Patients and Health Care Providers Identify Important Outcomes for Research on Pregnancy and Heart Disease.
Patients and Health Care Providers Identify Important Outcomes for Research on Pregnancy and Heart Disease.
复制标题
患者和医疗保健提供者确定了有关妊娠和心脏病研究的重要结果。
DOI：
10.1016/j.cjco.2020.05.010
复制
发表时间：
2020-11
期刊：
影响因子：
--
通讯作者：
D'Souza RD
中科院分区：
文献类型：
--
作者：
Hall C;D'Souza RD
正在制定妊娠期心脏病研究的核心结果集。阐明患者和医疗保健提供者（HCP）的观点是开发这一核心结果集的重要步骤，而引出这些结果是本研究的目标。我们采访了患有心脏病的孕妇，家庭成员和HCP，直到数据饱和。与会者被要求分享经验和观点，并对他们认为重要的成果发表评论。访谈被逐字记录和转录，并使用解释性分析将经验转化为可衡量的成果。根据医学研究成果的分类，这些成果被归类为5个核心成果领域。比较了结局区域内、患者与HCP之间以及访谈与已发表文献之间的结局分布。我们从13名患者和3名家庭成员中获得了17个结局，主要与婴儿的一般健康、先天性异常、心理健康和医疗保健服务有关;从10名HCP中获得了45个结局，主要是临床结局。与参与者访谈相比，已发表文献中的结局更强调临床结局（94% vs 76.5%，P = 0.03），而对生活影响的强调有限（0% vs 17.6%，P < 0.001）。尽管临床结局是已发表的心脏病和妊娠研究的主要焦点，但患者和HCP强调与一般母体和胎儿健康和生命影响相关的结局的重要性，但很少报告。在未来的研究中纳入这些结果对于促进以患者为中心的心脏病孕妇护理至关重要。
A core outcome set for studies on cardiac disease in pregnancy is being developed. Incorporating perspectives of patients and health care providers (HCPs) is an essential step in developing this core outcome set, and eliciting these outcomes is the objective of this study. We interviewed pregnant women with heart disease, family members, and HCPs, until data saturation was attained. Participants were asked to share experiences and perspectives, and comment on outcomes they deemed important. Interviews were recorded and transcribed verbatim, and interpretive analysis was used to translate experiences into measurable outcomes. These were classified under 5 core outcome areas, based on a taxonomy of outcomes for medical research. A comparison of the distribution of outcomes within outcome areas, between patients and HCPs, and between interviews and published literature is presented. We obtained 17 outcomes from 13 patients and 3 family members, mostly related to general wellness of the baby, congenital anomalies, mental health, and health care delivery; and 45 outcomes from 10 HCPs, which were mostly clinical. Outcomes in published literature when compared with participant interviews put greater emphasis on clinical outcomes (94% vs 76.5%, P = 0.03) and limited emphasis on life impact (0% vs 17.6%, P < 0.001). Although clinical outcomes are the main focus of published research in heart disease and pregnancy, patients and HCPs emphasize the importance of outcomes related to general maternal and fetal well-being and life impact, which are seldom reported. Including these outcomes in future studies is essential to facilitating patient-centred care for pregnant women with cardiac disease.
登录
查看更多内容
影响因子：
2.9
作者：
D'Souza, Rohan;Villani, Linda;Javid, Nasrin
通讯作者：
Javid, Nasrin
影响因子：
7.2
作者：
Dodd S;Clarke M;Becker L;Mavergames C;Fish R;Williamson PR
通讯作者：
Williamson PR
影响因子：
15.8
作者：
Kirkham JJ;Davis K;Altman DG;Blazeby JM;Clarke M;Tunis S;Williamson PR
通讯作者：
Williamson PR
DOI：
10.1111/1471-0528.15892
发表时间：
2019-11-01
影响因子：
5.8
作者：
Duffy, J. M. N.;Hirsch, M.;McManus, Richard J.
通讯作者：
McManus, Richard J.
影响因子：
2.5
作者：
Dadouch R;Faheim M;Juando-Prats C;Parsons J;D'Souza R;COSSOPP Investigators
通讯作者：
COSSOPP Investigators