From patient voices to optimal PROMs: a mixed methods framework for cancer survivorship care

Selecting patient-reported outcome measures (PROMs) that accurately reflect the unmet needs of cancer survivors (CSs) remains a challenge in oncology, as current processes lack a structured methodology. This study aimed to develop and test the feasibility of a replicable, patient-centred framework for PROM selection, ensuring alignment between survivors' lived experiences and standardised outcome measures across diverse healthcare settings.

Our methodology integrated qualitative and quantitative approaches, mapping patient-expressed unmet needs onto the International Classification of Functioning, Disability, and Health (ICF). The process involved three steps: (1) identifying survivors' needs through focus groups, interviews and questionnaires, (2) linking these needs to ICF categories using validated methodologies and (3) systematically evaluating existing PROMs based on their coverage of these categories.

To demonstrate feasibility, we conducted a feasibility study involving 35 CSs and seven caregivers within the Italian healthcare context. Among the 14 PROMs analysed, the Cancer Rehabilitation Evaluation System (CARES) covered 94.3% of ICF-linked needs, emerging as the most suitable option. The framework's adaptability allows clinicians and researchers to identify context-specific PROMs for diverse populations and healthcare systems.

This study provides a robust, evidence-based methodology for optimising PROM selection, bridging the gap between patient narratives and standardised measurement. This feasibility study demonstrates the framework's practical applicability in clinical practice, with potential for broader implementation across diverse healthcare contexts. Its global applicability ensures that survivorship care remains patient-centred, data-driven and contextually relevant.

By facilitating the selection of tailored PROMs, this framework enhances patient-centred survivorship care, ensuring that outcome assessments remain relevant to survivors' experiences and improving care quality across different settings.

ClinicalTrials.gov Identifier: NCT06236373.