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David Cella,1 Ron D Hays2 1Department of Medical Social Sciences, Northwestern University, Chicago, IL, USA; 2Department of Medicine, University of California, Los Angeles, Los Angeles, CA, USACorrespondence: David Cella, Email d-cella@northwestern.eduAbstract: We briefly review the history of measuring perceptions of health and quality of life, followed by an examination of conceptual issues related to terminology that have led to potentially conflicting ontologies. Then, we discuss challenges posed by the lack of consensus on common meaning and the proliferation of measures. Next, we suggest a solution grounded in an ontology adopted by the National Institutes of Health (NIH) funded Patient-Reported Outcomes Measurement Information System (PROMIS) project. We conclude by discussing issues associated with mapping the PROMIS domain framework onto other familiar ontologies and recommend a way forward for PROMIS to provide a sustainable ontological structure to enable coherent common measurement.Keywords: patient-reported outcomes, quality of life, health-related quality of life, ontology, PROMIS®, patient reported outcomes measurement information system

Denise D Quigley,1 Peter J Mendel,1 Zachary S Predmore,2 Alex Y Chen,3 Ron D Hays41RAND Corporation, Santa Monica, CA, 2RAND Corporation, Boston, MA, 3AltaMed Health Services Corporation, 4Division of General Internal Medicine and Health Services Research, UCLA, Los Angeles, CA, USAObjective: To describe how practice leaders used Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Clinician and Group (CG-CAHPS) data in transitioning toward a patient-centered medical home (PCMH).Study design: Interviews conducted at 14 primary care practices within a large urban Federally Qualified Health Center in California.Participants: Thirty-eight interviews were conducted with lead physicians (n=13), site clinic administrators (n=13), nurse supervisors (n=10), and executive leadership (n=2).Results: Seven themes were identified on how practice leaders used CG-CAHPS data for PCMH transformation. CAHPS® was used: 1) for quality improvement (QI) and focusing changes for PCMH transformation; 2) to maintain focus on patient experience; 3) alongside other data; 4) for monitoring site-level trends and changes; 5) to identify, analyze, and monitor areas for improvement; 6) for provider-level performance monitoring and individual coaching within a transparent environment of accountability; and 7) for PCMH transformation, but changes to instrument length, reading level, and the wording of specific items were suggested.Conclusion: Practice leaders used CG-CAHPS data to implement QI, develop a shared vision, and coach providers and staff on performance. They described how CAHPS® helped to improve the patient experience in the PCMH model, including access to routine and urgent care, wait times, provider spending enough time and listening carefully, and courteousness of staff. Regular reporting, reviewing, and discussing of patient-experience data alongside other clinical quality and productivity measures at multilevels of the organization was critical in maximizing the use of CAHPS® data as PCMH changes were made. In sum, this study found that a system-wide accountability and data-monitoring structure relying on a standardized and actionable patient-experience survey, such as CG-CAHPS, is key to supporting the continuous QI needed for moving beyond formal PCMH recognition to maximizing primary care medical home transformation.Keywords: PCMH, performance improvement, accountability, CAHPS®

ObjectivesEvaluating children's oral health status and treatment needs is challenging. We aim to build oral health assessment toolkits to predict Children's Oral Health Status Index (COHSI) score and referral for treatment needs (RFTN) of oral health. Parent and Child toolkits consist of short-form survey items (12 for children and 8 for parents) with and without children's demographic information (7 questions) to predict the child's oral health status and need for treatment.MethodsData were collected from 12 dental practices in Los Angeles County from 2015 to 2016. We predicted COHSI score and RFTN using random Bootstrap samples with manually introduced Gaussian noise together with machine learning algorithms, such as Extreme Gradient Boosting and Naive Bayesian algorithms (using R). The toolkits predicted the probability of treatment needs and the COHSI score with percentile (ranking). The performance of the toolkits was evaluated internally and externally by residual mean square error (RMSE), correlation, sensitivity and specificity.ResultsThe toolkits were developed based on survey responses from 545 families with children aged 2 to 17 y. The sensitivity and specificity for predicting RFTN were 93% and 49% respectively with the external data. The correlation(s) between predicted and clinically determined COHSI was 0.88 (and 0.91 for its percentile). The RMSEs of the COHSI toolkit were 4.2 for COHSI (and 1.3 for its percentile).ConclusionsSurvey responses from children and their parents/guardians are predictive for clinical outcomes. The toolkits can be used by oral health programs at baseline among school populations. The toolkits can also be used to quantify differences between pre- and post-dental care program implementation. The toolkits' predicted oral health scores can be used to stratify samples in oral health research.Knowledge transfer statementThis study creates the oral health toolkits that combine self- and proxy- reported short forms with children's demographic characteristics to predict children's oral health and treatment needs using Machine Learning algorithms. The toolkits can be used by oral health programs at baseline among school populations to quantify differences between pre and post dental care program implementation. The toolkits can also be used to stratify samples according to the treatment needs and oral health status.

OBJECTIVE:To examine child and parent reports about the child's oral health and assess the associations of these reports with clinical assessments of oral health status by dental examiners. METHODS:Surveys with 139 items for children and 133 items for parents were administered by Audio Computer-Assisted Self-Interview Software. In addition, the Children's Oral Health Status Index (COHSI) was computed from a dental examination. RESULTS:A total of 334 families with children ages 8 to 17 y participated at 12 dental practices in Los Angeles County. Ordinary least squares regression models were estimated separately for child and parent surveys to identify items uniquely associated with the COHSI. Ten of 139 items the children reported regarding their oral health were associated with the COHSI. The strongest associations were found for child's age, aesthetic factors (straight teeth and pleased with teeth), and cognitive factors related to perception of dental appearance (pleased/happy with the look of the child's mouth, teeth, and jaws). Nine of 133 parent items about the child's oral health were associated with the COHSI in the parent model, notably being a single parent, parent's gender, parent born in the United States, pleased or happy with the look of their child's teeth, and accessing the Internet. CONCLUSION:These child and parent survey items have potential to be used to assess oral health status for groups of children in programs and practices in lieu of dental screenings. KNOWLEDGE TRANSLATION STATEMENT:The paper's results inform the development of a toolkit that can be used by schools, public health agencies, and dental programs to identify children with low oral health status based on parents' and children's responses to survey items across demographic, physical, mental, and social domains. These survey items can be used to inform parents of the desirability of proactively addressing inadequacies in their child's oral health status, enabling them to more rationally address dental needs.

BackgroundIrritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) patients report similar gastrointestinal (GI) symptoms, yet comparisons of symptom severity between groups and with the general population (GP) are lacking.MethodsWe compared Patient-Reported Outcomes Measurement Information System (PROMIS® ) GI symptom scales measuring gastro-esophageal reflux (GER), disrupted swallowing, diarrhea, bowel incontinence, nausea/vomiting, constipation, belly pain, and gas/bloating in: (i) USA GP sample, (ii) IBS patients, and (iii) IBD patients from tertiary care and community populations. Symptom severity scores were based on T-score metric with mean 50±10 (standard deviation) relative to the GP.Key resultsOf 1643 patients enrolled, there were 253 IBS patients (68% F, mean age 45±15 years), 213 IBD patients (46% F, mean age 41±14 years), and 1177 GP subjects (57% F, mean age 46±16 years). IBS patients reported greater severity of GER, disrupted swallowing, nausea/vomiting, belly pain, gas/bloating, and constipation symptoms than their IBD counterparts (all P

BACKGROUND: Chronic pain is prevalent, costly, and clinically vexatious. Clinicians typically use a trial-and-error approach to treatment selection. Repeated crossover trials in a single patient (n-of-1 trials) may provide greater therapeutic precision. N-of-1 trials are the most direct way to estimate individual treatment effects and are useful in comparing the effectiveness and toxicity of different analgesic regimens. The goal of the PREEMPT study is to test the 'Trialist' mobile health smartphone app, which has been developed to make n-of-1 trials easier to accomplish, and to provide patients and clinicians with tools for individualizing treatments for chronic pain. METHODS/DESIGN: A randomized controlled trial is being conducted to test the feasibility and effectiveness of the Trialist app. A total of 244 participants will be randomized to either the Trialist app intervention group (122 patients) or a usual care control group (122 patients). Patients assigned to the Trialist app will work with their clinicians to set up an n-of-1 trial comparing two pain regimens, selected from a menu of flexible options. The Trialist app provides treatment reminders and collects data entered daily by the patient on pain levels and treatment side effects. Upon completion of the n-of-1 trial, patients review results with their clinicians and develop a long-term treatment plan. The primary study outcome (comparing Trialist to usual care patients) is pain-related interference with daily functioning at 26 weeks. DISCUSSION: Trialist will allow patients and clinicians to conduct personalized n-of-1 trials. In prior studies, n-of-1 trials have been shown to encourage greater patient involvement with care, which has in turn been associated with better health outcomes. mHealth technology implemented using smartphones may offer an efficient means of facilitating n-of-1 trials so that more patients can benefit from this approach. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02116621 , first registered 15 April 2014.

Purpose: To elicit perceptions of oral health in children and adolescents as an initial step in the development of oral health item banks for the Patient-Reported Oral Health Outcomes Measurement Information System project. Methods: We conducted focus groups with ethnically, socioeconomically, and geographically diverse youth (8–12, 13–17 years) to identify perceptions of oral health status. We performed content analysis, including a thematic and narrative analysis, to identify important themes. Results: We identified three unique themes that the youth associated with their oral health status: (1) understanding the value of maintaining good oral health over the life course, with respect to longevity and quality of life in the adult years; (2) positive association between maintaining good oral health and interpersonal relationships at school, and dating, for older youth; and (3) knowledge of the benefits of orthodontic treatment to appearance and positive self-image, while holding a strong view as to the discomfort associated with braces. Conclusions: The results provide valuable information about core domains for the oral health item banks to be developed and generated content for new items to be developed and evaluated with cognitive interviews and in a field test.

Purpose: To evaluate the reliability and construct validity of measures from the Patient-Reported Outcomes Measurement Information System® (PROMIS®) for patients with heart failure before and after heart transplantation. Methods: We assessed reliability of the PROMIS short forms using Cronbach’s alpha and the average marginal reliability. To assess the construct validity of PROMIS computerized adaptive tests and short-form measures, we calculated Pearson product moment correlations between PROMIS measures of physical function, fatigue, depression, and social function and existing PRO measures of similar domains (i.e., convergent validity) as well as different domains (i.e., discriminate validity) in patients with heart failure awaiting heart transplant. We evaluated the responsiveness of these measures to change after heart transplant using effect sizes. Results: Forty-eight patients were included in the analyses. Across the many domains examined, correlations between conceptually similar domains were larger than correlations between different domains of health, demonstrating construct validity. Health status improved substantially after heart transplant (standardized effect sizes, 0.63–1.24), demonstrating the responsiveness of the PROMIS measures. Scores from the computerized adaptive tests and the short forms were similar. Conclusions: This study provides evidence for the reliability and construct validity (including responsiveness to change) of four PROMIS domains in patients with heart failure before and after heart transplant. PROMIS measures are a reasonable choice in this context and will facilitate comparisons across studies and health conditions.

Background: Global health measures represent an attractive option for researchers and clinicians seeking a brief snapshot of a patient’s overall perspective on his or her health. Because scores on different global health measures are not comparable, comparative effectiveness research (CER) is challenging. Objective: To establish a common reporting metric so that the physical and mental health scores on the Veterans RAND 12-Item Health Survey (VR-12©) can be converted into scores on the corresponding Patient Reported Outcomes Measurement Information System (PROMIS®) Global Health scores. Design: Following a single-sample linking design, participants from an Internet panel completed items from the PROMIS Global Health and VR-12 Health Survey. A common metric was created using analyses based on item response theory (IRT), producing score cross-walk tables for the mental and physical health components of each measure. The linking relationships were evaluated by calculating the standard deviation of differences between the observed and linked PROMIS scores and estimating confidence intervals by sample size. Participants: Participants (N = 2025) were 49 % male and 73 % white; mean age was 46 years. Main Measures: Mental and physical health subscales of the PROMIS Global Health and the VR-12. The mean VR-12 physical component and mental component scores were 45.2 and 46.6, respectively; the mean PROMIS physical and mental health scores were 48.3 and 48.5, respectively. Key Results: We found evidence that the combined set of VR-12 and PROMIS items were relatively unidimensional and that we could proceed with linking. Linking worked better between the physical health than mental health scores using VR-12 item responses (vs. linking based on algorithmic scores). For each of the cross-walks, users can minimize the impact of linking error with modest increases in sample sizes. Conclusions: VR-12 scores can be expressed on the PROMIS Global Health metric to facilitate the evaluation of treatment, including CER. Extending these results to other common measures of global health is encouraged.

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. Methods: We developed the Facilitators of and Barriers to Adherence to Hypertension Treatment Scale (FATS) with input from focus groups with 20 AA women. A total of 147 AA women from a federally funded inner-city clinic in Los Angeles were enrolled in the study and 70 (48%) completed the survey. Internal consistency reliability was estimated using Cronbach's !. Results: Coefficient ! for the 18-item FATS was .78. In a multivariate regression model, controlling for BP stage, the FATS was significantly associated with the Hill-Bone High Blood Pressure Compliance Scale (standardized " = .35; P = .004), the Enhancing Recovery From Coronary Heart Disease Social Support Inventory (" = .42; P = .001), the and CAGE (cut down on your drinking, annoyed by being criticized for your drinking, guilty about drinking, and eye-opener drink in the morning) alcohol screening instrument (" = j.24; P = .05). Discussion: The FATS is a culturally sensitive measure for assessing adherence to treatment regimens of HBP in AA women. Further study in other samples of AA women is needed to confirm that the FATS adequately assesses facilitators of adherence to regimens for HBP in AA women.

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.2, and measures of social support, income, and long-term effects of cancer. We performed multivariate analyses to estimate associations between PCL-C and other variables. PCL-C score was examined as a continuous dependent variable and categorically. Results Responses were available from 162 cancer survivors. Mean age was 51 years (standard deviation (SD) 16); mean time since diagnosis was 11 years (SD 10). Mean PCL-C score was 27 (SD 9, range 17-64); 29% of the sample scored 30 and above, 13% scored 38 and above, 7% scored 44 and above. Linear regression indicated that PCL-C scores were significantly associated with the IOC negative impact summary scale (NIS) (p < 0.001), depressive symptoms (p = 0.003), less social support (p = 0.02), and lower income (p = 0.03). NIS subscale analyses showed that two subscales, life interference (LI) and worry (W), were significantly correlated with PCL-C score (LI: p < 0.001; W: p = 0.02). Conclusions In this study, the IOC NIS was associated with endorsement of PTSD symptoms. Assessing survivors for PTSD symptoms with the PCL-C could detect those individuals in need of psychosocial support. The IOC may be useful for identifying target areas for interventions to reduce these symptoms among cancer survivors.

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.

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. Methods: A cross-sectional analysis was conducted comparing patients who were stable (n = 100) with those currently experiencing a COPD exacerbation (n = 85). All PROMIS measures for adults available at the time of the study (2008), disease-targeted and other HRQOL instruments, health literacy, percent predicted FEV1, and a 6-min walk distance were assessed when patients were considered clinically stable. Results: Stable COPD patients reported significantly (p ≤ 0.05) better health-related quality of life on PROMIS domains than patients experiencing an exacerbation. PROMIS domain scores were significantly (p ≤ 0.01) correlated with each of legacy measures. Six-min walk scores were most highly correlated with the PROMIS physical function domain scores (r = 0.53) followed by the fatigue (r = −0.26), social (r = 0.24) and to a lesser extent depression (r = −0.23), and anxiety (r = −0.22) domain scores. Percent predicted FEV1 score was significantly associated with PROMIS physical function scores (r = 0.27). Conclusion: This study provides support for the validity of the PROMIS measures in COPD patients.

Background: Cancer-related fatigue (CRF) is a prominent clinical problem. There are calls for multi-modal interventions.Methods: We assessed the feasibility of delivering patient education integrated with acupuncture for relief of CRF in a pilot randomized controlled trial (RCT) with breast cancer survivors using usual care as control. Social cognitive and integrative medicine theories guided integration of patient education with acupuncture into a coherent treatment protocol. The intervention consisted of two parts. First, patients were taught to improve self-care by optimizing exercise routines, improving nutrition, implementing some additional evidence-based cognitive behavioral techniques such as stress management in four weekly 50-minute sessions. Second, patients received eight weekly 50-minute acupuncture sessions. The pre-specified primary outcome, CRF, was assessed with the Brief Fatigue Inventory (BFI). Secondary outcomes included three dimensions of cognitive impairment assessed with the FACT-COGv2.Results: Due to difficulties in recruitment, we tried several methods that led to the development of a tailored recruitment strategy: we enlisted oncologists into the core research team and recruited patients completing treatment from oncology waiting rooms. Compared to usual care control, the intervention was associated with a 2.38-point decline in fatigue as measured by the BFI (90% Confidence Interval from 0.586 to 5.014; p

Purpose: The purpose of this study was to evaluate the reliability and validity of the Thai Quality of Life in Children (ThQLC) and compare it with the Pediatric Quality of Life Inventory (PedsQL™ 4.0) in a sample of children receiving long-term HIV care in Thailand. Methods: The ThQLC and the PedsQL™ 4.0 were administered to 292 children with HIV infection aged 8-16 years. Clinical parameters such as the current viral load, CD4 percent, and clinical staging were obtained by medical record review. Results: Three out of five ThQLC scales and three out of four PedsQL™ 4.0 scales had acceptable internal consistency reliability (i.e., Cronbach's alpha >0.70). Cronbach's alpha values of each scale ranged from 0.52 to 0.75 and 0.57 to 0.75 for the ThQLC and the PedsQL™ 4.0, respectively. Corresponding scales (physical functioning, emotional well-being, social functioning, and school functioning) of the ThQLC and the PedsQL™ 4.0 correlated substantially with one another (r = 0.47, 0.67, 0.59 and 0.56, respectively). Both ThQLC and PedsQL™ 4.0 overall scores significantly correlated with the child's self-rated severity of the illness (r = -0.23 for the ThQLC and -0.28 for the PedsQL™ 4.0) and the caregiver's rated overall quality of life (r = 0.07 for the ThQLC and 0.13 for the PedsQL™ 4.0). The overall score of the ThQLC correlated with clinical and immunologic categories of the United State-Centers for Disease Control and Prevention (US-CDC) classification system (r = -0.12), while the overall score of the PedsQL™ 4.0 significantly correlated with the number of disability days (r = -0.12) and CD4 percent (r = -0.15). However, the overall score from both instruments were not significantly different by clinical stages of HIV disease. A multitrait-multimethod analysis results demonstrated that the average convergent validity and off-diagonal correlations were 0.58 and 0.45, respectively. Discriminant validity was partially supported with 62% of validity diagonal correlations exceeding correlations between different domains (discriminant validity successes). The Hays-Hayashi MTMM quality index was 0.61. Multivariate regression analysis revealed that the ThQLC physical functioning scale provided unique information in predicting child self-rated severity of the illness and overall quality of life beyond that explained by the PedsQL™ 4.0 in Thai children with HIV infection. Conclusions: We found evidence in support of the reliability and validity of the ThQLC and the PedsQL™ 4.0 for measuring the health-related quality of life of Thai children with HIV infection. © 2010 The Author(s).

Preference-based health index scores provide a single summary score assessing overall health-related quality of life and are useful as an outcome measure in clinical studies, for estimating quality-adjusted life years for economic evaluations, and for monitoring the health of populations. We predicted EuroQoL (EQ-5D) index scores from patient-reported outcomes measurement information system (PROMIS) global items and domain item banks. This was a secondary analysis of health outcome data collected in an internet survey as part of the PROMIS Wave 1 field testing. For this study, we included the 10 global items and the physical function, fatigue, pain impact, anxiety, and depression item banks. Linear regression analyses were used to predict EQ-5D index scores based on the global items and selected domain banks. The regression models using eight of the PROMIS global items (quality of life, physical activities, mental health, emotional problems, social activities, pain, and fatigue and either general health or physical health items) explained 65% of the variance in the EQ-5D. When the PROMIS domain scores were included in a regression model, 57% of the variance was explained in EQ-5D scores. Comparisons of predicted to actual EQ-5D scores by age and gender groups showed that they were similar. EQ-5D preference scores can be predicted accurately from either the PROMIS global items or selected domain banks. Application of the derived regression model allows the estimation of health preference scores from the PROMIS health measures for use in economic evaluations.

BackgroundUnderstanding older adults' expectations regarding aging is important for both clinicians and policy-makers.Objectives1) To identify the content for a survey to measure expectations regarding aging; 2) to qualitatively compare older adults' and physicians' expectations regarding aging.SettingThree senior centers and one university-based internal medicine faculty practice.ParticipantsForty-nine adults (mean age 78 years); 11 primary care clinicians (mean age 37 years).MeasurementsA facilitator conducted five focus groups of older adults and two of physicians using a standardized script designed to elicit expectations regarding aging. Qualitative analysis by two independent reviewers identified domains of expectations, with a 3rd reviewer used to resolve discrepancies. A corresponding coding scheme was applied to each line of the transcripts. Content and frequency of expectations regarding aging and beliefs regarding care seeking were examined and compared.ResultsContent analysis identified 26 domains of expectations regarding aging. Each of the seven most frequently mentioned domains of expectations was mentioned by at least 50% of participants. Of 760 unique statements coded, the most frequently described domains in both the older adult and physician groups were physical function, cognitive function, social function, pain, and sexual function. Older adults differed from physicians by describing five mental-health related domains: anxiety, emotional-well-being, happiness, sleep, and length of life/death.ConclusionsUsing focus groups of older adults and physicians, we identified consistent content for a closed-ended patient-centered survey to measure expectations regarding aging. Further study should determine whether physicians address mental health aspects of aging valued by older persons.

ObjectiveTo develop and test the psychometric properties of a 25-item version of the National Eye Institute Visual Function Questionnaire (NEI VFQ-25).DesignProspective observational cohort study of persons with 1 of 5 chronic eye diseases or low vision who were scheduled for nonurgent visits in ophthalmology practices and a reference sample of persons without eye disease.SettingEleven university-based ophthalmology practices and the NEI Clinical Center.PatientsEligible participants had to have 1 of the following eye conditions: age-related cataracts, age-related macular degeneration, diabetic retinopathy, primary open-angle glaucoma, cytomegalovirus retinitis, or low vision from any cause. Seven of the 12 sites also enrolled persons in a reference sample. Reference sample participants had no evidence of underlying eye disease but were scheduled for either screening eye examinations or correction of refractive error. All eligible persons had to be 21 years or older, English speaking, and cognitively able to give informed consent and participate in a health status interview.Measurements and main resultsTo provide the data needed to create the NEI VFQ-25, all subjects completed an interview that included the 51-item NEI VFQ. Estimates of internal consistency indicate that the subscales of the NEI VFQ-25 are reliable. The validity of the NEI VFQ-25 is supported by high correlations between the short- and long-form versions of the measure, observed between-group differences in scores for persons with different eye diseases of varying severity, and the moderate-to-high correlations between the NEI VFQ-25 subscales that have the most to do with central vision and measured visual acuity.ConclusionsThe reliability and validity of the NEI VFQ-25 are comparable to those of the 51-item NEI VFQ field test version of the survey. This shorter version will be more feasible in settings such as clinical trials where interview length is a critical consideration. In addition, preliminary analyses indicate that the psychometric properties of the NEI VFQ-25 are robust for the eye conditions studied; this suggests that the measure will provide reproducible and valid data when used across multiple conditions of varying severity.

ObjectiveTo develop and test the psychometric properties of a 25-item version of the National Eye Institute Visual Function Questionnaire (NEI VFQ-25).DesignProspective observational cohort study of persons with 1 of 5 chronic eye diseases or low vision who were scheduled for nonurgent visits in ophthalmology practices and a reference sample of persons without eye disease.SettingEleven university-based ophthalmology practices and the NEI Clinical Center.PatientsEligible participants had to have 1 of the following eye conditions: age-related cataracts, age-related macular degeneration, diabetic retinopathy, primary open-angle glaucoma, cytomegalovirus retinitis, or low vision from any cause. Seven of the 12 sites also enrolled persons in a reference sample. Reference sample participants had no evidence of underlying eye disease but were scheduled for either screening eye examinations or correction of refractive error. All eligible persons had to be 21 years or older, English speaking, and cognitively able to give informed consent and participate in a health status interview.Measurements and main resultsTo provide the data needed to create the NEI VFQ-25, all subjects completed an interview that included the 51-item NEI VFQ. Estimates of internal consistency indicate that the subscales of the NEI VFQ-25 are reliable. The validity of the NEI VFQ-25 is supported by high correlations between the short- and long-form versions of the measure, observed between-group differences in scores for persons with different eye diseases of varying severity, and the moderate-to-high correlations between the NEI VFQ-25 subscales that have the most to do with central vision and measured visual acuity.ConclusionsThe reliability and validity of the NEI VFQ-25 are comparable to those of the 51-item NEI VFQ field test version of the survey. This shorter version will be more feasible in settings such as clinical trials where interview length is a critical consideration. In addition, preliminary analyses indicate that the psychometric properties of the NEI VFQ-25 are robust for the eye conditions studied; this suggests that the measure will provide reproducible and valid data when used across multiple conditions of varying severity.

BackgroundOn-line physician education is increasing, but its efficacy in comparison with existing self-study methods is unknown.ObjectiveTo compare knowledge, learning efficiency, and learner satisfaction produced by self-study of World Wide Web-based and print-based guidelines for care after acute myocardial infarction.DesignRandomized, controlled trial.Setting12 family medicine and internal medicine residency programs at four universities.Participants162 residents.InterventionsIn proctored sessions, participants were randomly assigned to study from printed materials or from SAGE (Self-Study Acceleration with Graphic Evidence), a Web-based tutorial system. Both methods used identical self-assessment questions and answers and guideline text, but SAGE featured hyperlinks to specific guideline passages and graphic evidence animations.MeasurementsScores on multiple-choice knowledge tests, score gain per unit of study time, and ratings on a learner satisfaction scale.ResultsImmediate post-test scores on a 20-point scale were similar in the SAGE and control groups (median score, 15.0 compared with 14.5; P>0.2), but SAGE users spent less time studying (median, 27.0 compared with 38.5 minutes; P

ObjectiveTo test the reliability and validity of the 51-item Field Test Version of the National Eye Institute Visual Function Questionnaire (NEI-VFQ) across 5 common chronic eye conditions.DesignProspective observational cohort study of persons with 1 of 5 chronic eye diseases who were scheduled for nonurgent visits in ophthalmology practices or had low vision from any cause, and a reference sample of persons without eye disease.SettingSix university-based ophthalmology practices and the National Eye Institute Clinical Center, Bethesda, Md.PatientsEligible participants had to have 1 of the following eye conditions: age-related cataracts, age-related macular degeneration, diabetic retinopathy, primary open-angle glaucoma, cytomegalovirus retinitis, or low vision from any cause. Each of the 7 sites also enrolled persons in a reference sample. Reference sample participants had no evidence of underlying eye disease but were scheduled for either screening eye examinations or correction of refractive error. All eligible persons had to be aged 21 years or older, English speaking, and cognitively able to give informed consent and participate in a health status interview.Measurements and main resultsTo provide the data needed to assess the reliability and validity of the 51-item NEI-VFQ, all subjects completed an interview that consisted of the 51-item NEI-VFQ, the Medical Outcomes Study 36-Item Short-Form Health Survey, and at least 1 measure of vision-targeted functional status. Estimates of internal consistency and test-retest reproducibility indicate that the 51-item NEI-VFQ is reliable. Tests of association with other scales and clinical variables support the construct validity of the survey.ConclusionsIn this cross-sectional study, the 51-item NEI-VFQ seems to be reliable and valid and should be a useful tool for group-level comparisons of vision-targeted, health-related quality of life in clinical research. Additionally, the psychometric properties of the NEI-VFQ were not influenced by the type or severity of the underlying eye disease, suggesting that the measure will provide reproducible and valid data when used across multiple eye conditions.

ObjectiveTo test the reliability and validity of the 51-item Field Test Version of the National Eye Institute Visual Function Questionnaire (NEI-VFQ) across 5 common chronic eye conditions.DesignProspective observational cohort study of persons with 1 of 5 chronic eye diseases who were scheduled for nonurgent visits in ophthalmology practices or had low vision from any cause, and a reference sample of persons without eye disease.SettingSix university-based ophthalmology practices and the National Eye Institute Clinical Center, Bethesda, Md.PatientsEligible participants had to have 1 of the following eye conditions: age-related cataracts, age-related macular degeneration, diabetic retinopathy, primary open-angle glaucoma, cytomegalovirus retinitis, or low vision from any cause. Each of the 7 sites also enrolled persons in a reference sample. Reference sample participants had no evidence of underlying eye disease but were scheduled for either screening eye examinations or correction of refractive error. All eligible persons had to be aged 21 years or older, English speaking, and cognitively able to give informed consent and participate in a health status interview.Measurements and main resultsTo provide the data needed to assess the reliability and validity of the 51-item NEI-VFQ, all subjects completed an interview that consisted of the 51-item NEI-VFQ, the Medical Outcomes Study 36-Item Short-Form Health Survey, and at least 1 measure of vision-targeted functional status. Estimates of internal consistency and test-retest reproducibility indicate that the 51-item NEI-VFQ is reliable. Tests of association with other scales and clinical variables support the construct validity of the survey.ConclusionsIn this cross-sectional study, the 51-item NEI-VFQ seems to be reliable and valid and should be a useful tool for group-level comparisons of vision-targeted, health-related quality of life in clinical research. Additionally, the psychometric properties of the NEI-VFQ were not influenced by the type or severity of the underlying eye disease, suggesting that the measure will provide reproducible and valid data when used across multiple eye conditions.

OBJECTIVE: Develop a culturally appropriate, reliable, and valid survey that can be used by the Choctaw Nation Health Services (CNHS) to compare patients' health care experiences across CNHS clinics, and to support quality improvement efforts. METHODS: We worked with CNHS staff to adapt the CAHPS Clinician and Group Survey for this purpose. We conducted cognitive interviews and a field-test to evaluate the survey. RESULTS: Cognitive testing yielded a survey that covered issues relevant to CNHS patients. Field testing yielded 696 surveys, (58% response rate). Analyses provided support for internal consistency of multi-item scales. Correlations among scales indicate the scales were related to one another but not redundant. DISCUSSION: The CAHPS American Indian Survey is useful for assessing perceptions of care at the clinic level and across different clinics. The close partnership with CNHS helped yield a survey that is scientifically sound, reflects how services are organized and delivered locally, and meets CNHS information needs. [ABSTRACT FROM AUTHOR]

Using data from 335,249 Medicare beneficiaries who responded to the 2007 Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS®) survey, along with data from 22 cognitive interviews, we investigated the reliability and validity of an instrument designed to assess beneficiaries' experiences with their prescription drug plans. Composite measures derived from the instrument had acceptable internal consistency and sufficient planlevel reliability to inform consumer choice, quality improvement, and payor oversight. These measures were positively associated with members' overall rating of the plan and their willingness to recommend the plan. Moreover, each was independently useful in predicting beneficiaries' global ratings of their plan. This instrument can be an important tool for helping beneficiaries to choose a plan that best meets their needs. [ABSTRACT FROM AUTHOR]

Objective. Assigning utilities to hypothetical health states requires that the health states be described in adequate detail, but there is no agreement on exactly how health states should be described. We assess utilities from the general public for health states common in scleroderma (SSc) by describing the health states in writing alone v. with photographs of patients with SSc. Methods. Subjects rated several SSc health states on a 0 to 100 rating scale (RS) and completed computer-assisted time tradeoff (TTO; range, 0.0-1.0) and standard gamble (SG; range, 0.0-1.0) assessments. Half of the subjects were assigned to be shown photographs of patients with SSc health states in addition to written health state descriptions, whereas the other half were given only the written descriptions. Results. Of the 213 participants, 133 (62%) were female, 138 (65%) were Caucasian, and 62 (29%) were African American. Median RS, TTO, and SG scores for 5 SSc health states ranged from 20 to 70, 0.28 to 0.94, and 0.50 to 0.90, respectively. In bivariate analyses, showing pictures was associated with lower RS scores for 2 of 5 health states and lower SG values for all 5 health states (P < 0:05 for comparison of pictures v. no pictures), but with no difference in TTO values. Multivariable analyses revealed negative associations between pictures and SG valuations for the 3 most severe SSc health states (R2 range, 0.04-0.08). Conclusion. Adding pictures of people with SSc to written health state descriptions can affect valuations of SSc health states, although the effect differs by valuation measurement method and by health state severity. [ABSTRACT FROM AUTHOR]

Context: The Centers for Medicare and Medicaid Services will introduce the reporting of patient surveys in 2008. The Consumer Assessment of Health Care Providers and Systems (CAHPS) Hospital Survey contains 18 questions about hospital care. Internal consistency reliability of the discharge information scale is relatively low and some important domains of care are not represented.Objective: To determine whether adding questions increases the reliability and validity of the survey.Data Sources and Study Setting: Surveys of patients at 181 hospitals participating in the California Hospitals Assessment and Reporting Taskforce (CHART), an initiative for voluntary public reporting of hospital performance in California.Study Design: CHART added nine questions to the CAHPS Hospital Survey; two to improve reliability of the discharge information domain, five to create a coordination of care domain, and two relating to interpreter services.Data Collection: Surveys were sent to randomly selected patients from each CHART hospital.Principal Findings: A total of 40,172 surveys were included. Adding the new discharge information questions improved the internal consistency reliability from 0.45 to 0.72 and the hospital-level reliability from 0.75 to 0.81. New coordination of care composites had good internal consistency reliabilities ranging from 0.58 to 0.70 and hospital-level reliabilities ranging from 0.84 to 0.87. The new coordination of care composites were more closely correlated with overall hospital ratings and willingness to recommend than six of the seven original domains.Conclusions: The additional discharge information questions and the new coordination of care questions significantly improved the psychometric properties of the CAHPS Hospital Survey. [ABSTRACT FROM AUTHOR]

The proportion of minority elders with dementia in the United States is projected to rise substantially. This study elicited perceptions of the caregiving experience from informal caregivers of persons with dementia, across different ethnicities. Six focus groups with 47 dementia caregivers of African-American, Chinese-American, EuroAmerican, and Hispanic-American ethnicities were conducted. Caregiving roles, concern about the person with dementia, and unmet information and resource needs were expressed similarly. However, perspectives differed across ethnic groups on stigma surrounding dementia, benefits of caregiving, spirituality/religion to ease caregiving burden, and language barriers and discrimination. Findings suggest that interventions to reduce disparities in dementia care quality need to address ethnic variations in caregiving experiences. [ABSTRACT FROM AUTHOR]

The objective of this study was to estimate the variation in the readability of survey items within 2 widely used health-related quality-of-life surveys: the National Eye Institute Visual Functioning Questionnaire-25 (VFQ-25) and the Short Form Health Survey, version 2 (SF-36v2). Flesch-Kincaid and Flesch Reading Ease formulas were used to estimate readability. Individual survey item scores and descriptive statistics for each survey were calculated. Variation of individual item scores from the mean survey score was graphically depicted for each survey. The mean reading grade level and reading ease estimates for the VFQ-25 and SF-36v2 were 7.8 (fairly easy) and 6.4 (easy), respectively. Both surveys had notable variation in item readability; individual item readability scores ranged from 3.7 to 12.0 (very easy to difficult) for the VFQ-25 and 2.2 to 12.0 (very easy to difficult) for the SF-36v2. Because survey respondents may not comprehend items with readability scores that exceed their reading ability, estimating the readability of each survey item is an important component of evaluating survey readability. Standards for measuring the readability of surveys are needed. [ABSTRACT FROM AUTHOR]

OBJECTIVE: Hospitals adapt to changing market conditions by exploring new care models that allow them to maintain high quality while containing costs. The authors examined the net cost savings associated with care management by teams of physicians and nurse practitioners, along with daily multidisciplinary rounds and postdischarge patient follow-up. METHODS: One thousand two hundred and seven general medicine inpatients in an academic medical center were randomized to the intervention versus usual care. Intervention costs were compared to the difference in nonintervention costs, estimated by comparing changes between preadmission and postadmission in regression-adjusted costs for intervention versus usual care patients. Intervention costs were calculated by assigning hourly costs to the time spent by different providers on the intervention. Patient costs during the index hospital stay were estimated from administrative records and during the 4-month follow-up by weighting self-reported utilization by unit costs. RESULTS: Intervention costs were $1187 per patient and associated with a significant $3331 reduction in nonintervention costs. About $1947 of the savings were realized during the initial hospital stay, with the remainder attributable to reductions in postdischarge service use. After adjustment for possible attrition bias, a reasonable estimate of the cost offset was $2165, for a net cost savings of $978 per patient. Because health outcomes were comparable for the 2 groups, the intervention was cost-effective. CONCLUSIONS: Wider adoption of multidisciplinary interventions in similar settings might be considered. The savings previously reported with hospitalist models may also be achievable with other models that focus on efficient inpatient care and appropriate postdischarge care. [ABSTRACT FROM AUTHOR]

Objective: To describe translation and cultural adaptation procedures, and examine the degree of equivalence between the Spanish and English versions of the Agency for Healthcare Research and Quality's (AHRQ) Consumer Assessments of Healthcare Providers and Systems (CAHPS) Hospital Survey (H-CAHPS) of patient experiences with care.Data Sources: Cognitive interviews on survey comprehension with 12 Spanish-speaking and 31 English-speaking subjects. Psychometric analyses of 586 responses to the Spanish version and 19,134 responses to the English version of the H-CAHPS survey tested in Arizona, Maryland, and New York in 2003.Study Design: A forward/backward translation procedure followed by committee review and cognitive testing was used to ensure a translation that was both culturally and linguistically appropriate. Responses to the two language versions were compared to evaluate equivalence and assess the reliability and validity of both versions.Data Collection/extraction Methods: Comparative analyses were carried out on the 32 items of the shortened survey version, focusing on 16 items that comprise seven composites representing different aspects of hospital care quality (communication with nurses, communication with doctors, communication about medicines, nursing services, discharge information, pain control, and physical environment); three items that rate the quality of the nursing staff, physician staff, and the hospital overall; one item on intention to recommend the hospital. The other 12 items used in the analyses addressed mainly respondent characteristics. Analyses included item descriptives, correlations, internal consistency reliability of composites, factor analysis, and regression analysis to examine construct validity.Principal Findings: Responses to both language versions exhibit similar patterns with respect to item-scale correlations, factor structure, content validity, and the association between each of the seven qualities of care composites with both the hospital rating and intention to recommend the hospital. Internal consistency reliability was slightly, yet significantly lower for the Spanish-language respondents for five of the seven composites, but overall the composites were generally equivalent across language versions.Conclusions: The results provide preliminary evidence of the equivalence between the Spanish and English versions of H-CAHPS. The translated Spanish version can be used to assess hospital quality of care for Spanish speakers, and compare results across these two language groups. [ABSTRACT FROM AUTHOR]

Objective: To estimate the effect of survey mode (mail versus telephone) on reports and ratings of hospital care.Data Sources/study Setting: The total sample included 20,826 patients discharged from a group of 24 distinct hospitals in three states (Arizona, Maryland, New York). We collected CAHPS data in 2003 by mail and telephone from 9,504 patients, of whom 39 percent responded by telephone and 61 percent by mail.Study Design: We estimated mode effects in an observational design, using both propensity score blocking and (ordered) logistic regression on covariates. We used variables derived from administrative data (either included as covariates in the regression function or used in estimating the propensity score) grouped in three categories: individual characteristics, characteristics of the stay and hospital, and survey administration variables.Data Collection/extraction Methods: We mailed a 66-item questionnaire to everyone in the sample and followed up by telephone with those who did not respond.Principal Findings: We found significant (p<.01) mode effects for 13 of the 21 questions examined in this study. The maximum magnitude of the survey mode effect was an 11 percentage-point difference in the probability of a "yes" response to one of the survey questions. Telephone respondents were more likely to rate care positively and health status negatively, compared with mail respondents. Standard regression-based case-mix adjustment captured much of the mode effects detected by propensity score techniques in this application.Conclusions: Telephone mode increases the propensity for more favorable evaluations of care for more than half of the items examined. This suggests that mode of administration should be standardized or carefully adjusted for. Alternatively, further item development may minimize the sensitivity of items to mode of data collection. [ABSTRACT FROM AUTHOR]

Objectives: To estimate the associations among hospital-level scores from the Consumer Assessments of Healthcare Providers and Systems (CAHPS) Hospital pilot survey within and across different services (surgery, obstetrics, medical), and to evaluate differences between hospital- and patient-level analyses.Data Source: CAHPS Hospital pilot survey data provided by the Centers for Medicare and Medicaid Services.Study Design: Responses to 33 questionnaire items were analyzed using patient- and hospital-level exploratory factor analytic (EFA) methods to identify both a patient-level and hospital-level composite structures for the CAHPS Hospital survey. The latter EFA was corrected for patient-level sampling variability using a hierarchical model. We compared results of these analyses with each other and to separate EFAs conducted at the service level. To quantify the similarity of assessments across services, we compared correlations of different composites within the same service with those of the same composite across different services.Data Collection: Cross-sectional data were collected during the summer of 2003 via mail and telephone from 19,720 patients discharged from November 2002 through January 2003 from 132 hospitals in three states.Principal Findings: Six factors provided the best description of inter-item covariation at the patient level. Analyses that assessed variability across both services and hospitals suggested that three dimensions provide a parsimonious summary of inter-item covariation at the hospital level. Hospital-level factor structures also differed across services; as much variation in quality reports was explained by service as by composite.Conclusions: Variability of CAHPS scores across hospitals can be reported parsimoniously using a limited number of composites. There is at least as much distinct information in composite scores from different services as in different composite scores within each service. Because items cluster slightly differently in the different services, service-specific composites may be more informative when comparing patients in a given service across hospitals. When studying individual-level variability, a more differentiated structure is probably more appropriate. [ABSTRACT FROM AUTHOR]