Adv Patient Rep Outcomes
March 2025
Objectives: To evaluate the concordance among three sleep disturbance items from the Oswestry Disability Index (ODI), Neck Disability Index (NDI), and the Patient-Reported Outcomes Measurement Information System (PROMIS).
Methods: We examined the effects of item wording in a sample of patients with chronic low back pain (CLBP) and chronic neck pain (CNP) who responded to three measures that included sleep disturbance items. We administered the items at baseline and 3-month follow-up in an observational study of patients in the United States (N=1,020).
Purpose: Goal-concordant care is achieved when treatment is aligned with goals. This study describes patient-reported concordance between care goals and treatment intent in advanced cancer compared to other serious illnesses.
Methods: A post hoc cross-sectional analysis of baseline survey responses was conducted in adult patients enrolled in a multisite trial of advance care planning.
The importance of effective doctor-patient communication is well established; however, rigorous evaluations of its association with patient-reported outcomes among seriously ill patients are needed. We analyzed 2 waves of survey data from adults with serious illnesses in primary care clinics. We administered the Consumer Assessment of Healthcare Providers and Systems (CAHPS) communication scale, Patient-Reported Outcomes Measurement and Information System (PROMIS) global health items, and the PROMIS-29 depression and anxiety scales.
View Article and Find Full Text PDFMed Decis Making
August 2025
ObjectivesThe EQ-5D-5L and Patient-Reported Outcomes Measurement Information System (PROMIS®) preference score (PROPr) are preference-based measures. This study compares mapping and linking approaches to align the PROPr and the PROMIS domains included in PROPr plus Anxiety with EQ-5D-5L item responses and preference scores.MethodsA general population sample of 983 adults completed the online survey.
View Article and Find Full Text PDFJCO Clin Cancer Inform
April 2025
Purpose: Endocrine treatments for patients with hormone-sensitive breast cancer are associated with significant side effects that can negatively affect health-related quality of life and result in treatment discontinuation. The objective of this qualitative study was to obtain feedback from stakeholder clinicians and patients about an online interactive tool that was designed to provide information and visualizations of breast cancer symptoms.
Methods: The online Breast Cancer Symptom Explorer tool was developed to allow patients to visualize trajectories for common symptoms associated with tamoxifen and anastrozole using symptom data from the NSABP B35 breast cancer clinical trial.
To review proposed Whole Person Health (WPH) domains and existing WPH measurement instruments. WPH clearly involves multiple domains (e.g.
View Article and Find Full Text PDFJNCI Cancer Spectr
April 2025
Background: The PRO-CTCAE Measurement System was designed to enhance the quality of the standard toxicity evaluation in clinical trials. We developed a substudy within NRG-BR004, a phase III clinical trial in patients with newly documented HER2-positive metastatic breast cancer (MBC), to examine the added value and feasibility of frequent PRO-CTCAE data collection.
Methods: Patients were asked to complete 23 PRO-CTCAE items assessing 12 symptoms.
Clin Psychol (New York)
September 2024
Objectives: To present an example of using vignettes as an external anchor to assess measurement equivalence for patient experience measures.
Background: Evaluating measurement equivalence and differences in scale use is helpful for identifying disparities in patient experience based on patient surveys. External anchors, often in the form of scored vignettes, provide an attractive approach to examining differences in scale use but are not commonly used.
Expert Rev Pharmacoecon Outcomes Res
April 2025
Introduction: Patient-reported experience measures (PREMs) are patient reports about their healthcare, whereas patient-reported outcome measures (PROMs) are reports about their functioning and well-being regarding physical, mental, and social health. We provide a perspective on using PREMs and PROMs in ambulatory healthcare.
Areas Covered: We conducted a narrative review of the literature about using PREMs and PROMs in research and clinical practice, identified challenges and possibilities for addressing them, and provided suggestions for future research and clinical practice.
Completing self-administered patient experience surveys is challenging for many patients. We randomized adult patients receiving care from an urban safety net provider to complete the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Clinician and Group Survey 3.1 (CG-CAHPS 3.
View Article and Find Full Text PDFThe Retirement Knowledge Scale (RKS) consists of 10 questions that assess three aspects of financial planning for retirement: reflection about retirement plans, engagement with information on retirement preparedness, and evaluation of retirement preparedness. The RKS was administered to 1350 adults 50 and older in the Health and Retirement Study (HRS) as an experimental module for the 2020 wave along with the "Big Three" questions of financial literacy that assess knowledge about inflation, interest rate, and risk. Results of the study provide support for the reliability of the RKS scales in the full sample and separately for non-retired and retired adults.
View Article and Find Full Text PDFThere is increasing interest in measuring "whole person" health and deriving an overall summary score. Underlying physical and mental health dimensions have been found consistently in prior studies of self-reported health, but it is unclear whether a single underlying health factor is supported across health domains. We examine the dimensionality of nine domains from the Patient-Reported Outcomes Measurement Information System (PROMIS)-29+2 profile measure, the PROMIS social isolation scale, the Personal Wellbeing Index, and the EQ-5D-5L preference score in a sample of 1,256 adults with back pain in the United States: mean age was 55 (range 18-94), 52% female, 74% non-Hispanic White, 61% were married or living with a spouse, and the highest level of education completed for 35% of the sample was a high school degree or general education diploma.
View Article and Find Full Text PDFInteract J Med Res
November 2024
Background: Surveys of internet panels such as Amazon's Mechanical Turk (MTurk) are common in health research. Nonresponse in longitudinal studies can limit inferences about change over time.
Objective: This study aimed to (1) describe the patterns of survey responses and nonresponse among MTurk members with back pain, (2) identify factors associated with survey response over time, (3) assess the impact of nonresponse on sample characteristics, and (4) assess how well inverse probability weighting can account for differences in sample composition.
Med Care
December 2024
There is growing interest in moving away from a reductionistic view of the person and the health services they need to focus on improving the health of the whole person. However, there needs to be agreement about what this focus entails and how to measure its achievement. From this perspective, we offer suggestions for moving the measurement discussion forward.
View Article and Find Full Text PDFQual Life Res
January 2025
Purpose: Preference-based summary scores are used to quantify values, differences, and changes in health-related quality of life (HRQoL) that can be used for cost-effectiveness analyses. The PROMIS-Preference (PROPr) measure is a preference-based summary score comprised of 7 PROMIS domains. The PROMIS-16 is a new PROMIS profile instrument.
View Article and Find Full Text PDFPurpose: This longitudinal study evaluates whether the Patient-Reported Outcomes Measurement and Information System (PROMIS)-16 domains capture average change over time comparable to the PROMIS-29 + 2 and have similar associations with change in overall health rating and two disability indices.
Methods: Data were collected using Amazon's Mechanical Turk at baseline, 3 months, and 6 months among individuals reporting chronic low back pain. The analytic sample includes respondents who completed baseline and at least one follow-up assessment (N = 1137).
J Gen Intern Med
April 2025
Background: The Health Insurance Portability and Accountability Act (HIPAA) aims to safeguard patient information; however, complex legal language may lead to confusion and mistrust, and hinder enrollment in clinical trials.
Objective: To evaluate the effect of a standard HIPAA authorization included in mailed survey packets on study enrollment for a multi-site pragmatic trial.
Design: This study is nested within an advance care planning pragmatic trial at 50 primary care clinics across three University of California (UC) Health Systems.
Patient experience is a key aspect of care quality. Since the 2007 release of the Consumer Assessment of Healthcare Providers and Systems Clinician and Group (CG-CAHPS) survey, no systematic review of factors associated with CG-CAHPS scores has been reported. We reviewed 52 peer-reviewed English language articles published in the United States using CG-CAHPS data.
View Article and Find Full Text PDFArch Phys Med Rehabil
March 2025
Objective: To generate crosswalk equations and tables for 4 pain impact measures: the Impact Stratification Score (ISS), Oswestry Disability Index (ODI), Roland-Morris Disability Questionnaire (RMDQ), and the Pain, Enjoyment of Life and General Activity Scale (PEG).
Design: Cross-sectional survey assessing demographics and pain impact. Crosswalks were developed using item-response theory (IRT) cocalibrations and linear regressions between the ISS, ODI, RMDQ, and PEG.
Interpretation of patient-reported outcome (PRO) scores has been supported by identifying score thresholds or ranges that indicate clinical importance. There has been a recent focus on the estimation of meaningful within patient change (MWPC). While much attention has been focused on anchor-based methods, some researchers prefer that a lower bound to these estimates should exceed a change score that could be observed due to measurement error alone as a safeguard against misclassifying individual patients as changed when they have not.
View Article and Find Full Text PDFBackground: The mechanisms through which acculturation influences the onset of cognitive impairment and dementia are not well understood, especially among older Hispanics.
Objective: To investigate whether inflammation and psycho-behavioral factors mediate the relationship between acculturation and incident dementia among older Mexican Americans.
Methods: We analyzed the Sacramento Area Latino Study on Aging (1998-2007, SALSA), a longitudinal study (N = 1,194) with 10 years of follow-up, and used g-computation for mediation analysis with pooled logistic regression to evaluate whether acculturation (assessed by the Revised Acculturation Rating Scale for Mexican Americans [ARSMA-II]) affected dementia or cognitive impairment but not dementia (CIND) through inflammation (i.