PROMs, PREMs & Qualitative Research: from design to implementation

Introduction: Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs) are central to person-centred care. PROMs capture outcomes reported by patients –symptoms, quality of life, functional status, and well-being. PREMs focus on experiences with healthcare services, including communication, access, respect, and coordination. Qualitative research adds unique value to the development and use of these indicators by deepening understanding of patient perspectives, identifying gaps, and informing improvement efforts.

Objective: To analyse how qualitative research shapes the design, adaptation, and implementation of PROMs and PREMs in healthcare.

Method: Narrative literature review identifying commonly used PROMs/PREMs and examining qualitative contributions to domain generation, linguistic and cultural refinement, exploration of population heterogeneity, and real-world implementation.

Results: Qualitative methods inform PROMs/PREMs development and use at multiple levels. (1) Interviews and focus groups surface domains that matter most to patients (e.g., pain, emotional burden, treatment side effects). (2) Techniques such as cognitive interviewing and iterative piloting ensure linguistic clarity and cultural appropriateness, making items patient-friendly and context-relevant. (3) Comparative analyses clarify how gender, culture, socioeconomic status context interpretation and experience. (4) During implementation, qualitative inquiry identifies barriers and facilitators to the use of PROMs and PREMs, —such as workload, digital literacy, interoperability, and feedback processes— helping to explain why measures may or may not be applied effectively in practice. (5) Qualitative analysis provides contextual interpretation that adds depth to quantitative findings, helping researchers, clinicians, and policymakers understand the underlying reasons and explains the “why” behind numerical scores.

Conclusions: Qualitative studies are essential for capturing patients’ perceptions of outcomes and experiences with health interventions. They enable co-construction and active patient and public involvement in research, ultimately making science more inclusive, person-centred, and citizen-friendly. Embedding qualitative work throughout the PROM/PREM lifecycle strengthens content validity, enhances cultural adaptation, and supports effective implementation and clinical usefulness.