Mlakar Izidor, Lin Simon, Nateqi Jama, Gruarin Stefanie, Diéguez Lorena, Piairo Paulina, Pires Liliana R, Tement Sara, Aleksandraviča Ilona, Leja Mārcis, Arcimoviča Krista, Bleret Valérie, Kaux Jean-François, Kolh Philippe, Maquet Didier, Gómez Jesús Garcia, Mata Jesus García, Salgado Mercedes, Horvat Matej, Ravnik Maja, Flis Vojko, Smrke Urška
Faculty of Electrical Engineering and Computer Science, University of Maribor, 2000 Maribor, Slovenia.
Data Science Department, Symptoma, 1030 Vienna, Austria.
J Clin Med. 2022 Apr 5;11(7):2041. doi: 10.3390/jcm11072041.
(1) Background: The needs of cancer survivors are often not reflected in practice. One of the main barriers of the use of patient-reported outcomes is associated with data collection and the interpretation of patient-reported outcomes (PROs) due to a multitude of instruments and measuring approaches. The aim of the study was to establish an expert consensus on the relevance and key indicators of quality of life in the clinical practice of breast cancer survivors. (2) Methods: Potential indicators of the quality of life of breast cancer survivors were extracted from the established quality of life models, depicting survivors' perspectives. The specific domains and subdomains of quality of life were evaluated in a two-stage online Delphi process, including an international and multidisciplinary panel of experts. (3) Results: The first round of the Delphi process was completed by 57 and the second by 37 participants. A consensus was reached for the Physical and Psychological domains, and on eleven subdomains of quality of life. The results were further supported by the additional ranking of importance of the subdomains in the second round. (4) Conclusions: The current findings can serve to optimize the use of instruments and address the challenges related to data collection and interpretation as the facilitators of the adaption in routine practice.
(1) 背景：癌症幸存者的需求在实际中往往未得到体现。使用患者报告结局的主要障碍之一与数据收集以及由于多种工具和测量方法导致的患者报告结局（PROs）的解读有关。本研究的目的是就乳腺癌幸存者临床实践中生活质量的相关性和关键指标达成专家共识。(2) 方法：从既定的生活质量模型中提取乳腺癌幸存者生活质量的潜在指标，这些模型描绘了幸存者的观点。生活质量的具体领域和子领域在两阶段在线德尔菲过程中进行评估，该过程包括一个国际多学科专家小组。(3) 结果：第一轮德尔菲过程有57名参与者完成，第二轮有37名参与者完成。在身体和心理领域以及生活质量的11个子领域达成了共识。第二轮中子领域重要性的额外排名进一步支持了这些结果。(4) 结论：当前的研究结果可用于优化工具的使用，并应对与数据收集和解读相关的挑战，作为常规实践中适应的促进因素。
