Development and validation of questionnaires for eating‐related distress among advanced cancer patients and families

Background: 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. Methods: 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. Results: 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. Conclusions: Newly developed tools for measuring ERD experienced by advanced cancer patients and family caregivers have been validated

The impact of cachexia on dietary intakes, symptoms, and quality of life in advanced cancer

Abstract Background The relationships between cachexia stages and the Functional Assessment of Anorexia/Cachexia Therapy Anorexia Cachexia Subscale (FAACT ACS) 12‐item, 5‐item anorexia symptoms, and 4‐item anorexia concerns have not been investigated in Asian patients with advanced cancer. Methods This is a multicentre questionnaire survey conducted in palliative and supportive care settings across Japan. Consecutive patients were enrolled. Patient characteristics and anthropometric measurements were obtained. Dietary intakes and nutrition impact symptoms were also assessed. Patients evaluated their quality of life (QOL) using FAACT ACS. Subjects were divided into two groups, that is, pre‐cachexia (non‐cachexia) and cachexia and refractory cachexia (cachexia), based on cancer cachexia criteria from the international consensus. Comparisons were performed using the Mann–Whitney U test or chi‐squared test. To evaluate the relationship between cachexia stages and FAACT ACS 12‐item, 5‐item anorexia symptoms, and 4‐item anorexia concerns, adjusted odd ratios (ORs) and 95% confidence intervals (CIs) were calculated in the logistic models. Results Among 495 patients, 378 (76.4%) responded. Due to missing data, 344 patients were classified into the non‐cachexia group (n = 174) and cachexia group (n = 170), and 318 remained in the analysis of FAACT ACS. The cachexia group had a more impaired performance status, a lower body mass index, and a higher frequency of weight loss in 1 month (P = 0.021, <0.001, and <0.001, respectively). Advancing stages were associated with lack of appetite and reduced dietary intakes (P < 0.001 and P < 0.001, respectively). QOL scores were significantly worse in the cachexia group in FAACT ACS 12‐item, 5‐item anorexia symptoms, and 4‐item anorexia concerns (P < 0.001, P = 0.001, and P < 0.001, respectively). In the models of FAACT ACS 12‐item, 5‐item anorexia symptoms, and 4‐item anorexia concerns, significantly higher adjusted ORs than in the non‐cachexia group were observed in the cachexia group [2.24 (95% CI 1.34–3.77), P = 0.002; 1.77 (95% CI 1.08–2.92), P = 0.024; and 2.18 (95% CI 1.29–3.70), P = 0.004, respectively]. Conclusions FAACT ACS 12‐item, 5‐item anorexia symptoms, and 4‐item anorexia concerns are useful for identifying patients at risk of QOL that deteriorates with advancing stages in this population