Gao Hongxiang, Jiang Jun, Feng Bei, Guo Aihua, Hong Haifa, Liu Shijian
Department of Cardiothoracic Surgery, Shanghai Children's Medical Center, Shanghai Jiaotong University School of Medicine, Shanghai, China.
Department of Biobank, Pediatric Translational Medicine Institute, Shanghai Children's Medical Center, Shanghai Jiaotong University School of Medicine, Shanghai, China.
BMJ Open. 2018 Oct 17;8(10):e022290. doi: 10.1136/bmjopen-2018-022290.
To assess attitudes and willingness of parents of children with congenital heart disease (CHD) regarding donating biospecimens for future CHD research, and to identify factors associated with biospecimen donation.
Face-to-face cross-sectional survey data were analysed using logistic regression.
Cardiothoracic Surgery Inpatient Department, Shanghai Children's Medical Centre.
Parents of children attending the cardiothoracic surgery inpatient department at Shanghai Children's Medical Center, 1 March-31 December 2016.
Willingness and motivation regarding donating children's biospecimens, and ethical and legal considerations concerning children's future willingness to donate.
Of 550 parents, 508 completed the questionnaire (response rate=92.4%). Overall, 69.1% (n=351) were willing to donate their children's biospecimens for medical research. Multivariate analysis indicated higher education level (college/graduate degree: OR 2.435, 95% CI 1.221 to 4.857, p=0.012; high school: OR 1.827, 95% CI 1.190 to 2.804, p=0.006) and children's hospitalisation history (OR 1.581; 95% CI 1.069 to 2.338, p=0.022) were positively associated with willingness to donate. The most common motivation for donation was potential benefit to other children with CHD (81.2%, n=285). The main barriers to donation were physical discomfort to their children (52.3%, n=54) and concerns about personal privacy (47.1%, n=48). Most parents (86.0%, n=302) wanted to be informed of research results using their children's donated biospecimens, and 34.8% (n=177) believed that children aged 10-18 years had the right to consent independently to research participation.
Nearly 70% of the parents in this study were willing to donate their children's biospecimens for future CHD research. Parents' education level and children's hospitalisation history influenced willingness to donate. Most parents wanted to receive the research results related to their children's biospecimens.
评估先天性心脏病（CHD）患儿家长对于捐赠生物样本用于未来CHD研究的态度和意愿，并确定与生物样本捐赠相关的因素。
采用逻辑回归分析面对面横断面调查数据。
上海儿童医学中心心胸外科住院部。
2016年3月1日至12月31日期间在上海儿童医学中心心胸外科住院部就诊患儿的家长。
捐赠儿童生物样本的意愿和动机，以及关于儿童未来捐赠意愿的伦理和法律考量。
550名家长中，508名完成了问卷调查（回复率=92.4%）。总体而言，69.1%（n=351）的家长愿意捐赠其子女的生物样本用于医学研究。多变量分析表明，较高的教育水平（大专/研究生学历：比值比[OR]2.435，95%置信区间[CI]1.221至4.857，p=0.012；高中学历：OR 1.827，95%CI 1.190至2.804，p=0.006）和孩子的住院史（OR 1.581；95%CI 1.069至2.338，p=0.022）与捐赠意愿呈正相关。最常见的捐赠动机是对其他CHD患儿可能有益（81.2%，n=285）。捐赠的主要障碍是担心给孩子带来身体不适（52.3%，n=54）和对个人隐私的担忧（47.1%，n=48）。大多数家长（86.0%，n=302）希望了解使用其孩子捐赠生物样本的研究结果，34.8%（n=177）认为10至18岁的孩子有权独立同意参与研究。
本研究中近70%的家长愿意捐赠其子女的生物样本用于未来CHD研究。家长的教育水平和孩子的住院史影响捐赠意愿。大多数家长希望收到与其孩子生物样本相关的研究结果。
