PROMs : patient related or patient centred? A bridge between Patient-Reported Outcome Measures (PROMs) and clinical ethics in the context of a cohort of gynaeco-oncological patients analysed by qualitative semi- structured interviews

Abstract

Background Patient-reported outcome measures (PROMs) are widely used in oncologic care, yet it remains unclear to what extent they capture the depth and contextual meaning of patient experience in gynecologic oncology.

Objective To explore gynecologic oncology patients’ narratives of treatment experience, needs, and psychosocial impacts, and to examine how these narratives align with domains covered by commonly used PROMs.

Methods We conducted semi-structured, in-depth interviews with 20 female participants (31–72 years) across different therapy phases. Interviews were analysed using a constructivist grounded theory approach, including iterative inductive coding and constant comparison. After the inductive category structure stabilized, we conducted a secondary mapping of interview-derived categories to domains represented in commonly used PROM instruments in gynecologic and breast oncology.

Results Participants described treatment effects not only as physical symptoms and functional limitations, but as experiences embedded in identity, autonomy, coping, and relational roles. While PROM domains broadly covered major areas such as physical symptoms, psychological wellbeing, social functioning, body image, and sexual health, the interview narratives repeatedly emphasized meaning, context, and interpersonal dynamics that were insufficiently represented within standardized PROM structures.

Conclusion PROMs are a valuable component of oncologic care and efficiently capture selected domains of patient experience. However, our findings indicate that routinely used PROMs in gynecologic oncology may not adequately capture the depth, context, and meaning of patients’ narratives, particularly regarding identity, relational dynamics, and coping. Integrating PROMs with qualitative approaches may better support individualized, patient-centred care in the context of personalized and precision oncology.