Validity assessment of the PROMIS fatigue domain among people living with HIV.

PURPOSE: To evaluate psychometric characteristics and cross-sectional and longitudinal validity of the 7-item PROMIS® Fatigue Short Form and additional fatigue items among people living with HIV (PLWH) in a nationally distributed network of clinics collecting patient reported data at the time of routine clinical care. METHODS: Cross-sectional and longitudinal fatigue data were collected from September 2012 through April 2013 across clinics participating in the Centers for AIDS Research Network of Integrated Clinical Systems (CNICS). We analyzed data regarding psychometric characteristics including simulated computerized adaptive testing and differential item functioning, and regarding associations with clinical characteristics. RESULTS: We analyzed data from 1597 PLWH. Fatigue was common in this cohort. Scores from the PROMIS® Fatigue Short Form and from the item bank had acceptable psychometric characteristics and strong evidence for validity, but neither performed better than shorter instruments already integrated in CNICS. CONCLUSIONS: The PROMIS® Fatigue Item Bank is a valid approach to measuring fatigue in clinical care settings among PLWH, but in our analyses did not perform better than instruments associated with less respondent burden.

Weight loss and changes in generic and weight-specific quality of life in obese adolescents.

PURPOSE: To investigate how weight loss correlates with changes in generic and weight-specific quality of life (QoL). METHODS: Youth generic (YQOL-S) and weight-specific instruments (YQOL-W) from 133 youth age 11-19 were analyzed at the beginning and end of 4-week immersion camp sessions known to produce weight loss. Paired samples t tests were used to test mean difference between baseline and final Body Mass Index (BMI) and YQOL-S and YQOL-W scores. YQOL-S and YQOL-W scores were transformed to values between 0 and 100, with higher values indicating better QOL. Cohen's d effect sizes were calculated to assess magnitude of effects. Percent weight loss (as % of baseline weight), change in BMI (baseline kg/m²-follow-up kg/m²), and change in % overweight ((BMI-50th% BMI for age and sex)/50th% BMI for age and sex × 100) were calculated. Multiple regressions were used to model final YQOL scores in the 11-14 and 15-19 age groups as functions of each measure of weight change, sex, age, and baseline YQOL score. RESULTS: Youth experienced significant reductions in BMI (Mean change = 3.7, SD = 1.4, t = 34.1, P < 0.001) and in the other measures of weight change. YQOL-S and YQOL-W scores improved significantly (P < 0.001), and effect sizes were 0.61 and 0.66, respectively. CONCLUSION: Changes in generic and weight-specific quality of life scores are associated with weight loss. The weight-specific measure is slightly more sensitive to weight changes; however, when controlling for modifiers, the YQOL-W remained significantly associated with weight loss, while the generic QoL measure did not.

Use of Cognitive Interviews to Adapt PROMIS Measurement Items for Spanish Speakers Living with HIV.

Purpose. To use cognitive interviewing techniques to assess comprehension of existing Patient-Reported Outcomes Measurement Information System (PROMIS) items among Latinos living with HIV and then refine items based on participant feedback. Methods. Latino monolingual Spanish speakers living with HIV (n = 56) participated in cognitive interviews. Items from four PROMIS domains, including depression, anxiety, fatigue, and alcohol use, were assessed for comprehension. Audiotaped interviews and handwritten notes were subjected to content analysis to identify problems specific to each instrument for each domain. Results. The assessments from the cognitive interviews identified areas for improvement in each domain. We present data on the type of items that were difficult to comprehend and provide examples for how items were refined based on participants' and PROMIS Statistical Coordinating Center (PSCC) feedback. Six out of 48 depression items, 7 out of the 61 anxiety items, 18 out of 42 fatigue items, and 7 out of 44 alcohol use items were found to have poor comprehension. These items were refined based on participant feedback; the items were then submitted to the PSCC for additional guidance on linguistics and grammar to improve comprehension. Conclusions. Cognitive interviews may be used to enhance comprehension of PROMIS items among Latinos.

Racial and ethnic differences in parents' assessments of pediatric care in Medicaid managed care.

OBJECTIVE: This study examines whether parents' reports and ratings of pediatric health care vary by race/ethnicity and language in Medicaid managed care. DATA SOURCES: The data analyzed are from the National Consumer Assessment of Health Plans (CAHPS) Benchmarking Database 1.0 and consist of 9,540 children enrolled in Medicaid managed care plans in Arkansas, Kansas, Minnesota, Oklahoma, Vermont, and Washington state from 1997 to 1998. DATA COLLECTION: The data were collected by telephone and mail, and surveys were administered in Spanish and English. The mean response rate for all plans was 42.1 percent. STUDY DESIGN: Data were analyzed using multiple regression models. The dependent variables are CAHPS 1.0 ratings (personal doctor, specialist, health care, health plan) and reports of care (getting needed care, timeliness of care, provider communication, staff helpfulness, plan service). The independent variables are race/ethnicity (white, African American, American Indian, Asian, and Hispanic), Hispanic language (English or Spanish), and Asian language (English or other), controlling for gender, age, education, and health status. PRINCIPAL FINDINGS: Racial/ethnic minorities had worse reports of care than whites. Among Hispanics and Asians language barriers had a larger negative effect on reports of care than race/ethnicity. For example, while Asian non-English-speakers had lower scores than whites for staff helpfulness (beta = -20.10), timeliness of care (beta = -18.65), provider communication (beta = -17.19), plan service (beta = -10.95), and getting needed care (beta = -8.11), Asian English speakers did not differ significantly from whites on any of the reports of care. However, lower reports of care for racial/ethnic groups did not translate necessarily into lower ratings of care. CONCLUSIONS: Health plans need to pay increased attention to racial/ethnic differences in assessments of care. This study's finding that language barriers are largely responsible for racial/ethnic disparities in care suggests that linguistically appropriate health care services are needed to address these gaps.

Differences in CAHPS adult survey reports and ratings by race and ethnicity: an analysis of the National CAHPS benchmarking data 1.0.

OBJECTIVE: To examine racial/ethnic group differences in adults' reports and ratings of care using data from the National Consumer Assessment of Health Plans (CAHPS) survey Benchmarking Database (NCBD) 1.0. DATA SOURCE: Adult data from the NCBD 1.0 is comprised of CAHPS 1.0 survey data from 54 commercial and 31 Medicaid health plans from across the United States. A total of 28,354 adult respondents (age > or = 18 years) were included in this study. Respondents were categorized as belonging to one of the following racial/ethnic groups: Hispanic (n = 1,657), white (n = 20,414), black or African American (n = 2,942), Asian and Pacific Islander (n = 976), and American Indian or Alaskan native (n = 588). STUDY DESIGN: Four single-item global ratings (personal doctor, specialty care, overall rating of health plan, and overall rating of health care) and five multiple-item report composites (access to needed care, provider communication, office staff helpfulness, promptness of care, and health plan customer service) from CAHPS 1.0 were examined. Statistical Analyses. Multiple regression models were estimated to assess differences in global ratings and report composites between whites and members of other racial/ethnic groups, controlling for age, gender, perceived health status, educational attainment, and insurance type. PRINCIPAL FINDINGS: Members of racial/ethnic minority groups, with the exception of Asians/Pacific Islanders, reported experiences with health care similar to those of whites. However, global ratings of care by Asians/Pacific Islanders are similar to those of whites. CONCLUSIONS: Improvements in quality of care for Asians/Pacific Islanders are needed. Comparisons of care in racially and ethnically diverse populations based on global ratings of care should be interpreted cautiously.

Confirmatory factor analysis of the Consumer Assessment of Health Plans Study (CAHPS) 1.0 Core Survey.

The National Consumer Assessment of Health Plans Study (CAHPS) Benchmarking Database was used to assess the factor structure and invariance of the CAHPS 1.0 Core Survey. Separate analyses were conducted with Latino and non-Latino Caucasian consumers drawn from commercial and Medicaid sectors (N = 15,092). Results demonstrated that the 23 CAHPS 1.0 report items measure consumer reports of experiences with 5 aspects of health plan performance: Access to Care, Timeliness of Care, Provider Communication, Health Plan Consumer Service, and Office Staff Helpfulness. Four items assessed global ratings of care. Analyses revealed an identical pattern of fixed and free factor loadings across all samples. Magnitude of factor loadings and correlations among factors was essentially equivalent within a common health service sector. A higher order factor analysis revealed that rating and reports of care showed marked convergence.

Crossing the border for health care.

A survey was administered to adults attending a health fair in south Los Angeles County, approximately 140 miles from the U.S.-Mexico border. The survey revealed that 14 percent of respondents had crossed the border to seek medical care during the past year. Nearly 80 percent of respondents crossing the border for medical care were uninsured, while 70 percent reported the low cost of medical care obtained across the border as being the most common reason for seeking care there. Twenty-eight percent of respondents reported purchasing medication in Mexico, with antibiotics and pain medication being reported in highest frequency. Ninety percent of these respondents were uninsured. This study shows that the high cost of health care and lack of insurance compels the poor and uninsured to seek low-cost health care and medication in Mexico to meet their most urgent health care needs, despite the burden of cost and travel.

Ethnic and racial differences in long-term survival from hospitalization for HIV infection.

This prospective cohort study compares 200 hospitalized, HIV-infected patients (Hispanic, African American, and white) from May 1992 to October 1998 to assess mortality (versus survival) over 75 months of follow-up. The relative risk of six-year mortality for each ethnic group is compared using Cox proportional hazards models after controlling for sociodemographic and clinical characteristics, access to general medical care, and HIV-specific treatment. The median survival of Hispanics (15.5 months) was significantly (p < 0.05) shorter than that of whites (23.8); survival for African Americans (35.1) did not differ from whites. In multivariate analysis, the adjusted relative risk of six-year mortality for Hispanics compared with whites was 2.14 (95 percent confidence interval = 1.26-3.66). The poor outcomes of Hispanics was not explained by access to general care or by HIV-specific treatment.

Risk of cardiovascular disease in first and second generation Mexican-Americans.

This study examines the cardiovascular disease (CVD) risk profiles of first generation (FG) and second generation (SG) Mexican-Americans (MA) in two large national studies--the Hispanic Health and Nutrition Examination Study (HHANES) (1982-1984) and the National Health and Examination Study (NHANES) (1999-2004). The main outcome measures were five individual risk indicators of CVD (total cholesterol, HDL cholesterol, hypertension, diabetes, and smoking) and a composite measure (the Framingham Risk Score [FRS]). The analyses included cross-survey (pseudocohort) and within-survey (cross-sectional) comparisons. In multivariate analyses, SG men had higher rates of hypertension and lower rates of smoking than FG men; and SG women had lower total cholesterol levels, higher rates of hypertension, and lower rates of smoking than FG women. There was no generational difference in the FRS in men or women. The cross-survey comparisons detected generational differences in CVD risk factors not detected in within-survey comparisons, particularly among MA women. Future studies of generational differences in risk should consider using pseudocohort comparisons when possible.

Utilization of health care services among adults attending a health fair in South Los Angeles County.

A bilingual survey was developed to collect information regarding socio-demographics, access to medical and dental care, health insurance coverage, perceived health status, and use of folk medicine providers from 70 adults presenting to a health fair in South Los Angeles County. Ninety-seven percent of respondents were foreign-born. Seventy-nine percent reported having no health insurance during the year prior to survey. Of the uninsured, 61 percent lacked a doctor visit and 76 percent lacked a dental visit during the previous year. The high cost of care was the most frequently cited barrier to seeking medical (58 percent) and dental (67 percent) care even when respondents felt it was necessary. Respondents who felt they needed medical attention but did not seek it had a lower perceived health status (7.0 +/- 2.2) than those who did (8.0 +/-2.0). Among respondents perceiving themselves in poor health, only 17 percent were insured. Relatively few respondents (7.2 percent) reported seeing a folk healer during the past year. Our results support the argument that the medically indigent in some localities face serious financial, as well as less salient, barriers to access. These local conditions reflect inadequate enforcement by local governments in correcting the difficult problems indigent populations face in accessing medical and dental care.

The RAND-36 measure of health-related quality of life.

The RAND-36 is perhaps the most widely used health-related quality of life (HRQoL) survey instrument in the world today. It is comprised of 36 items that assess eight health concepts: physical functioning, role limitations caused by physical health problems, role limitations caused by emotional problems, social functioning, emotional well-being, energy/fatigue, pain, and general health perceptions. Physical and mental health summary scores are also derived from the eight RAND-36 scales. This paper provides example applications of the RAND-36 cross-sectionally and longitudinally, provides information on what a clinically important difference is for the RAND-36 scales, and provides guidance for summarizing the RAND-36 in a single number. The paper also discusses the availability of the RAND-36 in multiple languages and summarizes changes that are incorporated in the latest version of the survey.

Evaluating the equivalence of health care ratings by whites and Hispanics.

PURPOSE: This study was designed to assess the equivalence of a health care ratings scale administered to non-Hispanic white and Hispanic survey respondents. METHODS: We sent 18,840 questionnaires to a random sample of patients receiving medical care from a physician group association concentrated in the western United States; 7,093 were returned (59% adjusted response rate). Approximately 90% of survey respondents self-identified as white/Caucasian (n = 5,508) or Hispanic/Latino (n = 713). Interpersonal and technical aspects of medical care were assessed with 9 items, all administered with a 7-point response format: the best, excellent, very good, good, fair, poor, and very poor, with a "not applicable" option. Item response theory procedures were used to test for differential item functioning between white and Hispanic respondents. RESULTS: Hispanics were found to be significantly more dissatisfied with care than whites (effect size=0.27; P <0.05). Of the 9 test items, 2 had statistically significant differential item functioning (P <0.05): reassurance and support offered by your doctors and staff and quality of examinations received. However, summative scale scores and test characteristic curves for whites and Hispanics were similar whether or not these items were included in the scale. CONCLUSIONS: Despite some differences in item functioning, valid satisfaction-with-care comparisons between whites and Hispanics are possible. Thus, disparities in satisfaction ratings between whites and Hispanics should not be ascribed to measurement bias but should be viewed as arising from actual differences in experiences with care.

Item response theory and health outcomes measurement in the 21st century.

Item response theory (IRT) has a number of potential advantages over classical test theory in assessing self-reported health outcomes. IRT models yield invariant item and latent trait estimates (within a linear transformation), standard errors conditional on trait level, and trait estimates anchored to item content. IRT also facilitates evaluation of differential item functioning, inclusion of items with different response formats in the same scale, and assessment of person fit and is ideally suited for implementing computer adaptive testing. Finally, IRT methods can be helpful in developing better health outcome measures and in assessing change over time. These issues are reviewed, along with a discussion of some of the methodological and practical challenges in applying IRT methods.

Are Latinos less satisfied with communication by health care providers?

OBJECTIVE: To examine associations of patient ratings of communication by health care providers with patient language (English vs Spanish) and ethnicity (Latino vs white). METHODS: A random sample of patients receiving medical care from a physician group association concentrated on the West Coast was studied. A total of 7,093 English and Spanish language questionnaires were returned for an overall response rate of 59%. Five questions asking patients to rate communication by their health care providers were examined in this study. All five questions were administered with a 7-point response scale. MAIN RESULTS: We estimated the associations of satisfaction ratings with language (English vs Spanish) and ethnicity (white vs Latino) using ordinal logistic models, controlling for age and gender. Latinos responding in Spanish (Latino/Spanish) were significantly more dissatisfied compared with Latinos responding in English (Latino/English) and non-Latino whites responding in English (white) when asked about: (1) the medical staff listened to what they say (29% vs 17% vs 13% rated this "very poor," "poor," or "fair"; p <.01); (2) answers to their questions (27% vs 16% vs 12%; p <.01); (3) explanations about prescribed medications (22% vs 19% vs 14%; p <.01); (4) explanations about medical procedures and test results (36% vs 21% vs 17%; p <.01); and (5) reassurance and support from their doctors and the office staff (37% vs 23% vs 18%; p <.01). CONCLUSION: This study documents that Latino/Spanish respondents are significantly more dissatisfied with provider communication than Latino/English and white respondents. These results suggest Spanish-speaking Latinos may be at increased risk of lower quality of care and poor health outcomes. Efforts to improve the quality of communication with Spanish-speaking Latino patients in outpatient health care settings are needed.

Nutritional status, gastrointestinal dysfunction, and survival in patients with AIDS.

The clinical course of 71 patients with acquired immune deficiency syndrome (AIDS) was evaluated to determine relationships among nutritional status, gastrointestinal symptoms and survival. At baseline, weight loss was present in 98%, hypoalbuminemia (less than 3.5 g/dl) was present in 83%, and gastrointestinal symptoms included pharyngitis (54%), diarrhea (42%), nausea (23%), dysphagia (21%), and anorexia (18%). Both the magnitude of body weight loss and the serum albumin level were strongly associated with life-table analysis of survival. For weight loss, median survival of 520 vs. 48 days occurred in patients with less than 10% versus greater than 20% baseline weight loss, respectively (p less than 0.01). The substantial influence of serum albumin on survival is outlined below. (table; see text) In almost all cases, serial evaluation demonstrated progressive linear decrease in body weight and albumin. In patients with normal baseline albumin, the rate of 0.7 mg/dl albumin decrease per day was less than half that in patients with baseline hypoalbuminemia. A projected "time to develop an albumin level less than 2.5 g/dl" was calculated for patient groups based on initial albumin level and the rate of albumin decrease. The calculated interval was similar to the actual median survival time observed in these groups. We conclude that 1) nutritional status may represent a major determinant of survival in AIDS and 2) the rate of albumin decrease may define a function limiting survival of individual patients with AIDS.

Health information on the Internet: accessibility, quality, and readability in English and Spanish.

CONTEXT: Despite the substantial amount of health-related information available on the Internet, little is known about the accessibility, quality, and reading grade level of that health information. OBJECTIVE: To evaluate health information on breast cancer, depression, obesity, and childhood asthma available through English- and Spanish-language search engines and Web sites. DESIGN AND SETTING: Three unique studies were performed from July 2000 through December 2000. Accessibility of 14 search engines was assessed using a structured search experiment. Quality of 25 health Web sites and content provided by 1 search engine was evaluated by 34 physicians using structured implicit review (interrater reliability >0.90). The reading grade level of text selected for structured implicit review was established using the Fry Readability Graph method. MAIN OUTCOME MEASURES: For the accessibility study, proportion of links leading to relevant content; for quality, coverage and accuracy of key clinical elements; and grade level reading formulas. RESULTS: Less than one quarter of the search engine's first pages of links led to relevant content (20% of English and 12% of Spanish). On average, 45% of the clinical elements on English- and 22% on Spanish-language Web sites were more than minimally covered and completely accurate and 24% of the clinical elements on English- and 53% on Spanish-language Web sites were not covered at all. All English and 86% of Spanish Web sites required high school level or greater reading ability. CONCLUSION: Accessing health information using search engines and simple search terms is not efficient. Coverage of key information on English- and Spanish-language Web sites is poor and inconsistent, although the accuracy of the information provided is generally good. High reading levels are required to comprehend Web-based health information.