开发一个用于评估癌症护理连续过程中与健康相关生活质量的统一系统：欧盟生活质量德尔菲研究，以确定生活质量领域的优先事项。
Development of a unified system for assessing health related quality of life across the cancer care continuum: the EUonQoL Delphi study to identify priorities for quality of life domains.
作者信息
Sweegers Maike G, de Jongh Esther, Bedding Christopher, Nicklin Emma, Doege Daniela, Alfieri Sara, Gangeri Laura, Scacciati Bianca, Caraceni Augusto, Brunelli Cinzia, Bredart Anne, Rojas-Concha Leslye, Pappot Helle, Apolone Giovanni, Bos Nanne, Ciliberto Gennaro, Couespel Norbert, Ferrer Montse, Kaasa Stein, Lombardo Claudio, Pietrobon Ricardo, Pravettoni Gabriella, Sirven Aude, Vachon Hugo, Groenvold Mogens, Franzoi Maria Alice, Velikova Galina, Gilbert Alexandra, van de Poll-Franse Lonneke V
机构信息
Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam, The Netherlands.
Leeds Institute of Medical Research at St James's, University of Leeds, Leeds, UK.
出版信息
J Patient Rep Outcomes. 2025 Jun 19;9(1):70. doi: 10.1186/s41687-025-00907-z.
INTRODUCTION
Cancer and cancer treatment have a major impact on health related quality of life (HRQoL). To improve the assessment of HRQoL in patients with cancer and evaluate the impact of policy interventions, the European Oncology Quality of Life (EUonQoL) project aims at developing a digital, patient centred system to assess HRQoL based on evaluations and preferences of cancer patients and survivors: the EUonQoL-kit.
METHOD
Patients across the cancer care continuum, healthcare professionals and researchers from six European countries (Denmark, France, Germany, Italy, The Netherlands and United Kingdom) were asked to rate the importance of 44 pre-selected HRQoL subdomains over a maximum of three Delphi survey rounds. We evaluated the importance of HRQoL subdomains for three target populations: patients undergoing active treatment, cancer survivors and patients receiving palliative care. The results were discussed during a consensus meeting.
RESULTS
96 patients and 59 healthcare professionals participated in the Delphi study. After three rounds, consensus was reached for 20 subdomains: ability to work, communication with healthcare professionals, diarrhoea, fatigue, fear of recurrence, global health status, impact of treatment side effects, impact on children/family, insomnia, instrumental activities of daily living, maintaining independence, mobility, nausea, overall quality of life, pain, partner relationship, social activity limitations, social isolation, symptom awareness and uncertain prognosis. The subdomains pain and fear of recurrence were rated as important for all three target populations.
CONCLUSION
Subdomains that were considered important for the assessment of HRQoL in patients with cancer can be summarised into: physical symptoms, mobility & activity, future outlook, social roles & activities, family & relationships, social isolation, self-efficacy, overall HRQoL, and healthcare experience. The importance of the subdomains differed for patients in different phases of the cancer care continuum. These findings were used for the creation of the first version of the EUonQoL-Kit, as a base for its further development.
引言
癌症及癌症治疗对健康相关生活质量（HRQoL）有重大影响。为改善癌症患者HRQoL的评估并评估政策干预的影响，欧洲肿瘤生活质量（EUonQoL）项目旨在开发一个以患者为中心的数字系统，根据癌症患者及幸存者的评估和偏好来评估HRQoL：即EUonQoL工具包。
方法
来自六个欧洲国家（丹麦、法国、德国、意大利、荷兰和英国）的癌症护理连续过程中的患者、医疗专业人员和研究人员被要求在最多三轮德尔菲调查中对44个预先选定的HRQoL子领域的重要性进行评分。我们评估了HRQoL子领域对三个目标人群的重要性：正在接受积极治疗的患者、癌症幸存者和接受姑息治疗的患者。结果在一次共识会议上进行了讨论。
结果
96名患者和59名医疗专业人员参与了德尔菲研究。三轮之后，就20个子领域达成了共识：工作能力、与医疗专业人员的沟通、腹泻、疲劳、对复发的恐惧、总体健康状况、治疗副作用的影响、对儿童/家庭的影响、失眠、日常生活的工具性活动、保持独立、行动能力、恶心、总体生活质量、疼痛、伴侣关系、社会活动限制、社会孤立、症状意识和预后不确定。疼痛和对复发的恐惧这两个子领域对所有三个目标人群都被评为重要。
结论
被认为对癌症患者HRQoL评估重要的子领域可归纳为：身体症状、行动能力与活动、未来展望、社会角色与活动、家庭与关系、社会孤立、自我效能感、总体HRQoL和医疗体验。这些子领域的重要性在癌症护理连续过程的不同阶段对患者有所不同。这些发现被用于创建EUonQoL工具包的第一版，作为其进一步开发的基础。
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