Department of Palliative Medicine, National Cancer Center Hospital, Chuo-ku, Tokyo, Japan.
Department of Palliative and Supportive Medicine, Graduate School of Medicine, Aichi Medical University, Nagakute, Aichi, Japan.
J Cachexia Sarcopenia Muscle. 2023 Feb;14(1):310-325. doi: 10.1002/jcsm.13133. Epub 2022 Nov 20.
Eating-related distress (ERD) is one type of psychosocial distress among advanced cancer patients and family caregivers. Its alleviation is a key issue in palliative care; however, there is no validated tool for measuring ERD.
The purpose of this study was to validate tools for evaluating ERD among patients and family caregivers. The study consisted of a development and validation/retest phase. In the development phase, we made preliminary questionnaires for patients and family caregivers. After face validity and content validity, we performed an exploratory factor analysis and discussed the final adoption of items. In the validation/retest phase, we examined factor validity with an exploratory factor analysis. We calculated Pearson's correlation coefficients between the questionnaire for patients, the Functional Assessment of Anorexia/Cachexia Therapy Anorexia Cachexia Subscale (FAACT ACS) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Cachexia 24 (EORTC QLQ-CAX24) and Pearson's correlation coefficients between the questionnaire for family caregivers and the Caregiver Quality of Life Index-Cancer (CQOLC) for concurrent validity. We calculated Cronbach's alpha coefficients (Cronbach's alpha) and intraclass correlation coefficients (ICCs) for internal consistency and test-retest reliability. We performed the Mann-Whitney U test between the questionnaires and cancer cachexia based on criteria from the international consensus for known-group validity.
In the development phase, 162 pairs of patients and family caregivers were asked to participate, and 144 patients and 106 family caregivers responded. In the validation/retest phase, 333 pairs of patients and family caregivers were asked to participate, and 234 patients and 152 family caregivers responded. Overall, 183 patients and 112 family caregivers did the retest. Seven conceptual groups were extracted for the ERD among patients and family caregivers, respectively. Patient factors 1-7 correlated with FAACT ACS (r = -0.63, -0.43, -0.55, -0.40, -0.38, -0.54, -0.38, respectively) and EORTC QLQ-CAX24 (r = 0.58, 0.40, 0.60, 0.49, 0.38, 0.59, 0.42, respectively). Family factors 1-7 correlated with CQOLC (r = -0.34, -0.30, -0.37, -0.37, -0.46, -0.42, -0.40, respectively). The values of Cronbach's alpha and ICC of each factor and all factors of patients ranged from 0.84 to 0.96 and 0.67 to 0.83, respectively. Those of each factor and all factors of family caregivers ranged from 0.84 to 0.96 and 0.63 to 0.84, respectively. The cachexia group of patients had significantly higher scores than the non-cachexia group for each factor and all factors.
Newly developed tools for measuring ERD experienced by advanced cancer patients and family caregivers have been validated.
进食相关困扰（ERD）是晚期癌症患者和家属的一种心理社会困扰类型。减轻这种困扰是姑息治疗的关键问题，但目前尚无评估 ERD 的有效工具。
本研究旨在验证用于评估患者和家属 ERD 的工具。该研究包括开发和验证/重测两个阶段。在开发阶段，我们为患者和家属制定了初步问卷。在经过表面有效性和内容有效性检验后，我们进行了探索性因子分析，并讨论了最终采用的项目。在验证/重测阶段，我们使用探索性因子分析来检验因子有效性。我们计算了患者问卷、功能性评估厌食/恶病质疗法厌食恶病质量表（FAACT ACS）和欧洲癌症研究与治疗组织生活质量问卷-恶病质 24 项（EORTC QLQ-CAX24）之间的 Pearson 相关系数，以及家属问卷和癌症患者照顾者生活质量指数-癌症（CQOLC）之间的 Pearson 相关系数，以检验同时效度。我们计算了各因子和所有因子的克朗巴赫α系数（Cronbach's alpha）和组内相关系数（ICC），以检验内部一致性和重测信度。我们根据国际共识的已知组有效性标准，在问卷和癌症恶病质之间进行了 Mann-Whitney U 检验。
在开发阶段，要求 162 对患者和家属参与，其中 144 名患者和 106 名家属做出了回应。在验证/重测阶段，要求 333 对患者和家属参与，其中 234 名患者和 152 名家属做出了回应。共有 183 名患者和 112 名家属进行了重测。分别为患者和家属的 ERD 提取了七个概念群。患者因素 1-7 与 FAACT ACS（r = -0.63、-0.43、-0.55、-0.40、-0.38、-0.54、-0.38）和 EORTC QLQ-CAX24（r = 0.58、0.40、0.60、0.49、0.38、0.59、0.42）呈负相关。家庭因素 1-7 与 CQOLC（r = -0.34、-0.30、-0.37、-0.37、-0.46、-0.42、-0.40）呈负相关。各因子和所有因子的患者 Cronbach's alpha 和 ICC 值在 0.84 到 0.96 之间，在 0.67 到 0.83 之间。各因子和所有因子的家属 Cronbach's alpha 和 ICC 值在 0.84 到 0.96 之间，在 0.63 到 0.84 之间。患有恶病质的患者组在各因子和所有因子上的得分均显著高于非恶病质组。
本研究开发了一种新的用于评估晚期癌症患者和家属 ERD 的工具，并对其进行了验证。
