JMIR Publications

ABSTRACT

Background:

Patients with blood cancer experience serious physical and emotional symptoms throughout their cancer journey.

Objective:

Building on prior work, we developed and tested an app designed to help patients with multiple myeloma (MM) and chronic lymphocytic leukemia (CLL) self-manage symptoms.

Methods:

We developed our Blood Cancer Coach app with input from clinicians and patients. Trial participants were recruited from Duke Health and nationally in partnerships with the Association of Oncology Social Work (AOSW), Leukemia and Lymphoma Society, and other patient groups. Participants were randomized to attention control (Springboard for Cancer website) or the Blood Cancer Coach intervention arm. Data were collected at baseline, four, and eight weeks. Outcomes of interest were global health (PROMIS Global Health), post-traumatic stress (PCL5), and cancer symptoms (ESAS-r). Participants in the intervention arm completed user satisfaction surveys.

Results:

Among 180 patients who downloaded the app, 89 (49%) consented to participate, and 66 (37%) completed baseline surveys. Of those who completed Baseline surveys, 38 (58%) completed Week 4 (16 intervention, 22 control) surveys and 28 (42%) completed week eight surveys (13 intervention and 15 control). Most participants found the app at least moderately effective at: helping manage symptoms (87%); feeling more comfortable seeking help (87%); increasing awareness of resources (73%); and reported being satisfied with the app overall (73%). The most used functions within the app were medication log, distress tracking, guided meditations, and symptom tracking. There was no significant differences between the control and intervention arms at week 4 or week 8. We also saw no significant improvement overtime on outcomes within the intervention arm.

Conclusions:

The results of our feasibility pilot were promising in that most participants found the app to be helpful in managing their symptoms. In addition, though most treatment arm participants reported satisfaction with the app and that it was helpful in several important areas, we did not find significantly reduced symptoms or improve GMH and GPH over two months. Recruitment and retention were challenging for this app-based study, an experience echoed by others. Limitations included a predominantly white and college educated sample. Future studies would do well to include self-efficacy outcomes, target those with more symptoms, and emphasize diversity in recruitment and retention.