Hamidou Zeinab, Baumstarck Karine, Chinot Olivier, Barlesi Fabrice, Salas Sébastien, Leroy Tanguy, Auquier Pascal
EA3279, Self-perceived Health Assessment Research Unit, Aix Marseille Université, 27 bd Jean Moulin, Marseille, cedex 05, F-13385, France.
National Clinical research Quality of Life in Oncology Platform, Nancy, France.
Health Qual Life Outcomes. 2017 May 12;15(1):99. doi: 10.1186/s12955-017-0672-2.
The purposes of this study, performed on a large sample of cancer patient-caregiver dyads, were: i) to simultaneously investigate, using an individualized quality of life (QoL) measure (Schedule for the Evaluation of Individual QoL, SEIQoL), the QoL domains freely expressed by cancer patients and their caregivers, and ii) to explore overlapping between the SEIQoL assessment and QoL assessment using traditional instruments.
The study employed a cross-sectional design including cancer patients who were going to receive chemotherapy treatment and their caregivers. Quality of life was assessed using condition-specific questionnaires (EORTC QLQ-C30 and CarGOQoL), generic health-related questionnaire (SF-36), and open individualized measure (SEIQoL).
The final sample included 205 patient-caregiver dyads. From the SEIQoL, Family, Health, and Leisures were the most freely expressed QoL domains by patients and caregivers, but reported with different weights. Love life and financial issues were less spontaneously mentioned. The SEIQoL index was moderately correlated to the condition-specific QoL questionnaires (R lower than |0.40|) and to SF-36 (correlation coefficients: R ranging from 0.17 to 0.31).
Individualized QoL measures allow individuals to spontaneously express important, non-predefined domains. This study highlights the need to explore QoL using a combination of individualized questionnaires and standardized questionnaires, capturing complementary facets that patients consider important in their life.
本研究以大量癌症患者 - 照顾者二元组为样本，目的如下：i）使用个体化生活质量（QoL）测量方法（个体生活质量评估量表，SEIQoL），同时调查癌症患者及其照顾者自由表达的生活质量领域；ii）探讨SEIQoL评估与使用传统工具进行的生活质量评估之间的重叠情况。
本研究采用横断面设计，纳入即将接受化疗治疗的癌症患者及其照顾者。使用特定疾病问卷（EORTC QLQ - C30和CarGOQoL）、一般健康相关问卷（SF - 36）和开放式个体化测量方法（SEIQoL）评估生活质量。
最终样本包括205个患者 - 照顾者二元组。从SEIQoL来看，家庭、健康和休闲是患者和照顾者最常自由表达的生活质量领域，但权重不同。性生活和财务问题较少被自发提及。SEIQoL指数与特定疾病生活质量问卷（R低于|0.40|）和SF - 36呈中度相关（相关系数：R范围为0.17至0.31）。
个体化生活质量测量方法允许个体自发表达重要的、未预先定义的领域。本研究强调需要结合使用个体化问卷和标准化问卷来探索生活质量，以捕捉患者认为在其生活中重要的互补方面。
