Hancock Hayley S, Pituch Ken, Uzark Karen, Bhat Priya, Fifer Carly, Silveira Maria, Yu Sunkyung, Welch Suzanne, Donohue Janet, Lowery Ray, Aiyagari Ranjit
1Department of Pediatrics,Division of Pediatric Cardiology,Ward Family Heart Center,Children's Mercy Kansas City,Missouri,United States of America.
2Department of Pediatrics,Palliative Care,University of Michigan,Ann Arbor,Michigan,United States of America.
Cardiol Young. 2018 Apr;28(4):561-570. doi: 10.1017/S1047951117002761. Epub 2018 Jan 10.
Children with single-ventricle disease experience high mortality and complex care. In other life-limiting childhood illnesses, paediatric palliative care may mitigate maternal stress. We hypothesised that early palliative care in the single-ventricle population may have the same benefit for mothers. In this pilot randomised trial of early palliative care, mothers of infants with prenatal single-ventricle diagnoses completed surveys measuring depression, anxiety, coping, and quality of life at a prenatal visit and neonatal discharge. Infants were randomised to receive early palliative care - structured evaluation, psychosocial/spiritual, and communication support before surgery - or standard care. Among 56 eligible mothers, 40 enrolled and completed baseline surveys; 38 neonates were randomised, 18 early palliative care and 20 standard care; and 34 postnatal surveys were completed. Baseline Beck Depression Inventory-II and State-Trait Anxiety Index scores exceeded normal pregnant sample scores (mean 13.76±8.46 versus 7.0±5.0 and 46.34±12.59 versus 29.8±6.35, respectively; p=0.0001); there were no significant differences between study groups. The early palliative care group had a decrease in prenatal to postnatal State-Trait Anxiety Index scores (-7.6 versus 0.3 in standard care, p=0.02), higher postnatal Brief Cope Inventory positive reframing scores (p=0.03), and a positive change in PedsQL Family Impact Module communication and family relationships scores (effect size 0.46 and 0.41, respectively). In conclusion, these data show that mothers of infants with single-ventricle disease experience significant depression and anxiety prenatally. Early palliative care resulted in decreased maternal anxiety, improved maternal positive reframing, and improved communication and family relationships.
患有单心室疾病的儿童死亡率高且护理复杂。在其他危及生命的儿童疾病中，儿科姑息治疗可能会减轻母亲的压力。我们假设，对单心室患儿群体进行早期姑息治疗可能会给母亲带来同样的益处。在这项早期姑息治疗的试点随机试验中，产前被诊断为单心室的婴儿的母亲在产前检查和新生儿出院时完成了测量抑郁、焦虑、应对方式和生活质量的调查。婴儿被随机分为两组，一组接受早期姑息治疗（手术前进行结构化评估、心理社会/精神支持和沟通支持），另一组接受标准护理。在56名符合条件的母亲中，40名登记并完成了基线调查；38名新生儿被随机分组，18名接受早期姑息治疗，20名接受标准护理；34份产后调查问卷被完成。基线贝克抑郁量表-II和状态-特质焦虑指数得分超过了正常怀孕样本得分（分别为13.76±8.46对7.0±5.0以及46.34±12.59对29.8±6.35；p = 0.0001）；研究组之间没有显著差异。早期姑息治疗组从产前到产后状态-特质焦虑指数得分有所下降（标准护理组为-7.6对0.3，p = 0.02），产后简短应对量表积极重新评价得分更高（p = 0.03），儿科生活质量量表家庭影响模块沟通和家庭关系得分有积极变化（效应大小分别为0.46和0.41）。总之，这些数据表明，患有单心室疾病婴儿的母亲在产前经历了显著的抑郁和焦虑。早期姑息治疗导致母亲焦虑减轻、积极重新评价能力提高以及沟通和家庭关系改善。
