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

Abstract

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.