Corbett Gillian, Daly Mandy, Keegan Dylan, Horgan Patricia, Keyes Catriona, Luethe Larissa, Corcoran Siobhan, McAuliffe Fionnuala M
UCD Perinatal Research Centre, UCD School of Medicine, University College Dublin, National Maternity Hospital, Dublin, Ireland.
National Maternity Hospital, Dublin, Ireland.
PLoS One. 2024 Dec 20;19(12):e0312370. doi: 10.1371/journal.pone.0312370. eCollection 2024.
Spontaneous preterm birth (sPTB) has a deep immediate impact on patients but also alters their care and experience in subsequent pregnancies. There is an absence of the pregnant patient's voice in the research surrounding pregnancy at risk of sPTB.
MATERIALS/METHODS: The Preterm Birth Advisory Council was established at the National Maternity Hospital (NMH) in January 2023, to introduce and embed the patient voice in research into sPTB prevention. Council members include patients with lived experience of sPTB, patient advocate representatives and clinicians involved in sPTB preventative care. Topics around sPTB prevention were openly discussed with experts by experience and shared with sPTB advocacy groups. Responses were analysed for themes most important to those with lived experience. Ethical approval was granted by NMH Research Ethics Committee.
In total, seven experts by experience gave their views over the course of a three month period. Six key themes were observed: Clinical Outcomes in Preterm Birth Research. Low priority was placed on the modality, route and duration of interventions. The most important aspect of an intervention is its clinical efficacy. High tolerance thresholds were described in sacrifice for a positive pregnancy outcomePreterm Birth Preventative care as a patient-led care model. While medical and surgical interventions play their role in objectively reducing risk, much of pregnancy care after preterm birth centres on psychological support and continuity of care.Lack of awareness on risk factors for sPTB is an obstacle to timely referral and access to care. Patient experience of preterm birth prevention and timely interventions are improved where risk factor awareness exists.Importance of preconceptual counselling. The unexpected nature of adverse outcome adds additional trauma to the event itself. Anticipation of adverse event can improve sense of control, minimise trauma and increase ability to cope.The partner's experience of pregnancy at risk of preterm birth is largely missing from focus of research and clinical care. Peer-support, digital resources or partner handbooks may be helpful for support persons.Traumatic language included referring to a mid-trimester pregnancy loss or peri-viable preterm birth as a 'miscarriage.' Regarding language around preterm birth, there was no preferred term identified for women with risk factors or experience of preterm birth.
The Preterm Birth Advisory Council places the voice of those impacted by preterm birth at the centre of research into its prevention. The themes identified may guide activities within this research area in local settings and international platforms. It is the council's hope that supported by their work, it will be the patient's voice that rings loudest in research in spontaneous preterm birth prevention.
自发性早产（sPTB）对患者有直接且深刻的影响，同时也会改变她们在后续妊娠中的护理情况和体验。在围绕有sPTB风险的妊娠研究中，缺乏孕妇的声音。
材料/方法：早产咨询委员会于2023年1月在国家妇产医院（NMH）成立，目的是将患者的声音引入到sPTB预防研究中。委员会成员包括有sPTB亲身经历的患者、患者权益代表以及参与sPTB预防护理的临床医生。围绕sPTB预防的主题与有相关经验的专家进行了公开讨论，并与sPTB倡导组织分享。对那些有亲身经历的人认为最重要的主题的回复进行了分析。NMH研究伦理委员会给予了伦理批准。
在为期三个月的时间里，共有七位有相关经验的专家发表了他们的看法。观察到六个关键主题：早产研究中的临床结果。对干预的方式、途径和持续时间的重视程度较低。干预最重要的方面是其临床疗效。为了获得积极的妊娠结局，人们描述了较高的容忍阈值。早产预防护理作为一种以患者为导向的护理模式。虽然医疗和外科干预在客观上降低风险方面发挥着作用，但早产后的许多妊娠护理都集中在心理支持和护理的连续性上。对sPTB风险因素缺乏认识是及时转诊和获得护理的障碍。在存在风险因素意识的情况下，患者对早产预防和及时干预的体验会得到改善。孕前咨询的重要性。不良结局的意外性质给事件本身增加了额外的创伤。对不良事件的预期可以提高控制感、将创伤降至最低并增强应对能力。伴侣在有早产风险的妊娠中的经历在研究和临床护理的重点中基本缺失。同伴支持、数字资源或伴侣手册可能对支持者有帮助。创伤性语言包括将孕中期流产或接近可存活孕周的早产称为“流产”。关于早产相关的语言，对于有风险因素或有早产经历的女性，没有确定首选术语。
早产咨询委员会将早产受影响者的声音置于早产预防研究的中心。确定的主题可能会指导当地和国际平台上该研究领域内的活动。委员会希望在他们工作的支持下，在自发性早产预防研究中最响亮的声音将是患者的声音。
