What matters most early in the cancer trajectory: patient concerns and priorities in pancreatic and lung cancer (BetterEveryDay trial).

PURPOSE: Patients with advanced pancreatic or lung cancer face substantial physical, psychological, and existential challenges. While symptom burden is well documented, less is known about how patients articulate their concerns and priorities during palliative oncological treatment. This study explored patient-reported concerns, priorities, and preferred discussion topics among patients with advanced pancreatic or lung cancer receiving first-line systemic therapy.

METHODS

This qualitative exploratory study draws on data from the BetterEveryDay feasibility study, which evaluated a supportive digital application with integrated patient-reported outcomes. Over 12 weeks, participants reported symptoms and side effects and answered three open-ended questions on a weekly basis. Data were analyzed using thematic analysis and supplemented with frequency analysis.

RESULTS

Of the 31 participants enrolled, 27 provided qualitative data. Thematic analysis identified three themes related to concerns, four themes related to priorities, and three themes related to preferred discussion topics. Participants emphasized maintaining a sense of normality and identity as central priorities. Family relationships, everyday functioning, and independence emerged as key sources of meaning, while physical symptoms, uncertainty, and relational concerns were closely connected to existential reflections. Responses captured concerns extending beyond symptom burden and highlighted topics participants wished to address during consultations.

CONCLUSIONS

The findings suggest that integrating open-ended questions into digital patient-reported outcome platforms may help healthcare professionals identify patients' broader priorities, facilitate more person-centered consultations and shared decision-making, and ensure that supportive and palliative care is better aligned with individual needs.

CLINICAL TRIALS REGISTER: NCT04611867 (BetterEveryDay).