Assessing the social impact of cancer: a review of available tools

Abstract

Taking care of oncological patients holistically—from a biological, social, and psychological point of view—also involves evaluating the social aspects of the disease. In the present study, we provide further insights on how investigations regarding the social impact of an oncological disease are conducted with specifically designed tools on patients who have personally been affected. The objective is then to understand how the social dimension is theorized and, therefore, which practical aspects of subjective experience are employed to assess the social impact. We performed a systematic review of the literature identified by MedLine and PsycINFO databases. Of the 469 articles obtained from the search, 27 deal with 14 different measurement instruments of the social impact of the oncological experience. Of the identified tools, 71 % were specifically designed for the oncological setting and were heterogeneous both in the investigated domains as well as social referrals; 64 % of these had a multidimensional structure. Internal consistency was reported for all instruments, while temporal stability only for 36 % of the tools. Construct validity and concurrent validity were reported for 79 % of the instruments, criterion and predictive validity for one instrument only, external validity for 18 % of the tools, and cross-cultural validity for one instrument only. The content was directly available for most instruments. The great interest in this subject as borne out by the amount of studies published in international psycho-oncological literature confirms the importance of having a valid and reliable instrument specifically dedicated to measuring the social impact of the oncological experience. At the same time, further investigation is required to investigate the psychometric properties of the existing tools.