Fear of progression in advanced cancer patients with prolonged survival on ongoing cancer treatment in an era of personalized medicine

Fear of progression (FoP) can be described as a reactive, consciously perceived
fear that develops from a serious, potential life-threatening or disabling
disease or its treatment. Dealing with this fear of cancer spreading is
reported as one of the most common unmet needs for help among patients. This
fear manifests itself along a continuum ranging from an appropriate, adequate
response to a clinical problem. It is characterized by chronic worry, excessive
body checking and/or seeking of medical reassurance, avoidance of cancer
reminders, intrusive thoughts and images about progression, and future planning
difficulties. Elevated levels of FoP that become a serious problem, i.e.,
affecting treatment adherence, quality of life or social functioning, are in
need for treatment. Until now, FoP research in oncology has largely been
limited to those who have been curatively treated with conventional cancer
therapies. Hardly any research on fear is done in the growing group of advanced
cancer patients who are on ongoing cancer treatment, like targeted therapies or
immunotherapy, also including patients who are confronted with a rare cancer.
FoP is assumed to be different between advanced cancer patients and cancer
survivors. Iatrogenic factors that are associated with novel therapies are
assumed to contribute to FoP. More specifically, the extended treatment
duration and the monitoring for signs of progression associated with evaluation
of treatment effects, such as imaging, biomarkers and liquid biopsies during
novel therapies, as well as the increased availability of information to
predict individual treatment response or risk of recurrence, are hypothesized
to contribute to high FoP and may contribute to growing numbers of patients
being vulnerable to FoP in future decades.

Until now, no research on FoP has been done in the growing group of incurable
patients with advanced cancer on ongoing treatment. In order to help patients
suffering from elevated levels of FoP, main tasks in research on FoP in this
population are: 1) to investigate, adapt and elaborate on the definition and
measurement of clinical levels of FoP; 2) to better understand the relevance of
illness-related and intrapersonal as well as interpersonal factors for high
FoP. With more knowledge on these topics further development, elaboration and
evaluation of psychological treatments for clinical FoP will be possible.

The aim of this study is to investigate the concept of fear of progression
among advanced incurable cancer patients on
ongoing systemic treatment.

A longitudinal observational study with an estimated 200 patients filling in
monthly (digital) assessments on FoP during one year.

The burden for patients mainly consists of the time it takes to fill in the
questionnaires, and possible emotional burden of sharing their personal
experiences with these questionnaires. If patients experience prolonging
emotional distress as a consequence, they will be offered a consult with one of
the psychologistst from the Medical Psychology department of Radboudumc.