骨髓增生异常综合征中以患者为中心的护理：全球系统性文献回顾与差距分析

IF 2.1 4区医学 Q3 HEMATOLOGY

Leukemia research Pub Date : 2024-09-21 DOI:10.1016/j.leukres.2024.107592

Edward P. Armstrong , Duska M. Franic , Daniel C. Malone , Patrick Mellors , Sissi V. Pham , Cristina Masseria , Lorie Mody , Cosmina Hogea

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引用次数: 0

摘要

背景高危（HR）骨髓增生异常综合征（MDS）的疾病进展和不良预后导致迫切需要采取干预措施来改善这一脆弱人群的患者护理体验。以患者为中心的医生支持策略与新兴疗法相结合，有助于推进整体护理并改善预后。本研究的目的是评估在治疗 HR-MDS 过程中以患者为中心的护理（PCC），并确定制定策略的机会，以弥补护理差距，实现最佳的患者护理体验。方法根据系统性综述和荟萃分析首选报告项目（PRISMA）指南，使用 PubMed、Embase 和 Cochrane Collaboration 数据库（2017-2022 年），将 MDS/HR-MDS 与 PCC 术语交叉引用，进行了全球系统性文献综述（SLR）。其中，6 篇经验性文章侧重于 HR-MDS 群体，而没有一篇综述文章侧重于 HR-MDS 群体。确定的主题分为两类：与健康相关的生活质量（HRQoL）和差异。根据文献中的发现，对 HRQoL 进行了进一步分类，包括患者报告结果 (PRO)、疲劳/虚弱以及患者/偏好/治疗决定/共同决策 (SDM) 等分组。以患者为中心的方法提供了将医生支持的策略与更有效的一线疗法相结合的重要机会，有助于优化 HR-MDS 患者的治疗过程，并通过减轻患者/护理人员的负担、符合并尊重患者的偏好以及让患者积极参与治疗，确保获得有意义的治疗结果。

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Patient-centric care in myelodysplastic syndromes: A global systematic literature review and gap analysis

Background

Disease progression and poor prognosis in higher-risk (HR) myelodysplastic syndrome (MDS) create an urgent need for interventions to improve the patient care experience in this vulnerable population. Patient-centric physician-supported strategies in conjunction with emerging therapies can help advance overall care and improve outcomes. The objective of this study was to evaluate patient-centric care (PCC) in the treatment of HR-MDS and identify opportunities to develop strategies to address care gaps for an optimal patient care experience.

Methods

A global systematic literature review (SLR) was conducted by cross-referencing MDS/HR-MDS with PCC terms, using PubMed, Embase, and Cochrane Collaboration databases (2017–2022) in accordance with Preferred Reporting Items for Systematic Review and Meta-Analyses (PRISMA) guidelines.

Results

In all, 59 MDS articles (45 empirical, 14 reviews) met the study inclusion criteria. Of these, 6 empirical articles focused on the HR-MDS population while none of the reviews did. Identified themes fell into 2 categories: health-related quality of life (HRQoL) and disparities. HRQoL was further categorized based on findings in the literature to include groupings of patient-reported outcomes (PROs), fatigue/frailty, and patient/preferences/treatment decisions/shared decision making (SDM).

Conclusions

With new treatments potentially on the horizon for HR-MDS, a call to action is timely to address the overall lack of empirical PCC data. The patient-centric approach presents critical opportunities for integration of physician-supported strategies with more effective first-line therapies to help optimize the journey of patients with HR-MDS and ensure meaningful outcomes by reducing patient/caregiver burden, aligning with and respecting patient preferences, and including patients as active participants in their treatment.

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来源期刊

Leukemia research 医学-血液学

CiteScore

4.00

自引率

3.70%

发文量

259

审稿时长

1 months

期刊介绍： Leukemia Research an international journal which brings comprehensive and current information to all health care professionals involved in basic and applied clinical research in hematological malignancies. The editors encourage the submission of articles relevant to hematological malignancies. The Journal scope includes reporting studies of cellular and molecular biology, genetics, immunology, epidemiology, clinical evaluation, and therapy of these diseases.