Verhoeven Rosa, Kooi Elisabeth M W, Obermann-Borst Sylvia A, Geurtzen Rosa, Labrie Nanon H M, Verhagen A A Eduard, Hulscher Jan B F
Department of Surgery, Division of Paediatric Surgery, University Medical Centre Groningen, Groningen, The Netherlands
Department of Neonatology, Beatrix Children's Hospital, University Medical Centre Groningen, Groningen, The Netherlands.
BMJ Open. 2024 Dec 9;14(12):e087939. doi: 10.1136/bmjopen-2024-087939.
Necrotising enterocolitis is a devastating gastrointestinal disease predominantly affecting preterm infants. In 40% of cases, its rapid progression renders conservative treatment insufficient, necessitating laparotomy as the sole viable option for survival. However, high perioperative and postoperative mortality rates, along with severe future potential disabilities and suffering, can complicate the decision of whether surgery is still in the infant's best interest. In such cases, palliative care, aimed to minimise suffering, may be considered as an alternative to laparotomy, especially when the infant's expected quality of life and overall prognosis are concerning. Depending on the sociocultural context, parents are increasingly involved in this decision. However, weighing the risks, benefits and uncertainties can be challenging for them. Therefore, we aim to develop a decision support tool using a novel combination of the Delphi technique and Q-methodology. Ultimately, we anticipate that this approach will contribute to improved family-centred care and optimised outcomes.
The first phase of the study aims to identify key factors guiding Dutch parents' decisions between laparotomy and palliative care (decision factors). Using a Delphi process, parents with varying perspectives and experiences will evaluate decision factors found in the literature and those self-suggested. The pertinent set of decision factors is defined during a consensus meeting.During the second phase, parents are asked to compare statements about these decision factors using Q-methodology. A by-person factor analysis of these comparisons will identify different parental decision-making profiles, which allows for formulating advice tailored to those profiles.Ultimately, we will build an online decision support tool which facilitates the classification of parent perspectives. The tool will then provide the parents with the relevant advice. In the last phase of the study, the tool's effectiveness will be evaluated through an online questionnaire, asking parents to imagine using the tool in a real-world scenario.
Ethical approval has been obtained from Central Ethics Review Committee of The University Medical Center Groningen (METc 2023/577, CTc UMCG 153660). Participants will be asked to provide their informed consent for the parts of the study that involve non-anonymous data gathering. Findings will be disseminated through academic journals and conferences. Options for long-term data preservation are under consideration.
坏死性小肠结肠炎是一种主要影响早产儿的毁灭性胃肠道疾病。在40%的病例中，其快速进展使保守治疗不足，剖腹手术成为生存的唯一可行选择。然而，围手术期和术后的高死亡率，以及未来严重的潜在残疾和痛苦，会使手术是否仍符合婴儿最佳利益的决策变得复杂。在这种情况下，旨在减轻痛苦的姑息治疗可被视为剖腹手术的替代方案，尤其是当婴儿的预期生活质量和总体预后令人担忧时。根据社会文化背景，父母越来越多地参与到这一决策中。然而，对他们来说，权衡风险、益处和不确定性可能具有挑战性。因此，我们旨在使用德尔菲技术和Q方法的新颖组合开发一种决策支持工具。最终，我们预计这种方法将有助于改善以家庭为中心的护理并优化结果。
研究的第一阶段旨在确定指导荷兰父母在剖腹手术和姑息治疗之间做出决策的关键因素（决策因素）。通过德尔菲法，具有不同观点和经验的父母将评估文献中发现的决策因素以及他们自己提出的因素。在共识会议期间确定相关的决策因素集。在第二阶段，要求父母使用Q方法比较关于这些决策因素的陈述。对这些比较进行的个人因素分析将识别不同的父母决策模式，从而能够制定针对这些模式的建议。最终，我们将构建一个在线决策支持工具，便于对父母的观点进行分类。然后该工具将为父母提供相关建议。在研究的最后阶段，将通过在线问卷评估该工具的有效性，要求父母想象在现实场景中使用该工具。
已获得格罗宁根大学医学中心中央伦理审查委员会的伦理批准（METc 2023/577，CTc UMCG 153660）。将要求参与者对研究中涉及非匿名数据收集的部分提供知情同意。研究结果将通过学术期刊和会议进行传播。正在考虑长期数据保存的选项。
