Pregnancy in women with congenital physical disabilities: Risk factors, birth outcomes, and mediation

在过去，大多数先天畸形患者的平均寿命已经大大提高。 几十年，使大多数人能够活过生殖年限。因为身体上出现了一个 残疾通常不会影响生育或对家庭的渴望，重要的是了解 在受影响的妇女中怀孕。有证据表明，对残疾有不同定义的女性 有可能生出低出生体重或早产的婴儿。现有的有限研究表明， 这些分娩结局的相关危险因素往往在患有不同疾病的孕妇中更为常见 与一般人口相比，残疾人的比例更高。例如，吸烟、饮酒和肥胖 增加不良结局的风险，在患有以下疾病的孕妇中似乎更高 残疾人士。然而，到目前为止，还没有研究过怀孕暴露与不良分娩的关系。 在肢体残疾妇女中的结果。在育龄妇女中，肢体残疾最多 通常源于先天性肌肉和神经肌肉缺陷(CMND)，定义为脊柱裂，大脑 瘫痪、肌营养不良和肢体畸形(肌挛缩、缺失或缩短)。行动不便 和灵巧会影响日常生活活动，并导致慢性疼痛、睡眠障碍和 心理社会问题。治疗这些症状所需的药物，以及其他行为应对 机制，可能与出生结局有关，进一步提高了研究妊娠过程的必要性 以及受CMND影响的妇女的生育结局。本研究将利用丰富的数据资源-- 波士顿大学斯隆流行病学中心出生缺陷研究。从1976年到2015年，超过6.8万名母亲 有先天畸形和没有先天畸形的婴儿被问到关于一系列事件的详细问题 和孕期暴露，以确定出生缺陷的风险因素。女人都是 特别询问他们是否患有先天性脊柱裂或大脑、头部、脊柱、脊髓的任何异常， 肌肉、骨骼、手臂或腿。这项研究将比较132名被确认为患有 对528名未受影响的妇女进行以下怀孕暴露的CMND调查：吸烟、饮酒、怀孕前 妊娠体重指数、维生素补充剂、肾脏/膀胱感染、止痛药、睡眠 药物和精神活性药物。常见不良分娩结局的比较将包括 早产、低出生体重和巨大儿。此外，调解分析将衡量 CMND与分娩结局之间的关联是通过妊娠暴露而调节的。一个 据估计，有21.2万名美国育龄妇女患有CMND，怀孕可能需要特殊的 服务。有必要了解先天性心脏病妇女的妊娠过程和结局。 将残疾作为确保最佳护理和风险预防的一个步骤。这个项目利用了 为此目的提供有价值的信息。

The average lifespan of individuals born with most congenital malformations has vastly improved in the past decades, allowing the majority to survive through the reproductive years. Because the presence of a physical disability typically does not affect fertility or the desire for a family, it is important to understand the course of pregnancy among affected women. Evidence shows that women with varying definitions of disability are more likely to have babies born with low birth weights or prematurely. The limited research available suggests that relevant risk factors for these birth outcomes tend to be more common in pregnant women with varying disabilities compare to the general population. For example, cigarette smoking, alcohol drinking, and obesity increase risks of adverse outcomes and appear to be disproportionately higher in pregnant women with disabilities. However no study to date has examined pregnancy exposures in relation to adverse birth outcomes among women with physical disabilities. In women of childbearing ages, physical disabilities most often stem from congenital muscular and neuromuscular defects (cMND), defined as spina bifida, cerebral palsy, muscular dystrophy, and limb anomalies (contractures, missing or shortened). Impairments in mobility and dexterity can impact activities of daily living and result in chronic pain, sleep disturbances, and psychosocial problems. Medications needed for the treatment of these symptoms, and other behavioral coping mechanisms, may be associated with birth outcomes, raising further the need to study the course of pregnancy and birth outcomes among cMND-affected women. This study will take advantage of rich data resource - the Boston University Slone Epidemiology Center Birth Defects Study. From 1976 to 2015, over 68,000 mothers of babies born with and without congenital anomalies were asked detailed questions about a range of events and exposures during pregnancy for the purpose of identifying risk factors for birth defects. Women were specifically asked if they were born with spina bifida or any anomalies of the brain, head, spine, spinal cord, muscles, bones, arms, or legs. This study will compare the 132 women who were identified as having a cMND to 528 unaffected women for the following pregnancy exposures: cigarette smoking, alcohol intake, pre- pregnancy body mass index, vitamin supplementation, kidney/bladder infection, pain medications, sleep medications, and psychoactive medications. Comparisons of common adverse birth outcomes will include premature birth, low birth weight, and macrosomia. In addition, mediation analyses will measure the amount of an association between cMND and birth outcomes that is mediated through pregnancy exposures. An estimated 212,000 US women of childbearing ages have a cMND, for whom pregnancy may require special services. It is necessary to understand the course of pregnancy and outcomes among women with congenital physical disabilities as a step toward ensuring optimal care and risk prevention. This project takes advantage of a unique data resource to provide valuable information for this purpose.