JMIR Publications

ABSTRACT

Background:

Measuring patient-reported outcomes (PROs) requires an individual’s own accounting of their symptoms, functional status, and quality of life. By leveraging digital health technology, remote PRO assessments can be used as a clinical tool to facilitate meaningful provider interactions and more personalized treatment.

Objective:

The aim of this study was to explore the feasibility and acceptability of collecting remote patient-reported outcome data using validated health-related quality of life (HRQOL) assessment tools through a smartphone application in treatment for prostate cancer.

Methods:

We developed an Apple ResearchKit application, Strength Through Insight, with content from either EPIC-26 or EPIC-CP and FAPSI-8, all validated health-related quality of life (HRQoL) assessment tools. Strength Through Insight was tested in a single-arm pilot study with patients receiving prostate cancer treatment at Thomas Jefferson University Hospital and affiliates. Participants were recruited in clinic and given instructions on how to download the app and complete self-reported assessments once a week over a 12-week period. A mixed methods approach was used to evaluate the feasibility and acceptability of Strength Through Insight. Patients also participated in pre-and-post-study interviews to evaluate acceptability and usefulness of digital health technology to aid in routine data collection and care management of cancer treatment.

Results:

A total of 30 patients consented to the study; 1 patient failed to complete any of the questionnaires and was left out of the analysis of the intervention. Out of the remaining 29 participants, 25 patients (86.2%) (one-sided 95% CI lower bound 71.2%) completed at least 60% of weekly questions over the 12-week period exceeding our pre-specified threshold of 70%. Most participants self-identified with having a high digital literacy level (defined as the ability to use, understand, evaluate, and analyze information from multiple formats from a variety of digital sources) and only a few participants identified with having a low digital literacy level, (defined as only having the ability to gather information on the web).Interviews were thematically analyzed to reveal the following themes (1) value of emotional support in cancer treatment, (2) rise of/power of online patient communities (3) patient concerns over privacy, and (4) desire for patient engagement tools.

Conclusions:

Strength Through Insight was implemented in an oncology setting and was demonstrated to be a feasible and acceptable method of data collection for the remote patient-reported outcomes. A high compliance rate confirmed the app as a reliable tool for patients with localized and advanced prostate cancer. Nearly all participants reported the smartphone app easier or equivalent to the traditional paper-and-pen approach, providing evidence of acceptability and support for the use of remote PRO monitoring. Thus, this study expands on current research involving digital health applications for patient-generated data. Future digital health technologies should focus on theoretical underpinnings as a framework to incorporate patient perspectives to personalize adoption, engagement, and behavior change. Clinical Trial: ClinicalTrials.gov identifier: NC03197948