OBJECTIVES: Disease progression and poor prognosis in HR-MDS create an urgent need for interventions to improve the patient care experience (PCE) in this vulnerable population. Patient-centric evidence-based solutions in conjunction with emerging therapies can help advance overall care and improve outcomes. The objective of this study was to conduct an SLR of PCC status quo in HR-MDS and identify opportunities for accelerating the integration of evidence into practice towards optimizing HR-MDS PCE.

METHODS: A global SLR was conducted by cross-referencing MDS/HR-MDS with PCC terms, including patient experience, engagement, journey, education, activation, preference, and satisfaction; patient-centered outcomes; shared decision-making (SDM); quality of care; disparities in/access to treatment; patient-reported outcomes (PROs); health-related quality of life (HRQOL); unmet needs; and caregiver experiences. A search of articles published in English (2017-2022) was conducted in PubMed, Embase, and Cochrane Collaboration, following PRISMA guidelines.

RESULTS: 59 MDS articles (45 empirical, 14 reviews) met the study inclusion criteria. Of these, 14 empirical and 10 review articles discussed HR-MDS, and 32 discussed acute myeloid leukemia and/or MDS. Identified themes fell into 2 categories: (1) disparities in care and (2) fatigue, frailty/HRQOL, and the need for patient-centered SDM. Two abstracts presented initial content-validity findings for 2 new HR-MDS PROs. Disconcordance was reported between patient and physician treatment goals, with some considering patient views unimportant. Patients with HR-MDS desired to make informed decisions optimizing quantity vs quality of life.

CONCLUSIONS: With new treatments potentially on the horizon for HR-MDS, a call to action is timely to address the overall lack of empirical PCE data. PCC presents critical opportunities for integration of evidence-based solutions 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 or HRQOL, and including patients as active participants.