Uncovering the daily experiences of people with advanced cancer: adaptation and feasibility of the experience sampling method (FWOAL940)

People with advanced metastatic cancer are at high risk of experiencing multiple symptoms and difficult emotions. Yet there is surprisingly little scientific knowledge on their momentary subjective experiences in daily life, their variation over time, and relationship with an individual’s context at a given moment. Currently available self-report measures cannot capture such information as they rely on retrospective recall and mental summarization of experiences over time. The experience sampling method (ESM), successfully used in mental health research, is a structured self-report technique assessing momentary experiences in real time. This project aims to

1) adapt and validate the ESM method for people with advanced cancer for measuring momentary subjective experiences in daily life (positive and negative experiences; spanning the four domains of palliative care), their temporal variation, and contextual associations (i.e. location, activities, social company, events), and 2) evaluate its feasibility, acceptability and potential clinical utility. It follows a mixed method design including qualitative methods (cognitive and semi- structured interviews, expert consultation) for adaptation and validation of the ESM method, and a quantitative ESM study over 6 days in 40 people with advanced cancer. If successful, this new assessment method will provide groundbreaking insights into people’s daily experiences, needed to ensure person-centered care for this vulnerable population

Keywords:Experience sampling methods, palliative care

Disciplines:Palliative care and end-of-life care, Social medical sciences not elsewhere classified