Towards a patient-driven approach to adverse events of targeted agents in oncology

Abstract

This thesis presents three notable findings: the voice of

the patient is inconsequently incorporated in scientific research regarding

adverse events; available instruments may be of limited value for approaching

targeted therapy-associated mucocutaneous adverse events; and available knowledge about a patient-driven approach to adverse events is not broadly incorporated in research and clinical care. The voice of the patient is inconsequently incorporated in scientific research and the healthcare-professional plays the central role in adverse event diagnosis and management. The incidence of the adverse events is mainly measured by healthcare-professionals with suboptimal scales. As a result there may be underreporting of adverse events. In addition, the non-validated CTCAE scoring system for the grading of the adverse events is most commonly used while more precise grading instruments are available. Currently, most adverse events grading is performed by healthcare-professionals rather than by patients. The work in this thesis lead to recommendations to develop collaboration with patients. The conceptual co-care model of a patient-driven approach to adverse events of targeted agents in oncology may be complemented with a 3-part adverse event assessment and grading instrument, evidence based adverse event treatment guidelines, and obligated educational programs on the adverse events core competencies, and applied.