Background: Patients' self-reported questionnaires measuring symptoms, functioning and quality of life (QOL) can help physicians to screen and monitor patient problems in oncology practice. Although many self-reported questionnaires have been developed, their role in clinical practice remains unclear. This study explores what oncologists and patients need from QOL questionnaires, what their clinical value is and generates recommendations how to improve the questionnaires for use in oncology practice.
Methods: Focus groups were conducted in the Leeds Cancer Centre (St James's and Cookridge hospitals, UK), with 31 patients (9 groups) and 16 oncologists (4 groups). Twenty patients completed a questionnaire. Framework analysis was employed for the analysis.
Results: Patients and physicians wanted the questionnaires to cover: common symptoms and problems (e.g. pain, fatigue), disease and treatment-specific issues (common for patients with similar diagnosis and/or treatment), individual patient-specific issues (usually non-physical, e.g. prognosis, family issues, sexuality) were important to some patients and relevant at specific points in the cancer journey. The timing and scope of enquiry should be flexible and correspond to disease and treatment stages. A model for measurement in clinical practice is proposed combining standard questionnaires with disease/treatment-specific items and a prompt list of items, aiming to facilitate discussion of individual-specific issues and minimize patient burden. Patients' and physicians' views on the clinical value of this approach are described.
Conclusions: The findings emphasized the need for individualized assessment alongside standard measures, for flexible measurement adapted to treatment and follow-up, for clear interpretation of scores and decision guidelines.
(c) 2007 John Wiley & Sons, Ltd.