Proxy responses regarding quality of life of patients with terminal lung cancer: preliminary results from a prospective observational study

ObjectiveThis prospective study used the EQ-5D utility and Visual Analogue Scale (VAS) scores to analyse the potential usefulness of proxy responses in quality of life assessments of Japanese patients with terminal lung cancer sufficiently healthy to communicate and reply by themselves. We did not investigate the potential usefulness of using proxy responses for patients who could not respond by themselves.DesignA prospective observational study.SettingSingle centre.ParticipantsThe EQ-5D and VAS responses were gathered from 30 in-hospital patients with lung cancer for a total of three observation points. At nearly the same time, two nurses responded by providing proxy responses.Primary and secondary outcome measuresEQ-5D and VAS responses.ResultsThere were no significant differences between the patients’ and nurses’ responses for EQ-5D utility and VAS scores. For the five dimensions of the EQ-5D, significant differences were found between the patients’ and nurses’ responses for usual activities (patients’ response 1.64±0.07, nurses’ response 1.41±0.05, p=0.03) and anxiety/depression (patients’ response: 1.40±0.05, nurses’ response: 1.19±0.03, p=0.02). There was a significant weak positive correlation between patients’ and nurses’ responses regarding changes in responses from the first to the third observation point (Spearman’s rank correlation coefficient ρ=0.228; p