The Measuring Your Health Study: Leveraging Community-Based Cancer Registry Recruitment to Establish a Large, Diverse Cohort of Cancer Survivors for Analyses of Measurement Equivalence and Validity of the Patient Reported Outcomes Measurement Information System® (PROMIS®) Short Form Items

Abstract

The Measuring Your Health (MY-Health) study was designed to fill evidence gaps by validating eight Patient Reported Outcomes Measurement Information System® (PROMIS®) domains (Anxiety, Depression, Fatigue, Pain Interference, Physical Function, Sleep Disturbance, Applied Cognitive Function, and Ability to Participate in Social Roles and Activities) across multiple race-ethnic and age groups in a diverse cohort of cancer patients. This paper provides detailed information on MY-Health study design, implementation, and participant cohort; it identifies key challenges and benefits of recruiting a diverse community-based cancer cohort. Between 2010 and 2012, we identified eligible patients for the MY-Health study in partnership with four Surveillance, Epidemiology, and End Results (SEER) program cancer registries located in California, Louisiana, and New Jersey.  The overall response rate for the MY-Health cohort (n = 5,506) was 34 %, with a median response time of 9.5 months after initial cancer diagnosis. The cohort represented meaningful diversity of age (22 % under 49 years of age) and race/ethnicity (41 % non-Hispanic White) across seven cancers.  Challenges included lower response rates by race/ethnic minorities, young, and advanced-stage cancer patients, use of non-final registry information for eligibility identification, and lower use of translated surveys than expected. The MY-Health cohort represents one of the largest efforts to measure the full range of patient-reported symptoms experienced after initial cancer treatment.  It provides sufficient diversity in terms of sociodemographics, symptoms, and function to provide a meaningful validation of eight PROMIS measures.