Journal Article

Exploring Perspectives of Patients With Cancer on Implementing Electronic Patient-Reported Outcome Measures to Enhance Patient-Centered Care: Qualitative Study

Kaasa, Stein, Lund, Jo-Åsmund, Øyen, Karianne Røssummoen, Guldhav, Kristin Vassbotn, Skåre, Terese Solvoll, Lundereng, Elias David, Lundeby, Tonje, de Glas, Nienke, Midtbust, May Helen

2025

Overview

Systematic symptom management is a crucial component in patient-centered cancer care. Despite the development of numerous electronic patient-reported outcome measure (ePROM) tools, integrating these tools into clinical practice remains challenging. Engaging key stakeholders, including patients, in the development of ePROM tools is pivotal to fostering the adoption of such tools. As part of an innovation and implementation study aimed at enhancing efficiency and patient-centered care (PCC) through the development of digital PCC pathways, we explored the perspectives of patients with cancer on current clinical practice regarding symptom management and PCC, as well as their needs and preferences related to ePROMs. This study aims to explore the perspectives of patients with cancer on PCC and symptom management, including their experience with current clinical practice and their views on how ePROMs might enhance patient-centered follow-up. A 2-stage qualitative design was used. In stage 1, semistructured individual interviews were conducted to gain an in-depth understanding of patients' experiences with current clinical practice, including perceived challenges and unmet needs. Stage 2 involved structured interviews to further explore patients' perspectives on the potential role of ePROMs in enhancing patient-centered follow-up. A total of 10 patients were included in the study, participating in either or both stages. Two main themes were developed through a reflexive thematic analysis process: (1) symptom management in the shadow of disease-centered care, and (2) ePROMs: bridging holistic care and disease management. Theme 1 highlighted how patients made sense of symptom management within a health care context primarily focused on disease treatment and progression. Their narratives revealed that biomedical concerns often dominated clinical encounters, while patients' broader lived experiences and symptom-related needs were marginalized. Patients shared an understanding that it was their own responsibility to redirect the focus of clinical consultations toward symptoms. While they generally expressed satisfaction with the care received, they also described a sense of unmet needs that remained unaddressed. The second theme explored how patients made sense of the potential role of an ePROM tool in supporting more patient-centered cancer care. Their accounts revealed both perceived barriers and facilitators to its use, shaped by the expectations and needs that contrasted with current clinical practices. Central to this was a belief, emerging through engagement with the conceptual tool's functionalities, that it could enable a more holistic approach to care, extending beyond physical symptom to encompass the lived experience of cancer. Patients often felt personally responsible for ensuring that their symptoms were addressed, indicating shortcomings in follow-up and communication. ePROMs were identified as a promising tool to strengthen PCC by amplifying patient voices and enabling more holistic and responsive follow-up. Integrating ePROMs into routine care may improve symptom visibility, foster shared understanding between patients and health care professionals, and support more equitable care delivery.

• Publisher: JMIR Publications,JMIR Publications Inc
• Subject: Adult / Aged / Cancer / Cancer Self-Management / Clinical outcomes / Data collection / Design / Digital health / Female / Focus groups / Focus Groups and Qualitative Research for Human Factors Research / Health care / Humans / Innovations and Technology in Cancer Care / Interviews / Male / mHealth for Symptom and Disease Monitoring, Chronic Disease Management / Middle Aged / Neoplasms - psychology / Neoplasms - therapy / Oncology / Original Paper / Patient Reported Measures and Outcomes in Participatory Medicine / Patient Reported Outcome Measures / Patient-Centered Care / Patient-Reported Outcome Measures (PROMs) / Qualitative Research / Symptom management