United States population-based estimates of patient-reported outcomes measurement information system symptom and functional status reference values for individuals with cancer

Roxanne E. Jensen*, Arnold L. Potosky, Carol M. Moinpour, Tania Lobo, David Cella, Elizabeth A Hahn, David Thissen, Ashley Wilder Smith, Jaeil Ahn, George Luta, Bryce B. Reeve

*Corresponding author for this work

Research output: Contribution to journalArticle

23 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)1913-1920
Number of pages8
JournalJournal of Clinical Oncology
Volume35
Issue number17
DOIs
StatePublished - Jun 10 2017

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Information Systems
Reference Values
Population
Fatigue
Neoplasms
Sleep
Anxiety
Depression
Pain
Cognition
SEER Program
Aptitude
National Cancer Institute (U.S.)
Patient Reported Outcome Measures
Uterine Cervical Neoplasms
Non-Hodgkin's Lymphoma
Lung Neoplasms
Prostatic Neoplasms
Breast
Lung

ASJC Scopus subject areas

  • Oncology
  • Cancer Research

Cite this

Jensen, Roxanne E. ; Potosky, Arnold L. ; Moinpour, Carol M. ; Lobo, Tania ; Cella, David ; Hahn, Elizabeth A ; Thissen, David ; Smith, Ashley Wilder ; Ahn, Jaeil ; Luta, George ; Reeve, Bryce B. / United States population-based estimates of patient-reported outcomes measurement information system symptom and functional status reference values for individuals with cancer. In: Journal of Clinical Oncology. 2017 ; Vol. 35, No. 17. pp. 1913-1920.
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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.",
author = "Jensen, {Roxanne E.} and Potosky, {Arnold L.} and Moinpour, {Carol M.} and Tania Lobo and David Cella and Hahn, {Elizabeth A} and David Thissen and Smith, {Ashley Wilder} and Jaeil Ahn and George Luta and Reeve, {Bryce B.}",
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United States population-based estimates of patient-reported outcomes measurement information system symptom and functional status reference values for individuals with cancer. / Jensen, Roxanne E.; Potosky, Arnold L.; Moinpour, Carol M.; Lobo, Tania; Cella, David; Hahn, Elizabeth A; Thissen, David; Smith, Ashley Wilder; Ahn, Jaeil; Luta, George; Reeve, Bryce B.

In: Journal of Clinical Oncology, Vol. 35, No. 17, 10.06.2017, p. 1913-1920.

Research output: Contribution to journalArticle

TY - JOUR

T1 - United States population-based estimates of patient-reported outcomes measurement information system symptom and functional status reference values for individuals with cancer

AU - Jensen, Roxanne E.

AU - Potosky, Arnold L.

AU - Moinpour, Carol M.

AU - Lobo, Tania

AU - Cella, David

AU - Hahn, Elizabeth A

AU - Thissen, David

AU - Smith, Ashley Wilder

AU - Ahn, Jaeil

AU - Luta, George

AU - Reeve, Bryce B.

PY - 2017/6/10

Y1 - 2017/6/10

N2 - 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.

AB - 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.

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