In patient care, the use of questionnaires for both diagnosis and progression assessment is commonplace. An example is the Toronto Extremity Salvage Score (TESS) which was developed to monitor the effects of therapeutic interventions on patients undergoing limb salvage surgery of extremities and is used worldwide. The self-completed questionnaire allows participants to pick a selection of precise responses (e.g., “impossible”, “difficult”, and “not at all difficult”) representing their perceptions about the extent of difficulty to perform daily activities based on a Likert scale.
While questionnaires such as TESS are widely used, the data collected are commonly only used in very limited form, for example during post-questionnaire discussion.
From a methodological point of view, it is also unclear if the actual interpretation of the labels used in such questionnaires (e.g., “difficult”) are interpreted identically or at least sufficiently similarly in order to: A) provide an adequate means of communication between patient and medical professional and B) enable meaningful aggregation across patients.
Based on a collaboration with the East Midlands Sarcoma Service (EMSS), a small scale pilot study has been conducted exploring the interpretation of the different labels by both patients and medical practitioners. The study used interval-valued scales to capture the interpretation of individual labels and indicates that for some labels, there is a substantial variation in their interpretation by patients and medical professionals. The results of this study have been accepted for poster publication to BSG 2016 (http://www.britishsarcomagroup.org.uk/).
Based on the initial work, the Hearing Patients project focusses on: