脏病及严重后遗症患儿的家庭，平均每年面临的直接非医疗费用和间接费用总计达3000欧元。我们应考虑对社会经济背景较低的家庭给予补偿，以尽量减少其子女非医疗援助服务利用不足的情况。
