PURPOSE: Patient Reported Outcome Measures PROMs are essential for monitoring health-related quality of life (HRQoL) in pediatric oncology. In the Netherlands, the KLIK PROM portal facilitates structured HRQoL communication between healthcare professionals (HCPs) and families. Currently, HRQoL scores are compared to general population norms. Children with cancer face unique challenges; comparisons with the general population alone may aggravate perceived difficulties and create unnecessary discomfort. An oncology-specific reference would provide appropriate clinical context and improve interpretability. This study evaluated end-user preferences for the inclusion and visualization of such a reference curve within the portal. METHOD: Four focus groups with 13 HCPs, 6 patient interviews, and 12 interviews with 15 parents (including three interviews with both parents) were conducted for this qualitative study. Participants discussed preferences for adding and visualizing an oncology-specific reference curve. NVIVO was used to code transcripts and support thematic analysis. RESULTS: All end-users, except three parents, valued the integration of an oncology-specific reference curve. Three major themes emerged regarding visualization preferences: (1) Normalization: Most participants preferred focusing on normal outcomes, with graphs showing a broad range of - 2 to + 2 SD in a neutral color (e.g. blue).; (2) Deficit-focused framing: end-users opposed overemphasizing deviations (e.g. the potential emotional impact of using traffic light colors); (3) Customization: end-users favored a switch option to tailor curves to patients' needs. CONCLUSION: End-users preferred a customizable oncology-specific reference curve enabling fair peer comparison without distressing visuals. Future implementation should focus on training HCPs to support patient-centered communicate of the new dashboard in clinical practice.
Alkirawan et al. (Thu,) studied this question.