Graffigna G, Cecchini I, Breccia M, Capochiani E, Della Seta R, Galimberti S, Melosi A, Simonetti F, Pizzuti M, Capalbo S F, Falzetti F, Mazza P, Di Renzo N, Mastrullo L, Rapezzi D, Orlandi E, Intermesoli T, Iurlo A, Pungolino E, Pacilli M
Università Cattolica del Sacro Cuore, Milan, Italy.
GfK Eurisko, Milan, Italy.
Qual Life Res. 2017 Oct;26(10):2739-2754. doi: 10.1007/s11136-017-1611-8. Epub 2017 Jun 12.
The main objective of this study is to gain a deeper understanding of how patients suffering from chronic myeloid leukemia (CML) cope with their illness. The study aims to reconstruct the subjective meaning-making process related to CML in order to gain insights into the impact the disease has on patients' emotions and everyday lives, as well as to explore the psychological impact of their being presented with the chance to suspend their therapy and recover from the disease.
Data were gathered from a qualitative study conducted in Italy on 158 Italian CML patients. Basing the study on the narrative inquiry approach, the patients were required to describe their patient journey in a qualitative narrative diary. These contained prompts to elicit the free expression of their needs, expectations, and priorities. A lexicographic analysis was carried out with T-LAB software and in particular a thematic analysis of elementary contexts (TAECs) and a word association analysis (WAA).
The TAEC detected four thematic clusters related to two factors (temporal frame and contextual setting) that explained the variance among the narratives. The WAA evidenced a wide variety of emotions, both positive and negative, as patients reacted to the possibility of interrupting their therapy.
A better understanding of patients' experiences can offer insights into promoting the development of more sustainable healthcare services and into therapeutic innovation aimed at improving patients' quality of life and at engaging them more in their treatment. The findings of this study can also help make medical professionals more aware of the patient's burden and help them identify potential interactions and emotional levers to improve clinical relationships.
本研究的主要目标是更深入地了解慢性粒细胞白血病（CML）患者如何应对自身疾病。该研究旨在重构与CML相关的主观意义构建过程，以便深入了解该疾病对患者情绪和日常生活的影响，同时探究给予患者暂停治疗并从疾病中康复的机会所产生的心理影响。
数据来自于在意大利对158名意大利CML患者进行的一项定性研究。该研究基于叙事探究方法，要求患者在定性叙事日记中描述其患病历程。这些日记包含促使患者自由表达自身需求、期望和优先事项的提示。使用T-LAB软件进行了词典分析，特别是对基本语境的主题分析（TAECs）和词联想分析（WAA）。
TAEC检测到与两个因素（时间框架和情境设置）相关的四个主题集群，这两个因素解释了叙事之间的差异。WAA表明，随着患者对中断治疗可能性的反应，出现了各种各样的积极和消极情绪。
更好地理解患者的经历可以为促进更可持续的医疗服务发展以及旨在改善患者生活质量并使他们更多地参与治疗的治疗创新提供见解。本研究的结果还可以帮助医疗专业人员更清楚地认识到患者的负担，并帮助他们识别潜在的相互作用和情感杠杆，以改善临床关系。
