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

Abstract

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.

Loss of appetite in patients with cancer: an update on characterization, mechanisms, and palliative therapeutics

“…For example, Altman and others conducted a qualitative study of patients with small-cell lung cancer with the goal of developing a conceptual model to capture symptoms associated with this malignancy. Although these investigators described a variety of symptoms, a germane quotation from a patient – ‘I don’t eat anywhere near like I ate before’ – captures the fact that anorexia is a noteworthy symptom in many patients with cancer and requires clinical attention 1 . Similarly, Amano and others developed and validated a questionnaire for eating distress in patients with advanced cancer 2 .…”

Holistic multimodal care for patients with cancer cachexia and their family caregivers

“…Furthermore, there had been no questionnaire to measure the cancer cachexia-related QOL and eating-related distress in family caregivers. Therefore, tools that specifically measure eating-related distress experienced by patients with advanced cancer and their family caregivers were recently developed, respectively, 29 because eating-related distress, which can adversely affect QOL, is an important matter to address in holistic multimodal care for patients and family caregivers affected by cancer cachexia. For example, the PiCNIC study found that family-centered nutritional interventions that included advice for people with advanced cancer on improving the nutritional intake (energy and protein) had good potential to have positive effects on patients' nutritional status and eating-related distress.…”