Patient preference for commonly‐used, head and neck cancer‐specific quality of life questionnaires in the follow‐up setting (Determin): A multi‐centre randomised controlled trial and mixed methods study

Background Quality of life (QoL) assessment forms an integral part of modern cancer care and research. The aim of this study is to determine patients' preferences and willingness to complete commonly used head‐and‐neck cancer (HNC) QoL questionnaires (QLQs) in routine follow‐up clinics. Methods This is a randomised control trial of 583 subjects from 17 centres during follow‐up after treatment for oral, oropharyngeal or laryngeal cancer. Subjects completed three structured validated questionnaires: EORTC QLQ‐HN35; FACT‐HN and UW‐QOL, and an unstructured patient‐generated list. The order of questionnaire presentation was randomised, and subjects were stratified by disease site and stage. Patients self‐rated the questionnaires they found most helpful to communicate their health concerns to their clinicians. Results Of the 558 respondents, 82% (457) found QLQs useful to communicate their health concerns to their clinician (OR = 15.76; 95% CI 10.83–22.94). Patients preferred the structured disease‐specific instruments (OR 8.79; 95% CI 5.99–12.91), while the open list was the most disliked (OR = 4.25; 95% CI 3.04–5.94). There was no difference in preference by treatment modality. More women preferred the FACT‐HN (OR = 3.01, 95% CI 1.05–8.62), and patients under 70 preferred EORTC QLQ‐HN35 (OR = 3.14, 95% CI 1.3–7.59). However, only 55% of patients expressed preference to complete questionnaires routinely at the clinic. Conclusions Most patients found QLQs helpful during their follow‐up and 55% supported routine questionnaires in follow‐up clinics. Males and people over 70 years old were the least willing to complete the routine questionnaires and preferred shorter questionnaires (e.g., UW‐QOL). Women preferred FACT‐HN, and younger patients preferred EORTC QLQ‐HN35. Reasons for the reluctance to complete questionnaires require elucidation.