Abstract
METHODS
The original study aimed to compare adolescents and young adults (AYAs) using openly accessible OpenSYMPRO with patients aged > 40 years using hospital-based regular SYMPRO. OpenSYMPRO was also accessible to older patients. Due to low recruitment, the planned comparative evaluation was abandoned. Engagement was summarized descriptively. All 20 enrolled participants were invited to provide feedback, and all available interviews and questionnaires were analyzed thematically, irrespective of age.
RESULTS
Of 20 enrolled participants, 18 registered through OpenSYMPRO and 2 through regular SYMPRO. Seven completed > 2 symptom questionnaires, 9 completed 1-2, and 4 completed none. Nine participants provided qualitative feedback through interviews (n = 4) or questionnaires (n = 5), including 7 AYAs and 2 participants outside the AYA age range. Potential barriers included concurrent studies, perceived overlap between studies, forgetting the tool, limited time or cognitive capacity, and limited perceived added value. Some participants found symptom tracking useful. Respondents reported no substantial problems with technical operation, although design-related barriers could not be excluded.
DISCUSSION
Uptake and engagement appeared to be influenced primarily by organizational, communication, and personal factors rather than technical operation. Stronger integration into clinical workflows, person-tailored communication of purpose and added value, active healthcare professional involvement, and attention to potential design barriers warrant further evaluation. Given the small and heterogeneous sample, and limited feedback from non-users and non-participants, findings are hypothesis-generating.
AIM
To explore the real-world uptake and engagement with OpenSYMPRO, a digital symptom-monitoring tool for patients with cancer undergoing systemic therapy, and potential barriers to its use.