Digital integration of narrative medicine and patient-reported outcome measures to improve understanding of quality of life in metastatic breast cancer: the PERGIQUAL study

Purpose This observational, prospective study aimed to evaluate the feasibility and usefulness of a person-based care (PbC) digital pathway integrating narrative medicine (NM) and electronic patient-reported outcomes measures (e-PROMs) for patients with metastatic breast cancer; the secondary objective was to assess its perceived impact on quality of life (QoL). Patients and methods The study was conducted in Italy from May 2023 to February 2024. Enrolled patients (≥18 years old, life expectancy ≥24 weeks) completed a digital diary with narrative prompts and the EORTC QLQ-C30/+Br23 questionnaire at enrollment and before each treatment cycle. Oncologists reviewed narratives and patient-reported outcomes (PROs), adjusting care accordingly. Feasibility, usefulness, and perceived impact on QoL were assessed through final questionnaires for patients and oncologists. Feasibility was also evaluated via compliance and usefulness through thematic and comparative analysis of narratives and PROs, assessing integration, concordance, and discordance. Results Twenty-nine patients and 6 oncologists participated. Study compliance was high; 21 patients and all oncologists completed the final questionnaires. Patients evaluated the digital diary as usable and effective in communication, while oncologists valued its compatibility with clinical workflow and ability to gather details not captured by ePROMs. Concordance and discordance between narratives and PROs were low (4.8% vs. 0.5%), but they provided complementary information (30.5% vs. 64.2%). PROs were more integrative in “problem” items (78.4% vs. 15.5%), whereas narratives were more informative on “resource” items (79% vs. 18.3%). Ten patients reported improved perceived QoL through the PbC pathway, while 6 found it potentially beneficial. Oncologists recognized its role in personalizing care. Conclusion Integrating NM and ePROMs in the PbC pathway proved feasible and useful, enhancing the perceived impact on QoL and fostering more personalized and empathetic care.