Objectives: The End-of-Life Dementia-Comfort Assessment in Dying (EOLD-CAD) scale is one of the few outcome instruments designed to capture symptom burden and well-being among nursing home residents with dementia; however, psychometric evaluations of the EOLD-CAD are limited. Although the instrument is often used to assess outcomes prospectively, it was originally developed and tested as a postmortem assessment. The purpose of this study is to evaluate the instrument properties of the EOLD-CAD using staff reports from a large sample of nursing home residents with cognitive impairment prior to death.
View Article and Find Full Text PDFBackground: Experience sampling methods typically involve multiple self-report assessments per day over consecutive days. Unlike traditional patient-reported outcome measures or interviews, such methods offer the possibility to capture the temporal fluctuations of experiences in daily environments, making them valuable for studying the daily lives of people with advanced illness. Yet, their use in palliative care research is limited.
View Article and Find Full Text PDFBackground: Older people who die from serious chronic disease typically experience long periods (months or years) of illness and complex fluctuations in their physical health and in their social, psychological and existential well-being. Our understanding of these end-of-life trajectories is very limited, focuses predominantly on physical function and clinical predictors and neglects inter-individual differences. A better understanding of end-of-life trajectories, including what is shared among people and what is individually specific, is needed for an optimal provision of palliative care and health services planning.
View Article and Find Full Text PDFBackground: Cancer navigation programs aim to support, educate, and empower patients and families, addressing barriers to diagnostics, treatment, and care. Navigators engage with people to ensure timely access to services and resources. While promising for older people with cancer, these programs are scarce in Europe, and research on their effectiveness and implementation is limited.
View Article and Find Full Text PDFBackground: The experience sampling method (ESM), a self-report method that typically uses multiple assessments per day, can provide detailed knowledge of the daily experiences of people with cancer, potentially informing oncological care. The use of the ESM among people with advanced cancer is limited, and no validated ESM questionnaires have been developed specifically for oncology.
Objective: This study aims to develop, content validate, and optimize the digital Experience Sampling Method for People Living With Advanced Cancer (ESM-AC) questionnaire, covering multidimensional domains and contextual factors.