Real-world behavioral practices of cancer patients: time to shift from health related-QoL to real-life-QoL

Abstract

Abstract Background Health-related quality of life (HR-QoL) is an assessments tool commonly used as an endpoint in clinical trials. While it evaluates the presence of various symptoms, it does not measure patients’ ability to maintain normal daily activities during cancer therapy. We designed a real-life quality of life (RL-QoL) tool, validated among a cohort of actively treated cancer patients at a single cancer center prior to the COVID-19 pandemic. Using this tool we discovered that most patients reported compromised daily activities. In this study we aimed to examine RL-QoL in an international cohort of patients. Methods A locally validated questionnaire was distributed internationally using the Belong.life digital health platform. We examined real-world patient reported practices, provided by patients voluntarily and anonymously. The survey consisted of demographic, clinical, behavioral parameters and sources guiding and supporting patient practices. Independent clinical and demographic variables were analyzed, and a multivariate logistic regression was performed identifying factors predicting restrictive behavior. Results The study comprised 1,395 patient reported outcomes. Most respondents were from the United Stated (1142, 78.43%), 225 (15.45%) from Israel, and a minority (89, 6.11%) from other countries. The majority of participants (1,005, 72.88%) reported at least one adopted limitation in daily activities, and 305 (21.86%) maintained more than half of these constraints. Daily life restrictions included avoiding sun exposure (779, 57.83%), international travel (417, 33.33%), indoor public places (431, 33.13%), hair dyeing (271, 22.72%), domestic tourism (284, 21.93%), contact with friends and family (231, 17.69%), children and grandchildren (202, 16.33%), outdoor public spaces (190, 14.62%), and contact with pets (135, 10.41%). Multiple sources were implicated by patients guiding their behavior, including health-care professionals (951, 65.95%), non-medical authorities including the internet, patient forums, partners, friends, and family (171, 11.86%), and both non-medical authorities and the health-care team (320, 22.19%). There was no association between country of origin (p=0.118), and education level (p=0.3591) across patients who maintained strict (≥50% of the limitations) and less strict restrictions (<50% of the limitations). A significant association was noted between younger age (p=0.0014), female sex (p=0.0141) and primary cancer site (p<0.0001), and the adoption of strict restrictions. Conclusion The majority of patients globally reported compromised daily activities, which are likely attributed to misconceptions about therapy and disease. These findings call for the assessment of an overlooked measure, RL-QoL, as an additional endpoint of clinical trials, aiming to achieve the ultimate benefit for our patients, a measure of a full and meaningful life.