Uncovering fluctuations in daily symptoms and well-being among people with advanced cancer: An experience sampling methods study.

Abstract

People with advanced cancer often experience a range of symptoms and reduced well-being. Experience sampling methods, which involve completing multiple smartphone-based questionnaires per day over several days, may offer detailed insights into how these experiences unfold in daily life. To evaluate feasibility and acceptability of experience sampling methods in advanced cancer, and its potential to uncover moment-to-moment symptom and well-being fluctuations. Observational study including baseline measurement, a 7-day experience sampling period with up to 10 assessments per day of symptoms and well-being, and follow-up measurement. We evaluated feasibility through response data and acceptability through a follow-up questionnaire measuring burden, ease-of-use, instruction clarity, and measurement reactivity. We analyzed fluctuations using within-person standard deviations. We invited 79 people with advanced breast or lung cancer via two Belgian hospitals; 40 (51%) enrolled. Thirty-seven participants provided 1703 valid (71% of 2400 scheduled) experience sampling assessments. On 7-point scales, participants reported low burden (<i>M</i> = 2.1, SD = 0.8), high ease-of-use (<i>M</i> = 5.6, SD = 1.2) and instruction clarity (<i>M</i> = 6.5, SD = 0.5), and minimal measurement reactivity (<i>M</i> = 1.3, SD = 0.3). On 0-100 scales, we observed the greatest means of within-person fluctuations across days for tiredness (<i>M</i>_iSD = 16.7, SD = 7.7), feeling relaxed (<i>M</i>_iSD = 13.0, SD = 7.3), and activity limitations (<i>M</i>_iSD = 12.4, SD = 9.9). Higher mean symptom intensity generally corresponded with greater within-person fluctuations. Experience sampling methods proved feasible and acceptable for people with advanced cancer, effectively capturing individuals' unique symptom and well-being fluctuations in daily life. The methods are a promising avenue to enhance personalized care and improve quality of life by revealing the mechanisms behind individuals' fluctuations.