Improving data capture of the patient experience for young adults with cancer: A randomized controlled trial of precision electronic patient-reported outcomes in community-based oncology practices (ECOG-ACRIN EAQ202).

Abstract

431 Background: Patient-reported outcomes (PROs) characterize patient perspectives on symptoms, functioning, and health-related quality of life (HRQOL). Despite rising cancer incidence among young adults (YAs), PROs are underutilized, particularly in NCI Community Oncology Research Program (NCORP) sites, where most YAs receive care. We hypothesized that YAs randomized to choose which PROs to complete (Choice) would exhibit increased engagement—evidenced by higher one-month completion rates—compared to YAs assigned a standard set of PROs (Fixed). Methods: Eligible YAs (aged 18–39, within 12 weeks of diagnosis, English/Spanish-speaking, and with internet access) at NCORP sites were randomized either to Choice (self-selecting 5 HRQOL domains) vs. Fixed (physical function, pain, cognitive function, social support, financial toxicity) Arms. NIH PROMIS measures were administered via the ECOG-ACRIN Systems for Easy Entry of PROs (EASEE-PRO) at randomization and one-month follow-up. Primary outcomes were feasibility (≥75% ePRO completion at one month), and acceptability (≥75% rated ePROs as easy/very easy to 1) complete and 2) understand). Arms were compared using Fisher’s exact tests. Exploratory outcomes included HRQOL priorities and ePRO data-sharing preferences. Results: We randomized 484 YAs (58% female, 14% Hispanic, 12% Black; median age=33.3 years, IQR=28.5–37.1), capped by cancer type to ensure a representative sample and stratified by sex, race, ethnicity, and age. YAs had breast (19%), lymphoma (15%), testicular (12%), colorectal (12%), or cervical (7%) cancer. One-month ePRO completion rates were high and similar between the Choice (79.0%) vs Fixed (84.7%) arms ( p =0.19). Acceptability ratings for ease of completing ePROs exceeded the a priori threshold for Choice (78.1%) but not Fixed (73.9%) arms (p=0.38). Acceptability ratings for ease of understanding ePROs exceeded the threshold for both Choice (78.1%) and Fixed (79.4%) arms (p=0.80). Cohort-wide, top HRQOL priorities were: Physical Ability, Finances, Life Outlook, Thinking & Memory, and Pain. Most YAs reported willingness to complete ePROs (≥7 out of 10) to inform their oncology team about their symptoms and concerns (78%) and to help researchers understand how cancer and treatment affect their HRQOL (85%). Conclusions: This study demonstrates proof of concept for recruiting a large, representative sample of YAs through community oncology settings. Our approach offers a feasible and acceptable strategy for precision PRO collection, minimizing response burden while allowing YAs to report their unique and most salient concerns. Through facilitating personalized PROs this approach may be especially well suited for populations among whom symptom experiences and quality of life are less well studied. Clinical trial information: NCT05108298 .