United States Population-Based Estimates of Patient-Reported Outcomes Measurement Information System Symptom and Functional Status Reference Values for Individuals With Cancer

Abstract

Purpose To estimate cancer population-based reference values in the United States for eight PROMIS (Patient-Reported Outcomes Measurement Information System) domains by age and stage of disease. Patients and Methods For the Measuring Your Health (MY-Health) study, persons newly diagnosed with cancer (prostate, colorectal, non-small-cell lung, non-Hodgkin lymphoma, breast, uterine, or cervical) from 2010 to 2012 (N = 5,284) were recruited through the National Cancer Institute's SEER Program. Participants were mailed surveys 6 to 13 months after diagnosis. Raking by race/ethnicity, age, and stage generated weighted average PROMIS scores for pain interference, fatigue, anxiety, depression, sleep disturbance, physical function, ability to participate in social roles, and cognitive function. PROMIS measures are standardized to a T-score metric, with a score of 50 representing the general US population mean. Clinically meaningful differences were defined as a 3-point difference in scores. Results Several reference values (means) for patients with cancer were worse than the general United States population norms of 50. These include pain interference (52.4), fatigue (52.2), and physical function (44.1). Reference values were highest (ie, showed greatest symptom burden) in lung cancer (pain interference, 55.5; fatigue, 57.3; depression, 51.4) and cervical cancer (anxiety, 53.2; sleep disturbance, 53.4). Reference values for patients age 65 to 84 years reported lower sleep disturbance, anxiety, and depression, and better cognitive function than younger patients. Cancer reference values were poorer among those with advanced disease compared with patients with limited or no evidence of disease, specifically physical function (41.1 v 46.6, respectively), fatigue (55.8 v 50.2, respectively), and pain interference (55.2 v 50.9, respectively). Conclusion In a large, population-based sample of patients with recently diagnosed cancer, we observed symptom severity and functional deficits by age, stage, and cancer type consistent with the expected impact of cancer diagnosis and treatment. These United States cancer reference values can help facilitate interpretation of the PROMIS domain scores in research studies or in clinical applications that measure and evaluate the symptom and functional burden patients with cancer experience after initial treatment.

Tools to facilitate communication during physician‐patient consultations in cancer care: An overview of systematic reviews

“…PRO measures vary in terms of data they collect and the reporting of data, as in who receives them and when. Electronic screening systems that can collect PRO measures and provide immediate feedback to physicians about their patients' health have been established . The US National Institutes of Health has developed the Patient‐Reported Outcomes Measurement Information System (PROMIS) as a centralized electronic repository and data collection facility to support the collection of PROs.…”

“…The US National Institutes of Health has developed the Patient‐Reported Outcomes Measurement Information System (PROMIS) as a centralized electronic repository and data collection facility to support the collection of PROs. PROMIS is a cooperative group of research sites that has applied mixed‐methods research methodology to develop domain‐specific measures of physical, mental, and social health across diseases . PROMIS reference values by age and stage at diagnosis within each cancer type have been developed with the aim of assisting clinicians to interpret patient‐reported symptoms and health status …”

Postdiagnosis sedentary behavior and health outcomes in cancer survivors: A systematic review and meta‐analysis

“…1 Sedentary behavior, defined as any waking behavior characterized by an energy expenditure ≤1.5 metabolic equivalents of task while in a sitting, reclining, or lying posture, 2,3 has been proposed as a risk factor for several health outcomes in cancer survivors. 1 Sedentary behavior, defined as any waking behavior characterized by an energy expenditure ≤1.5 metabolic equivalents of task while in a sitting, reclining, or lying posture, 2,3 has been proposed as a risk factor for several health outcomes in cancer survivors.…”

Distribution of global health measures from routinely collected PROMIS surveys in patients with breast cancer or prostate cancer

“…GPH was the sum of physical health (Global03), activities of daily living (Global06), pain (Global07), and fatigue (Global08). 13 18 Raw GPH and GMH scores were converted into T scores for each patient with standard conversion tables.…”

“…8 The Patient-Reported Outcomes Measurement Information System (PROMIS) was a collaboration launched in 2004 by the National Institutes of Health with the goal of developing PRO measures that could be standardized and shared across sites and disease states. 12,13 Although PROMIS is gaining more widespread use in oncology practice, limited work has been done to evaluate the implementation of PROMIS measures into routine clinical workflows. 10,11 Consequently, there have been several recent efforts to establish baseline data and reference ranges for PROMIS responses in cancer populations.…”