Velikova Galina, Awad Noha, Coles-Gale Rebecca, Wright E Penny, Brown Julia M, Selby Peter J
Cancer Research UK Clinical Centre-Leeds, Cancer Medicine Research Unit, St James's University Hospital, Leeds, UK.
Psychooncology. 2008 Jul;17(7):690-8. doi: 10.1002/pon.1295.
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.
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.
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.
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.
患者自我报告的用于测量症状、功能和生活质量（QOL）的问卷有助于医生在肿瘤学实践中筛查和监测患者问题。尽管已经开发了许多自我报告问卷，但其在临床实践中的作用仍不明确。本研究探讨肿瘤学家和患者对生活质量问卷的需求、其临床价值，并就如何改进问卷以用于肿瘤学实践提出建议。
在利兹癌症中心（英国圣詹姆斯医院和库克瑞治医院）开展了焦点小组访谈，共有31名患者（9个小组）和16名肿瘤学家（4个小组）参与。20名患者完成了一份问卷。采用框架分析法进行分析。
患者和医生希望问卷涵盖：常见症状和问题（如疼痛、疲劳）、疾病和治疗特定问题（对于诊断和/或治疗相似的患者常见）、个体患者特定问题（通常非身体方面的，如预后、家庭问题、性方面），这些对一些患者很重要，且在癌症病程的特定阶段相关。询问的时间和范围应灵活，并与疾病和治疗阶段相对应。提出了一种临床实践中的测量模型，将标准问卷与疾病/治疗特定项目以及项目提示列表相结合，旨在促进对个体特定问题的讨论并减轻患者负担。描述了患者和医生对该方法临床价值的看法。
研究结果强调了在采用标准测量方法的同时进行个体化评估的必要性，需要根据治疗和随访进行灵活测量，需要对分数进行清晰解读并制定决策指南。
