Adapting summary scores for the PROMIS-29 v2.0 for use among older adults with multiple chronic conditions.

PURPOSE: The patient-reported outcomes measurement information system 29-item profile (PROMIS-29 v2.0) is a widely used health-related quality of life (HRQoL) measure. Summary scores for physical and mental HRQoL have recently been developed for the PROMIS-29 using a general population. Our purpose was to adapt these summary scores to a population of older adults with multiple chronic conditions. METHODS: We collected the PROMIS-29 v2.0 for 1359 primary care patients age 65+ with at least 2 of 13 chronic conditions. PROMIS-29 has 7 domains, plus a single-item pain intensity scale. We used exploratory factor analysis (EFA), followed by confirmatory factor analysis (CFA), to examine the number of factors that best captured these eight scores. We used previous results from a recent study by Hays et al. (Qual Life Res 27:1885-1891, 2018) to standardize scoring coefficients, normed to the general population. RESULTS: The mean age was 80.7, and 67% of participants were age 80 or older. Our results indicated a 2-factor solution, with these factors representing physical and mental HRQoL, respectively. We call these factors the physical health score (PHS) and the mental health score (MHS). We normed these summary scores to the general US population. The mean MHS for our population of was 50.1, similar to the US population, while the mean PHS was 42.2, almost a full standard deviation below the US population. CONCLUSIONS: We describe the adaptation of physical and mental health summary scores of the PROMIS-29 for use with a population of older adults with multiple chronic conditions.

Patient-Reported Outcome-Based Performance Measures for Older Adults with Multiple Chronic Conditions.

As measures of health care quality have become more sophisticated, the goals of patient care have expanded into helping patients optimize their functional status and well-being. Patient-reported outcome (PRO) based performance measures (PMs) can measure how well these aspects of care are being delivered and compare the performance of health care systems and different provider groups. Most PMs focus on technical quality of care or such outcomes as survival. For older adults, especially those over age 80 with multiple chronic conditions (MCC), it might be equally important or even more important to have a good quality of life. Therefore, policymakers and researchers have been particularly interested in designing PMs that reflect these patients' goals. To date, no PRO-based PMs have been formally developed or validated specifically for use in older adults with MCC. RAND analysts tested PMs that were based on two prominent instruments for assessing health-related quality of life: the Veterans RAND 36 Item Health Survey (VR-36) and the Patient-Reported Outcomes Measurement Information System 29-item (PROMIS-29) profile instrument. The PROMIS-29 is in widespread use but has undergone limited validation in a geriatric population with MCC. The study had two main aims: first, to validate the PROMIS-29 in this population, and second, to develop a better understanding of the practical use of PRO-based PMs in a geriatric population. To this end, the analysts assessed PM performance based on serial administration of the VR-36 or PROMIS-29, specifically in the MCC population studied.

Evaluating the PROMIS-29 v2.0 for use among older adults with multiple chronic conditions.

PURPOSE: The Patient-Reported Outcomes Measurement Information System 29-item profile (PROMIS-29 v2.0), which measures health-related quality of life (HRQoL), has had limited evaluation among older adults (age 65+) with multiple chronic conditions. Our purpose was to establish convergent validity for PROMIS-29 in this population. METHODS: We collected the PROMIS-29 v2.0 and the Veterans RAND 36 (VR-36) for 1359 primary care patients aged 65 + with at least 2 of 13 chronic conditions, oversampling those aged 80+. We conducted multiple analyses to examine score differences across subgroups, differential item functioning (DIF), and comparisons of PROMIS-29 v2.0 and VR-36 scores. RESULTS: The mean age was 80.7, and all patients had at least 2 of 13 chronic conditions. Older age, female sex, Hispanic ethnicity, and more chronic conditions were associated with worse physical health scores (PHS) and mental health scores (MHS) on the PROMIS-29 v2.0-findings which are in the expected direction. None of the 700 pairs of items met criteria for DIF. PHS and MHS were highly intercorrelated (r = 0.74, p < 0.001 for this and all other findings). PHS was more highly correlated with the VR-36 Physical Component Score (PCS) than the Mental Component Score (MCS) (r = 0.85 and 0.32, respectively), while MHS was highly correlated with both (r = 0.70 and 0.64, respectively). CONCLUSIONS: PROMIS-29 v2.0 demonstrates expected bivariate relationships with key person-level characteristics and does not show DIF. PROMIS-29 v2.0 scores are highly correlated with VR-36 scores. These results provide support for the validity of PROMIS-29 v2.0 as a measure of HRQoL among older adults with multiple chronic conditions.

Training the Next Generation of Latino Health Researchers: A Multilevel, Transdisciplinary, Community-Engaged Approach.

Reducing health disparities is a national public health priority. Latinos represent the largest racial/ethnic minority group in the United States and suffer disproportionately from poor health outcomes, including cardiovascular disease risk. Academic training programs are an opportunity for reducing health disparities, in part by increasing the diversity of the public health workforce and by incorporating training designed to develop a skill set to address health disparities. This article describes the Training and Career Development Program at the UCLA Center for Population Health and Health Disparities: a multilevel, transdisciplinary training program that uses a community-engaged approach to reduce cardiovascular disease risk in two urban Mexican American communities. Results suggest that this program is effective in enhancing the skill sets of traditionally underrepresented students to become health disparities researchers and practitioners.

Substantial improvements not seen in health behaviors following corner store conversions in two Latino food swamps.

BACKGROUND: The effectiveness of food retail interventions is largely undetermined, yet substantial investments have been made to improve access to healthy foods in food deserts and swamps via grocery and corner store interventions. This study evaluated the effects of corner store conversions in East Los Angeles and Boyle Heights, California on perceived accessibility of healthy foods, perceptions of corner stores, store patronage, food purchasing, and eating behaviors. METHODS: Household data (n = 1686) were collected at baseline and 12- to 24-months post-intervention among residents surrounding eight stores, three of which implemented a multi-faceted intervention and five of which were comparisons. Bivariate analyses and logistic and linear regressions were employed to assess differences in time, treatment, and the interaction between time and treatment to determine the effectiveness of this intervention. RESULTS: Improvements were found in perceived healthy food accessibility and perceptions of corner stores. No changes were found, however, in store patronage, purchasing, or consumption of fruits and vegetables. CONCLUSIONS: Results suggest limited effectiveness of food retail interventions on improving health behaviors. Future research should focus on other strategies to reduce community-level obesity.

Access to and Use of Health Care Services Among Latinos in East Los Angeles and Boyle Heights.

This study examined differences in access, utilization, and barriers to health care by nativity, language spoken at home, and insurance status in East Los Angeles and Boyle Heights, California. Data from household interviews of neighborhood residents conducted as part of a corner store intervention project were used. Binary and multinomial logistic regression models were fitted. Results showed that uninsured and foreign-born individuals were differentially affected by lack of access to and utilization of health care. While the Affordable Care Act may ameliorate some disparities, the impact will be limited because of the exclusion of key groups, like the undocumented, from benefits.

A Mixed Methods Comparison of Urban and Rural Retail Corner Stores.

Efforts to transform corner stores to better meet community dietary needs have mostly occurred in urban areas but are also needed in rural areas. Given important contextual differences between urban and rural areas, it is important to increase our understanding of the elements that might translate successfully to similar interventions involving stores in more rural areas. Thus, an in-depth examination and comparison of corner stores in each setting is needed. A mixed methods approach, including windshield tours, spatial visualization with analysis of frequency distribution, and spatial regression techniques were used to compare a rural North Carolina and large urban (Los Angeles) food environment. Important similarities and differences were seen between the two settings in regards to food environment context, spatial distribution of stores, food products available, and the factors predicting corner store density. Urban stores were more likely to have fresh fruits (Pearson chi2 = 27.0423; p < 0.001) and vegetables (Pearson chi2 = 27.0423; p < 0.001). In the urban setting, corner stores in high income areas were more likely to have fresh fruit (Pearson chi2 = 6.00; p = 0.014), while in the rural setting, there was no difference between high and low income area in terms of fresh fruit availability. For the urban area, total population, no vehicle and Hispanic population were significantly positively associated (p < 0.05), and median household income (p < 0.001) and Percent Minority (p < 0.05) were significantly negatively associated with corner store count. For the rural area, total population (p < 0.05) and supermarket count were positively associated (p < 0.001), and median household income negatively associated (P < 0.001), with corner store count. Translational efforts should be informed by these findings, which might influence the success of future interventions and policies in both rural and urban contexts.

Proyecto MercadoFRESCO: a multi-level, community-engaged corner store intervention in East Los Angeles and Boyle Heights.

Urban food swamps are typically situated in low-income, minority communities and contribute to overweight and obesity. Changing the food landscape in low income and underserved communities is one strategy to combat the negative health consequences associated with the lack of access to healthy food resources and an abundance of unhealthy food venues. In this paper, we describe Proyecto MercadoFRESCO (Fresh Market Project), a corner store intervention project in East Los Angeles and Boyle Heights in California that used a multi-level approach with a broad range of community, business, and academic partners. These are two neighboring, predominantly Latino communities that have high rates of overweight and obesity. Located in these two communities are approximately 150 corner stores. The project used a community-engaged approach to select, recruit, and convert four corner stores, so that they could become healthy community assets in order to improve residents' access to and awareness of fresh and affordable fruits and vegetables in their immediate neighborhoods. We describe the study framework for the multi-level intervention, which includes having multiple stakeholders, expertise in corner store operations, community and youth engagement strategies, and social marketing campaigns. We also describe the evaluation and survey methodology to determine community and patron impact of the intervention. This paper provides a framework useful to a variety of public health stakeholders for implementing a community-engaged corner store conversion, particularly in an urban food swamp.

Patients' and caregivers' experiences of the impact of Parkinson's disease on health status.

BACKGROUND: Parkinson's disease (PD) is a neurodegenerative disease that significantly affects patients' quality of life. The myriad complexities of the disease, including its nonmotor manifestations, are beginning to be more fully appreciated, particularly in regard to the emotional and social effects of PD. Considering that both motor and nonmotor manifestations of PD significantly influence the health outcomes and conditions of patients, and their health-related quality of life (HRQOL), we collected qualitative data from patients with PD, as well as caregivers of persons with PD having cognitive impairment, to assess their perceptions of the impact of PD on HRQOL. METHODS: We conducted eight focus groups and five one-on-one interviews in English and in Spanish between March 2007 and February 2008. Three of the focus groups were conducted with a total of 15 caregivers; the remaining focus groups and all interviews were conducted with 48 PD patients. Study participants were asked about the challenges that PD patients may experience, particularly pertaining to physical functioning, the impact of PD on their emotional status, and social functioning. RESULTS: Based on analysis of the transcripts, we identified seven overarching domains or themes that reflect patients' perspectives on living with PD, ie, physical functioning, social and role functioning, emotional impact, fears and uncertainty about the future, stigma and other feelings about PD, coping mechanisms, and benefits of having PD. CONCLUSION: We underscore the salient aspects regarding the physical effects of PD along with its nonphysical ramifications, offering perspectives into the experience of PD and suggestions on how PD patients and their caregivers may cope with the disease.

Developing a Spanish-language consumer report for CAHPS health plan surveys.

BACKGROUND: A Spanish-language consumer report on health plan quality was developed for the Consumer Assessments of Healthcare Providers and Systems (CAHPS) project. METHODS: Multiple translations, a committee review, and a readability assessment were performed to produce a draft Spanish report. The report was revised on the basis of a series of cognitive interviews with 24 Latinos. RESULTS: The median age of participants was 41 years, and the median number of years in the United States was 9; 67% were female, and 63% had less than a high school education. In general, participants understood the report and said they would use it to choose a health plan. Less-educated respondents had difficulty understanding the segmented bar graphs that showed the proportion of health plan members' responses. A summary chart comparing all health plans on all dimensions was easier to comprehend when differences were represented by word icons rather than by stars. DISCUSSION: Concepts and terms about health care quality translated well from English to Spanish. Simplifying graphical information involves losing some detail but makes information more usable. Summary charts facilitate comparisons across plans, but differences relative to a mean are difficult for both Spanish- and English-speaking consumers to understand.

Do patient consent procedures affect participation rates in health services research?

BACKGROUND: Few studies have examined the effects of Institutional Review Board (IRB) requirements to contact potential research participants. OBJECTIVE: To examine the association between requirements to contact potential research subjects and participation rates in a multisite health services research study. RESEARCH DESIGN, SUBJECTS: Prospective observational study of survey participation by 2673 individuals with diabetes and 1974 individuals with congestive heart failure treated at 15 clinical sites in the United States that had implemented a quality improvement intervention. MAIN OUTCOME MEASURES: Telephone survey response rates. RESULTS: Of 15 IRBs, seven required sites to obtain authorization from participants to release contact information to the study team. Five required oral and two required written advance permission. The response rate was 58% (913/1571) at sites where no advance permission was required, 39% (989/2530) from sites that required oral advance permission and 27% (145/546, P <0.001) at sites requiring written advance permission. Although 85% of eligible participants contacted directly by the study team consented to complete the survey, only 43% of individuals at sites requiring written advance permission allowed the release of contact information to the study team. CONCLUSIONS: Many potential participants did not grant advance permission to be contacted by the study team. Requiring advance permission reduced participation rates, especially at sites requiring written authorization.