The clinical value of quality of life assessment in oncology practice}a qualitative study of patient and physician views y Galina Velikova 1 * z , Noha Awad 1 , Rebecca Coles-Gale 1 , E. Penny Wright 1 , Julia M. Brown 2} and Peter J. Selby 1} 1 Cancer Research UK Clinical Centre}Leeds, Cancer Medicine Research Unit, St James’s University Hospital, Leeds, UK 2 Clinical Trials and Research Unit, University of Leeds, Leeds, UK * Correspondence to: Cancer Research UK Clinical Centre}Leeds, St James’s University Hospital, Beckett Street, Leeds LS9 7TF, UK. E-mail: g.velikova@leeds.ac.uk y Presented in part as a poster at the 7th World Congress of Psycho-Oncology, 25th–28th August 2004, Copenhagen, Denmark. z Cancer Research UK Clinician Scientist. } Joint senior authors. Abstract 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. Copyright # 2007 John Wiley & Sons, Ltd. Supplementary electronic material for this paper is available in Wiley Interscience at http://www.mrw.interscience.wiley.com/suppmat/1057-9249/suppmat/pon.1295.html Keywords: quality of life; patient outcome assessment; qualitative research; clinical practice; cancer; oncology Introduction There is a growing demand on oncologists to monitor the adverse effects of cancer and cancer treatment on patients’ physical, psychological and social performance, and include these issues in clinical decision making [1]. High-quality cancer care aims at improving a range of outcomes important to patients, families and other decision makers, including patient survival and health- related quality of life (QOL) [2]. The need for a comprehensive supportive care strategy for patients and families and good communication between health professionals and patients is increasingly recognized [3]. The science of QOL measurement and patient- reported outcomes developed rapidly in the past two decades. QOL has been defined as ‘patients’ appraisal of and satisfaction with their current level of functioning compared with what they perceived to be possible or ideal’. Health-related QOL is a multi-dimensional construct with key dimensions: disease and treatment-related symptoms, physical, psychological and social functioning [4]. Many self- reported questionnaires are developed and used in clinical trials, but there is little evidence that QOL assessment influenced medical decisions and in- dividual patient care [5]. QOL questionnaires can be used in clinical practice to monitor symptoms/side effects in individual patients, physical functioning and psy- chosocial problems, thus facilitating communica- tion and decision-making [6]. Studies in general medicine suggested that individual QOL reports Received: 22 May 2007 Revised: 25 September 2007 Accepted: 25 September 2007 Copyright # 2007 John Wiley & Sons, Ltd. Psycho-Oncology Psycho-Oncology 17: 690–698 (2008) Published online 21 November 2007 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.1295