Bayen Eléonore, Laigle-Donadey Florence, Prouté Myrtille, Hoang-Xuan Khê, Joël Marie-Eve, Delattre Jean-Yves
Department of Neuro-Rehabilitation, Pitié-Salpêtrière Hospital, Paris, France.
Health Economics Department LEDa-LEGOS, PSL University Paris-Dauphine, Paris, France.
Support Care Cancer. 2017 Jan;25(1):245-253. doi: 10.1007/s00520-016-3397-6. Epub 2016 Sep 13.
Informal caregivers (ICs) provide care and improve the quality of life of patients with malignant brain tumor. We analyze the impact of their involvement on themselves from a triple perspective.
Home-dwelling patients with primary malignant brain tumor underwent a medical examination. ICs burden was evaluated by a self-administered postal questionnaire. Objective burden (Informal Care Time, ICT), subjective burden (Zarit Burden Inventory, ZBI), and financial burden (valuation of lost earnings using the Replacement and Opportunity Cost Methods, RCM, OCM) were evaluated.
ICs (N = 84) were principally women (87 %) and spouses (64 %), of mean age 55 years, who assisted patients of mean age 53 years and with a mean KPS score of 61 (range = 30-90, med = 60). Subjective burden was moderate (mean ZBI = 30). Objective burden was high (mean ICT = 11.7 h/day), mostly consisting of supervision time. Higher subjective and objective burden were associated with poorer functional status (KPS) but not with a higher level of cognitive disorders in multivariate analyses. Other independent associated factors were bladder dysfunction and co-residency for objective burden and working and a poor social network for subjective burden. The 56 working ICs made work arrangements (75 %) that impacted their wages (36 %) and careers (30 %). Financial burden due to uncompensated caregiving hours for Activities of Daily Living had a mean monetary value from Є677(RCM) to Є1683(OCM) per month (i.e., ranging from Є8124 to Є20196 per year).
IC burden is multidimensional. Greater provision of formal care, more IC support programs, and economic interventions targeting IC employment and finances are needed.
非正式照料者为恶性脑肿瘤患者提供照料并改善其生活质量。我们从三个角度分析他们的参与对自身的影响。
对居家的原发性恶性脑肿瘤患者进行医学检查。通过自行填写的邮寄问卷评估非正式照料者的负担。评估客观负担（非正式照料时间，ICT）、主观负担（ Zarit负担量表，ZBI）和经济负担（使用替代成本法和机会成本法评估收入损失，RCM，OCM）。
非正式照料者（N = 84）主要为女性（87%）和配偶（64%），平均年龄55岁，照料平均年龄53岁、平均KPS评分为61分（范围= 30 - 90，中位数= 60）的患者。主观负担为中度（平均ZBI = 30）。客观负担较高（平均ICT = 11.7小时/天），主要由监督时间构成。在多变量分析中，较高的主观和客观负担与较差的功能状态（KPS）相关，但与较高水平的认知障碍无关。其他独立相关因素在客观负担方面为膀胱功能障碍和共同居住，在主观负担方面为工作和不良社会网络。56名有工作的非正式照料者做出了影响其工资（36%）和职业（30%）的工作安排。因日常生活活动无补偿照料时间导致的经济负担，每月平均货币价值从677欧元（RCM）到1683欧元（OCM）（即每年从8124欧元到20196欧元）。
非正式照料者负担具有多维度性。需要提供更多的正式照料、更多的非正式照料者支持项目，以及针对非正式照料者就业和财务的经济干预措施。
