Exploring differences in interpretation of words essential in medical expert-patient communication

In the context of cancer treatment and surgery, quality of life assessment is a crucial part of determining treatment success and viability. In order to assess it, patient-completed questionnaires which employ words to capture aspects of patients well-being are the norm. As the results of these questionnaires are often used to assess patient progress and to determine future treatment options, it is important to establish that the words used are interpreted in the same way by both patients and medical professionals. In this paper, we capture and model patients perceptions and associated uncertainty about the words used to describe the level of their physical function used in the highly common (in Sarcoma Services) Toronto Extremity Salvage Score (TESS) questionnaire. The paper provides detail about the interval-valued data capture as well as the subsequent modelling of the data using fuzzy sets. Based on an initial sample of participants, we use Jaccard similarity on the resulting words models to show that there may be considerable differences in the interpretation of commonly used questionnaire terms, thus presenting a very real risk of miscommunication between patients and medical professionals as well as within the group of medical professionals.