Development of digital self-management support for breast cancer survivors: ensuring evidence-based approaches and patient engagement from concept to implementation☆

Abstract

Background

This study aimed to develop digital self-management programs incorporating evidence-based behavioral interventions to address the physical and psychosocial challenges faced by breast cancer survivors (BCS).

Materials and methods

The development was guided by the Medical Research Council framework and involved five steps: (1) needs assessment and consultations with patients and providers (focus groups and surveys), (2) ranking of priority symptoms/conditions (evaluation of patient-reported outcomes within a large cohort), (3) identification of validated self-management programs (literature review), (4) prototype design, testing, and refinement (focus groups with patients for pilot testing), and (5) formal evaluation. This study focused on steps 1-4, including both quantitative and qualitative data collection.

Results

In steps 1-2, six priority symptoms/conditions were identified: emotional distress, fatigue, insomnia, musculoskeletal pain, physical inactivity, and high body mass index. In steps 3-4, three digital behavioral programs were developed and tested: physical activity, mindfulness/meditation, and yoga. These programs incorporated educational content, video and podcast exercises, weekly live sessions, and moderated chat groups. During prototype testing, focus groups with 27 patients highlighted high satisfaction with the programs, noting their potential to increase access to care, empower patients, and improve symptom management. Engagement challenges were identified, including digital literacy aspects, the need for flexibility for autonomous practice, and the need for tools to boost motivation. Programs were refined and are being tested in hybrid efficacy-implementation trials.

Conclusions

Digital self-management programs intended to improve symptom management and quality of life for BCS were developed. By integrating evidence-based content and early patient feedback, these programs have the potential to enhance supportive care access and empower patients. Ongoing trials will assess their clinical efficacy and implementation, with an emphasis on equitable access and engagement across diverse populations.