Evaluation of Experiences With Ecological Momentary Assessment Among Women With Metastatic Breast Cancer: Qualitative Study

TL;DR

This study explores how women with metastatic breast cancer experience using real-time data collection methods and discusses potential interventions to improve their quality of life.

Contribution

The study is the first to examine the use of ecological momentary assessment and interventions in the context of metastatic breast cancer.

Findings

Participants found the EMA format easy to complete and provided design improvement suggestions.

Patients expressed openness to real-time interventions and peer support to enhance quality of life.

A just-in-time adaptive intervention framework is suggested to accommodate daily variations in patient functioning.

Abstract

Patients with metastatic breast cancer (MBC) experience significant quality-of-life decrements, but there are few supportive care interventions specifically designed for this group that significantly improve quality of life. Ecological momentary assessment (EMA) and related ecological momentary interventions (EMIs) may be particularly beneficial for patients with MBC. However, no studies have previously examined the use of EMIs in the context of metastatic cancer.

The purpose of this study was to qualitatively assess experiences with EMA and preferences for intervention content and mode among patients living with MBC, with an emphasis on EMIs.

Women with MBC (n=29) were recruited from a longitudinal, observational study of quality of life using an EMA design. In-depth qualitative interviews assessed participants’ perspectives on the EMA design, including its feasibility, acceptability, and relevance to participants’ MBC experiences. Guided by participants’ EMA data, the interviews also examined the impact of self-monitoring and possible interventions when patients reported high symptom burden and/or low quality of life. Interviews were audio-recorded, transcribed verbatim, and analyzed using open coding, axial coding, and selective coding. The codebook was developed by reviewing a randomly selected subset of transcripts (n=5) and creating inductive, data-driven codes using the raw data, which were deductively organized into overarching themes.

Participants were mainly White (17/29, 59%), heterosexual (23/29, 79%), currently working (17/29, 59%), and held at least a bachelor’s degree (17/29, 59%). Participants had been living with MBC for a median of 2.5 years (range 0.2‐16.6 years). Most were diagnosed with hormone receptor-positive (23/29, 79%) and HER2-negative (21/29, 72%) breast cancer. Qualitative analysis identified 5 major themes. The participants reflected on their reasons for enrolling in the study, including interest in study activities and giving back to the MBC community (theme 1: participant engagement). Most participants found the EMA format easy to complete, and they provided recommendations for improving the design of future studies, including altering the timing and frequency of questionnaires (theme 2: feedback on study design). While less common, some participants discussed how engaging with the EMA protocol altered their experiences or behaviors (theme 3: impact of self-monitoring). Participants also discussed their reactions to seeing their EMA data, including their mixed thoughts on real-time data sharing (theme 4: responses to data). Finally, participants suggested programs and resources to improve their overall quality of life, reflecting on their interest in real-time interventions and peer-to-peer support (theme 5: recommendations for future interventions).

Patients with MBC are willing to use EMA methodologies for data collection on quality of life and are open to EMIs with varying content and formats. Given variations in daily functioning between and within patients, a just-in-time adaptive intervention framework may be well suited for this population.

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