Developing a Two-Sided Decision Box to Facilitate Shared Decision-Making for Switching From Conventional to Pharmacokinetic-Tailored Prophylaxis in Haemophilia.

IF 3 2区 医学 Q2 HEMATOLOGY
Haemophilia Pub Date : 2025-06-29 DOI:10.1111/hae.70072
Arun Keepanasseril, Athena Mancini, Megan S Lowe, Noella Noronha, Alfonso Iorio
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Abstract

Introduction: Decision-making in haemophilia is challenging due to the small evidence base, disease heterogeneity, and inter-patient variability. Shared decision-making (SDM) supports patient-clinician decisions.

Aim: Creation of a two-sided decision box facilitating SDM for haemophilia patients switching from conventional (weight-based) to pharmacokinetic driven individualized prophylaxis.

Methods: We developed an SDM tool as suggested by Giguere et al. A stakeholder discussion with haemophilia treaters and patients identified goals, burden, values and preferences. Benefits and harms of key questions were described with a common metric and base. A systematic review identified relevant evidence. PubMed, Medline, Embase, CINAHL, Cochrane Reviews and Cochrane Trials were searched from inception to June 2022. Original articles reporting switches from conventional to individualized prophylaxis within the same product class were included. Evidence from the review and discussion guided the design of the decision box. Feedback informed multiple iterations before the final version.

Results: A total of 569 titles and abstracts were screened, yielding 88 full texts. Eight studies met inclusion criteria: six reported on bleeding rates, four on dosing interval, three on factor consumption, three on quality of life, two on adherence, and two on costs. One study recommended SDM for tailored prophylaxis. Discussions unanimously suggested decision aids to facilitate the choice to switch to tailored prophylaxis. Clinicians highlighted the need for evidence on treatment individualization, while patients valued viewing relevant examples.

Conclusion: Creating decision tools for haemophilia is challenging due to low quantity and quality of evidence. Our decision box is ready for use with careful application of clinical judgement.

开发一个双向决策盒,促进血友病从传统预防转向药代动力学定制预防的共同决策。
由于证据基础小、疾病异质性和患者间可变性,血友病的决策具有挑战性。共享决策(SDM)支持患者-临床决策。目的:创建一个双面决策盒,促进血友病患者从传统(基于体重)转向药代动力学驱动的个体化预防的SDM。方法:我们根据Giguere等人的建议开发了SDM工具。与血友病治疗者和患者的利益攸关方讨论确定了目标、负担、价值观和偏好。用一个共同的度量标准和基准来描述关键问题的利弊。系统评价确定了相关证据。PubMed, Medline, Embase, CINAHL, Cochrane Reviews和Cochrane Trials从成立到2022年6月进行了检索。在同一产品类别中,报告从常规到个体化预防的转换的原始文章被纳入。来自审查和讨论的证据指导了决策框的设计。在最终版本之前,反馈通知了多次迭代。结果:共筛选题目及摘要569篇,获得全文88篇。8项研究符合纳入标准:6项关于出血率,4项关于给药间隔,3项关于因素消耗,3项关于生活质量,2项关于依从性,2项关于成本。一项研究推荐SDM用于量身定制的预防。讨论一致建议提供决策辅助,以促进转向量身定制预防的选择。临床医生强调需要证据的治疗个体化,而患者重视观看相关的例子。结论:由于证据的数量和质量较低,为血友病创建决策工具具有挑战性。我们的决策箱已经准备好了,可以仔细应用临床判断。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Haemophilia
Haemophilia 医学-血液学
CiteScore
6.50
自引率
28.20%
发文量
226
审稿时长
3-6 weeks
期刊介绍: Haemophilia is an international journal dedicated to the exchange of information regarding the comprehensive care of haemophilia. The Journal contains review articles, original scientific papers and case reports related to haemophilia care, with frequent supplements. Subjects covered include: clotting factor deficiencies, both inherited and acquired: haemophilia A, B, von Willebrand''s disease, deficiencies of factor V, VII, X and XI replacement therapy for clotting factor deficiencies component therapy in the developing world transfusion transmitted disease haemophilia care and paediatrics, orthopaedics, gynaecology and obstetrics nursing laboratory diagnosis carrier detection psycho-social concerns economic issues audit inherited platelet disorders.
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