Real-life daily activity: the impact of misbeliefs on quality of life among cancer patients

While side-effects and health-related quality of life (QoL) are routinely assessed in clinical trials, commonly used tools do not measure patients’ ability to maintain normal daily activities. QoL can be severely affected directly by the disease, the treatment side-effects and by personal and societal misconceptions promoting avoidance from activities perceived as dangerous for cancer patients. We examined practices of actively treated patients with cancer. A questionnaire was designed, assessing daily activities (11 items) and dietary limitations (7 items) distributed between October and December 2019 (before the coronavirus pandemic) among patients treated at the Oncology Division of Tel Aviv Sourasky Medical Center. The study population comprised 208 patients who participated in the survey. The majority reported at least one social-environmental avoidance or dietary limitation (136, 65% and 120, 57.7%, respectively), including abstaining from social contact, avoiding pets, public domains, traveling and maintaining dietary constraints. Adoption of these measures was not associated with clinical, demographic factors and treatment type. The major sources guiding restrictions came from advice of non-medical personnel (55.7%), the Internet (7.2%) and personal choice by the patients themselves (24%). Most cancer patients reported compromised daily activities, which are likely attributed to misbeliefs about disease and treatment, and have a deleterious impact on QoL, in its wider sense, namely, the ability to conduct a full and meaningful life. These findings call for the development and implementation of tools examining patients’ real-life activity, beyond side-effects or health-related QoL (HRQoL). We propose this assessment as an integral part in the evaluation of new drugs and technologies and as an additional endpoint in pivotal clinical trials. •Side-effects and HRQoL routinely assessed in clinical trials do not fully measure patients’ maintenance of daily activities.•We developed a questionnaire examining daily practices and implications of misbeliefs among actively treated cancer patients.•Most patients reported compromised daily activities, affecting QoL in its wider sense: conducting a full and meaningful life.•These findings call for the development and implementation of tools examining patients’ real-life activity, beyond HRQoL.•We propose accounting for a more comprehensive assessment of QoL, and patient health care education dispelling misbeliefs