U.S. General Population Estimate for "Excellent" to "Poor" Self-Rated Health Item.

Background: The most commonly used self-reported health question asks people to rate their general health from excellent to poor. This is one of the Patient-Reported Outcomes Measurement Information System (PROMIS) global health items. Four other items are used for scoring on the PROMIS global physical health scale.

Unveiling SEER-CAHPS®: a new data resource for quality of care research.

Background: Since 1990, the National Cancer Institute (NCI) and Centers for Medicare and Medicaid Services (CMS) have collaborated to create linked data resources to improve our understanding of patterns of care, health care costs, and trends in utilization. However, existing data linkages have not included measures of patient experiences with care.

Objective: To describe a new resource for quality of care research based on a linkage between the Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS®) patient surveys and the NCI's Surveillance, Epidemiology and End Results (SEER) data.

US valuation of health outcomes measured using the PROMIS-29.

Objectives: Health valuation studies enhance economic evaluations of treatments by estimating the value of health-related quality of life (HRQOL). The Patient-Reported Outcomes Measurement Information System (PROMIS) includes a 29-item short-form HRQOL measure, the PROMIS-29.

Methods: To value PROMIS-29 responses on a quality-adjusted life-year scale, we conducted a national survey (N = 7557) using quota sampling based on the US 2010 Census.

Methodological Considerations When Studying the Association between Patient-Reported Care Experiences and Mortality.

Objective: To illustrate methodological considerations when assessing the relationship between patient care experiences and mortality.

Data Source: Medical Expenditure Panel Survey data (2000-2005) linked to National Health Interview Survey and National Death Index mortality data through December 31, 2006.

Study Design: We estimated Cox proportional hazards models with mortality as the dependent variable and patient experience measures as independent variables and assessed consistency of experiences over time.

The Facilitators of and Barriers to Adherence to Hypertension Treatment Scale.

Background: Lack of adherence to recommended regimens is a major cause of uncontrolled blood pressure (BP) among African/Black American (AA) women. The national initiative to increase BP control among AAs by 50% makes clear the need for culturally appropriate instruments to assess facilitators of adherence to treatment of hypertension (high BP [HBP]).

Objective: The aim of this study was to develop a culturally sensitive measure of facilitators of and barriers to adherence to hypertension treatment regimens for AA women.

Should health care providers be accountable for patients' care experiences?

Measures of patients' care experiences are increasingly used as quality measures in accountability initiatives. As the prominence and financial impact of patient experience measures have increased, so too have concerns about the relevance and fairness of including them as indicators of health care quality. Using evidence from the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) surveys, the most widely used patient experience measures in the United States, we address seven common critiques of patient experience measures: (1) consumers do not have the expertise needed to evaluate care quality; (2) patient "satisfaction" is subjective and thus not valid or actionable; (3) increasing emphasis on improving patient experiences encourages health care providers and plans to fulfill patient desires, leading to care that is inappropriate, ineffective, and/or inefficient; (4) there is a trade-off between providing good patient experiences and providing high-quality clinical care; (5) patient scores cannot be fairly compared across health care providers or plans due to factors beyond providers' control; (6) response rates to patient experience surveys are low, or responses reflect only patients with extreme experiences; and (7) there are faster, cheaper, and more customized ways to survey patients than the standardized approaches mandated by federal accountability initiatives.

Health-related quality of life in older adult survivors of selected cancers: data from the SEER-MHOS linkage.

Background: Research on health-related quality of life (HRQOL) among older adult cancer survivors is mostly confined to breast cancer, prostate cancer, colorectal cancer, and lung cancer, which account for 63% of all prevalent cancers. Much less is known about HRQOL in the context of less common cancer sites.

Methods: HRQOL was examined with the 36-Item Short Form Health Survey, version 1, and the Veterans RAND 12-Item Health Survey in patients with selected cancers (kidney cancer, bladder cancer, pancreatic cancer, upper gastrointestinal cancer, cancer of the oral cavity and pharynx, uterine cancer, cervical cancer, thyroid cancer, melanoma, chronic leukemia, non-Hodgkin lymphoma, and multiple myeloma) and in individuals without cancer on the basis of data linked from the Surveillance, Epidemiology, and End Results cancer registry system and the Medicare Health Outcomes Survey.

Correlation of PROMIS scales and clinical measures among chronic obstructive pulmonary disease patients with and without exacerbations.

Purpose: The Patient-Reported Outcomes Measurement Information System (PROMIS(®)) initiative was developed to advance the methodology of PROs applicable to chronic diseases. Chronic obstructive pulmonary disease (COPD) is a progressive chronic disease associated with poor health. This study was designed to examine the correlation of PROMIS health-related quality of life (HRQOL) scales and clinical measures among COPD patients.

Development of the NIH Patient-Reported Outcomes Measurement Information System (PROMIS) gastrointestinal symptom scales.

Objectives: The National Institutes of Health (NIH) Patient-Reported Outcomes Measurement Information System (PROMIS(®)) is a standardized set of patient-reported outcomes (PROs) that cover physical, mental, and social health. The aim of this study was to develop the NIH PROMIS gastrointestinal (GI) symptom measures.

Methods: We first conducted a systematic literature review to develop a broad conceptual model of GI symptoms.

A randomized controlled pilot trial of the functional assessment screening tablet to engage patients at the point of care.

Background: Healthcare providers play an important role in encouraging healthy behaviors and improving health-related quality of life (HRQoL). They are most effective when they partner with informed, engaged patients.

Objective: To examine the impact of a new health-information technology intervention (FAST-Feedback) that provides patients with immediate, personalized, guideline-based feedback regarding tobacco use, physical activity, and HRQoL, and encourages patients to initiate discussions regarding these topics with their primary care physician.

Post-traumatic stress symptoms in cancer survivors: relationship to the impact of cancer scale and other associated risk factors.

Purpose: The purpose of this study was to determine the prevalence of post-traumatic stress symptoms in a sample of cancer survivors and to investigate their association with the impact of cancer, depressive symptoms, and social support.

Methods: We administered a survey to participants in a cancer survivor registry. It included: Post-Traumatic Stress Disorder Checklist-Civilian version (PCL-C), Impact of Cancer Scale (IOC) v.

Examining the role of patient experience surveys in measuring health care quality.

Patient care experience surveys evaluate the degree to which care is patient-centered. This article reviews the literature on the association between patient experiences and other measures of health care quality. Research indicates that better patient care experiences are associated with higher levels of adherence to recommended prevention and treatment processes, better clinical outcomes, better patient safety within hospitals, and less health care utilization.

Development and evaluation of a measure to assess restorative sleep.

Background: There are validated measures assessing insomnia and disturbed sleep, but few psychometrically sound instruments to assess perceptions of the restorative or inadequate properties of sleep are available.

Study Objectives: To develop and evaluate a new instrument, the Restorative Sleep Questionnaire (RSQ).

Design And Setting: Focus groups were conducted using participants with and without nonrestorative sleep complaints.

Development and evaluation of the CAHPS (Consumer Assessment of Healthcare Providers and Systems) survey for in-center hemodialysis patients.

Background: The US Centers for Medicare & Medicaid Services assess patient experiences of care as part of the end-stage renal disease prospective payment system and Quality Incentive Program. This article describes the development and evaluation of the Consumer Assessment of Healthcare Providers and Systems (CAHPS) In-Center Hemodialysis Survey.

Study Design: We conducted formative research to generate survey questions and performed statistical analyses to evaluate the survey's measurement properties.

Evaluation of the consumer assessment of healthcare providers and systems in-center hemodialysis survey.

Background And Objectives: The US Centers for Medicare and Medicaid Services (CMS) End Stage Renal Disease Prospective Payment System and Quality Incentive Program requires that dialysis centers meet predefined criteria for quality of patient care to ensure future funding. The CMS selected the Consumer Assessment of Healthcare Providers and Systems In-Center Hemodialysis (CAHPS-ICH) survey for the assessment of patient experience of care. This analysis evaluated the psychometric properties of the CAHPS-ICH survey in a sample of hemodialysis patients.

Overview of classical test theory and item response theory for the quantitative assessment of items in developing patient-reported outcomes measures.

Background: The US Food and Drug Administration's guidance for industry document on patient-reported outcomes (PRO) defines content validity as "the extent to which the instrument measures the concept of interest" (FDA, 2009, p. 12). According to Strauss and Smith (2009), construct validity "is now generally viewed as a unifying form of validity for psychological measurements, subsuming both content and criterion validity" (p.

Evaluating the psychometric properties of the CAHPS Patient-centered Medical Home survey.

Objective: The goal of this study was to evaluate the reliability and validity of the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Patient-Centered Medical Home (PCMH) survey.

Methods: We conducted a field test of the CAHPS PCMH survey with 2740 adults. We collected information by mail (n = 1746), telephone (n = 672), and from the Web (n = 322) from 6 sites of care affiliated with a West Coast staff model health maintenance organization.

GERD symptoms in the general population: prevalence and severity versus care-seeking patients.

Background: Prior estimates suggest that up to 40% of the US general population (GP) report symptoms of gastroesophageal reflux disease (GERD). However, symptoms in the GP versus patients seeking care for gastrointestinal (GI) complaints have not been compared. We estimated the prevalence and severity of GERD symptoms in the GP versus GI patients, and identified predictors of GERD severity.

Construct validity of the Patient-Reported Outcomes Measurement Information System gastrointestinal symptom scales in systemic sclerosis.

Objective: Gastrointestinal (GI) involvement is common in patients with systemic sclerosis (SSc; scleroderma). The Patient-Reported Outcomes Measurement Information System (PROMIS) GI symptom item bank captures upper and lower GI symptoms (reflux, disrupted swallowing, nausea/vomiting, belly pain, gas/bloating/flatulence, diarrhea, constipation, and fecal incontinence). The objective of this study was to evaluate the construct validity of the PROMIS GI bank in SSc.

Improving Diabetes Health Literacy by Animation.

Purpose And Scope: To produce a Spanish/English animated video about diabetes; to qualitatively assess cultural and linguistic appropriateness; and to test effectiveness at improving diabetes health literacy among Latino/Hispanics.

Methods: Participatory research and animation production methods guided development of the video. Cultural appropriateness was assessed through focused discussion group methods.

Should linking replace regression when mapping from profile-based measures to preference-based measures?

Background: Profile instruments are frequently used to assess health-related quality of life and other patient-reported outcomes. However, preference-based measures are required for health-economic cost-utility evaluations.

Results: Although regression-based approaches are commonly used to map from profile measures to preference measures, we show that this results in biased estimates because of regression to the mean.

Depressed or not depressed: untangling symptoms of depression in patients hospitalized with coronary heart disease.

Background: Assessing depression in patients hospitalized with coronary heart disease is clinically challenging because depressive symptoms are often confounded by poor somatic health.

Objective: To identify symptom clusters associated with clinical depression in patients hospitalized with coronary heart disease.

Method: Secondary analyses of 3 similar data sets for hospitalized patients with coronary heart disease who had diagnostic screening for depression (99 depressed, 224 not depressed) were done.

Development of a preference-based index from the National Eye Institute Visual Function Questionnaire-25.

Importance: Understanding how individuals value health states is central to patient-centered care and to health policy decision making. Generic preference-based measures of health may not effectively capture the impact of ocular diseases. Recently, 6 items from the National Eye Institute Visual Function Questionnaire-25 were used to develop the Visual Function Questionnaire-Utility Index health state classification, which defines visual function health states.

Demographic differences in health preferences in the United States.

Background: The United States has a culturally and demographically diverse populace, and the aim of this study was to examine differences in health preferences by sex, age, ethnicity, and race.

Methods: We assessed preferences for health outcomes defined by the PROMIS-29 survey in a sample of the US population. On the basis of the survey's 540 paired-comparisons trading off lifespan and 7 domains of health-related quality of life (HRQoL), we compared the choices between men and women, adults age 18-54 years and 55 years and older, Hispanics and non-Hispanics, and non-Hispanic blacks and whites.

Development of an online library of patient-reported outcome measures in gastroenterology: the GI-PRO database.

Objectives: Because gastrointestinal (GI) illnesses can cause physical, emotional, and social distress, patient-reported outcomes (PROs) are used to guide clinical decision making, conduct research, and seek drug approval. It is important to develop a mechanism for identifying, categorizing, and evaluating the over 100 GI PROs that exist. Here we describe a new, National Institutes of Health (NIH)-supported, online PRO clearinghouse-the GI-PRO database.