Article

Representativeness of the Patient-Reported Outcomes Measurement Information System Internet panel

UCLA Department of Medicine, Division of General Internal Medicine & Health Services Research, University of California-Los Angeles, 911 Broxton Plaza, Los Angeles, CA 90095, USA.
Journal of clinical epidemiology (Impact Factor: 5.48). 11/2010; 63(11):1169-78. DOI: 10.1016/j.jclinepi.2009.11.021
Source: PubMed

ABSTRACT To evaluate the Patient-Reported Outcomes Measurement Information System (PROMIS), which collected data from an Internet polling panel, and to compare PROMIS with national norms.
We compared demographics and self-rated health of the PROMIS general Internet sample (N=11,796) and one of its subsamples (n=2,196) selected to approximate the joint distribution of demographics from the 2000 U.S. Census, with three national surveys and U.S. Census data. The comparisons were conducted using equivalence testing with weights created for PROMIS by raking.
The weighted PROMIS population and subsample had similar demographics compared with the 2000 U.S. Census, except that the subsample had a higher percentage of people with higher education than high school. Equivalence testing shows similarity between PROMIS general population and national norms with regard to body mass index, EQ-5D health index (EuroQol group defined descriptive system of health-related quality of life states consisting of five dimensions including mobility, self-care, usual activities, pain/discomfort, anxiety/depression), and self-rating of general health.
Self-rated health of the PROMIS general population is similar to that of existing samples from the general U.S. population. The weighted PROMIS general population is more comparable to national norms than the unweighted population with regard to subject characteristics. The findings suggest that the representativeness of the Internet data is comparable to those from probability-based general population samples.

Full-text

Available from: Richard Gershon, May 29, 2015
0 Followers
 · 
75 Views
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: OBJECTIVE : The present study investigates the clinical interpretability of the Pediatric Quality of Life Inventory™ (PedsQL™) Gastrointestinal Symptoms Scales and Worry Scales in pediatric patients with functional gastrointestinal disorders or organic gastrointestinal diseases in comparison with healthy controls. METHODS : The PedsQL™ Gastrointestinal Scales were completed by 587 patients with gastrointestinal disorders/diseases and 685 parents, and 513 healthy children and 337 parents. Minimal important difference (MID) scores were derived from the standard error of measurement (SEM). Cut-points were derived based on one and two standard deviations (SDs) from the healthy reference means. RESULTS : The percentages of patients below the scales' cut-points were significantly greater than the healthy controls (most p values ≤ .001). Scale scores 2 SDs from the healthy reference means were within the range of scores for pediatric patients with a gastrointestinal disorder. MID values were generated using the SEM. CONCLUSIONS: The findings support the clinical interpretability of the new PedsQL™ Gastrointestinal Symptoms Scales and Worry Scales. © The Author 2015. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.
    Journal of Pediatric Psychology 02/2015; DOI:10.1093/jpepsy/jsv005 · 2.91 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: The concept of health-related quality of life has a long history in the field of oncology treatment and research. We present a brief history of how the concept has evolved in oncology and the sentinel events in that process. We then focus on advances in measurement science as applied to health-related quality of life measures and argue that a compelling new set of measurement tools is now available, including brief, generic measures with good psychometric qualities (exemplified by the new PROMIS measures and the possibility of a common metric spanning all diseases). The last section of the paper turns to emerging opportunities for these measures, including in clinical trials, healthcare reform, and regulatory deliberations. Our conclusion is that health-related quality of life is more important today than it has ever been, and that the time has come for an even wider adoption of the new measures. (PsycINFO Database Record (c) 2015 APA, all rights reserved).
    American Psychologist 02/2015; 70(2):175-185. DOI:10.1037/a0037821 · 6.87 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: Objective To present the design and preliminary results of a pilot study to investigate the use of opt-in Internet panel surveys for behavioral health surveillance. Introduction Today, surveyors in both the private and public sectors are facing considerable challenges with random digit dialed (RDD) landline telephone samples. The population coverage rates for landline telephone surveys are being eroded by wireless-only households, portable telephone numbers, telecommunication barriers (e.g., call forwarding, call blocking and pager connections), technological barriers (call-blocking, busy circuits) and increased refusal rates and privacy concerns. Addressing these issues increasingly drives up the costs associated with dual-frame telephone surveys designed to be representative of the target population as well as hinders their ability to be fully representative of the adult population of each state and territory in the United States. In an effort to continue to meet these challenges head on and assist state and territorial public health professionals in the continued collection of data that are representative of their respective populations, novel approaches to behavioral health surveillance need continued examination. Both private and public sector researchers are evaluating the use of Internet opt-in panels to augment dual-frame RDD survey methods. Compared to dual-frame RDD, opt-in Internet panels offer lower costs, quick data collection and dissemination, and the ability to gather additional data on panelists over time. However, as with dual-frame RDD, this mode has similar challenges with coverage error and non-response. Nevertheless, survey methodologists are moving forward and exploring ways to reduce or eliminate biases between the sample and the target population. Methods A collaborative pilot project was designed to assess the feasibility and accuracy of opt-in Internet panel surveys for behavioral health surveillance. This pilot project is a collaboration between the CDC, four state departments of health, opt-in Internet panel providers and the leads of several large surveys and systems such as the Patient-Reported Outcome Measures Information System (PROMIS) and the Cooperative Congressional Election Study (CCES). Pilot projects were conducted in four states (GA, IL, NY, and TX) and four Metropolitan Statistical Areas (Atlanta, Chicago, New York City, and Houston). Data were collected using three different opt-in Internet panels and sampling methods that differ with respect to recruitment strategy, sample selection and sample matching to the adult population of each geography. A question bank consisting of 80 questions was developed to benchmark with other existing surveys used to assess various public health surveillance measures (e.g., the Behavioral Risk Factor Surveillance System, the PROMIS, National Survey on Drug Use and Health, and the CCES). Results We present comparative analyses that assess the advantages and disadvantages of different opt-in Internet panels sampling methodologies across a range of parameters including cost, geography, timeliness, usability, and ease of use for technology transfer to states and local communities. Recommendations for future efforts in behavioral health surveillance are given based on these results.
    04/2013; 5(1).