Uncovering the Daily Experiences of People Living with Advanced Cancer: Development, Content-Validation and Optimization of an Experience Sampling Methods Questionnaire (Preprint)

Abstract

Experience sampling methods (ESM), self-report methods that typically utilize multiple assessments per day, can provide detailed knowledge of cancer patients’ daily experiences, potentially informing oncological care. The use of ESM among people with advanced cancer is limited and no validated ESM questionnaires currently exist in oncology.

To develop, content-validate, and optimize a digital ESM questionnaire for people with advanced breast or lung cancer (ESM-AC questionnaire), covering multidimensional domains and contextual factors.

Three-round mixed-methods design following COSMIN and EORTC guidelines, comprising semi-structured interviews with a total of 43 people with advanced breast or lung cancer and 8 healthcare professionals. Round one assessed appropriateness, relative importance, relevance, and comprehensiveness of an initial ESM item set, developed from existing questionnaires. Round two tested comprehensibility of ESM items. Round three tested usability of the digital ESM-AC questionnaire using the m-Path application. Analyses included descriptive statistics and qualitative content analysis.

Following the first round, we developed an initial core set of 68 items (to be used with all patients) and a supplementary set (optional; patients select items), both covering physical, psychological, social, spiritual-existential, and global wellbeing domains, and concurrent contexts in which experiences occur. We categorized items to be assessed multiple times per day (e.g., “At this moment, I feel tired.”), once a day, in the morning (e.g., “Last night, I slept well.”) or once a day, in the evening (e.g., “Today, I felt hopeful.”). We used participants’ evaluations to optimize the questionnaire items, the digital application, and its onboarding manual. This resulted in the ESM-AC questionnaire, comprised of a digital core questionnaire containing 31 momentary items, 2 morning items and 7 evening items, and a supplementary set containing 39 items. Participants largely rated the digital questionnaire “easy to use” (M = 4.5 on a scale from 1 to 5, SD = 0.5).

We developed the ESM-AC questionnaire, a content-validated digital questionnaire for people with advanced breast or lung cancer. It showed good usability when administered on smartphone devices. Future research should evaluate the potential of this ESM tool to uncover daily experiences of people with advanced breast or lung cancer, its potential clinical utility and extend validation to other populations with advanced diseases.