Development and calibration data for the Illness Burden item bank: a new computer adaptive test for persons with type 2 diabetes mellitus.

PURPOSE: The purpose of this study was to develop a new measure, the Re-Engineered Discharge for Diabetes Computer Adaptive Test (REDD-CAT) Illness Burden item bank, to evaluate the impact that a chronic condition has on independent living, the ability to work (including working at home), social activities, and relationships. METHODS: Semi-structured interviews were used to inform the development of an item pool (47 items) that captured patients' beliefs about how a diagnosis of type 2 diabetes interferes with different aspects of their lives. The Illness Burden item bank was developed and tested in 225 people with type 2 diabetes mellitus. RESULTS: No items had sparse response option cells or problems with monotonicity; two items were deleted due to low item-rest correlations. Factor analyses supported the retention of 29 items. With those 29 remaining items, a constrained (common slope) graded response model fit assessment indicated that two items had misfit; they were excluded. No items displayed differential item functioning by age, sex, education, or socio-economic status. The final item bank is comprised of 27 items. Preliminary data supported the reliability (internal consistency and test-retest reliability) and validity (convergent, discriminant, and known-groups) of the new bank. CONCLUSION: The Illness Burden item bank can be administered as a computer adaptive test or a 6-item short form. This new measure captures patients' perceptions of the impact that having type 2 diabetes has on their daily lives; it can be used in conjunction with the REDD-CAT measurement system to evaluate important social determinants of health in persons with type 2 diabetes mellitus.

Initial Evidence for Reliable and Valid Use of Scores on the 8-Item Econ-QOL Short Form to Measure Economic Quality of Life in Caregivers of Persons With Traumatic Brain Injury.

OBJECTIVE: To provide reliability and validity data to support the clinical utility of Economic Quality of Life Measure (Econ-QOL) scores in caregivers of civilians and service members/veterans with traumatic brain injury (TBI). DESIGN: Cross-sectional survey study. SETTING: Three academic medical centers and a Veterans Affairs treatment facility. PARTICIPANTS: 376 caregivers of civilians (n=213) and service members/veterans (n=163) with TBI (N=376). INTERVENTIONS: N/A. MAIN OUTCOME MEASURES: Econ-QOL and several patient-reported outcome measures (Traumatic Brain Injury Caregiver Quality of Life Caregiver-Specific Anxiety and Caregiver Strain, Patient-Reported Outcomes Measurement Information System sleep-related impairment, Neurological Quality of Life Measurement System positive affect and well-being) and measures of financial status (self-reported income). RESULTS: Internal consistency reliability of the Econ-QOL Short Form scores were excellent (all Cronbach's alphas ≥.92). There were no floor or ceiling effects for scores. There was evidence of convergent and discriminant validity, with the Econ-QOL scores having the strongest relationships with self-reported income (convergent validity evidence) and weak relationships with the other measures (discriminant validity evidence). Individuals with scores that were "below or possibly below" the poverty line (according to 2016 federal government poverty level thresholds) reported worse economic quality of life relative to those individuals who were definitely above the poverty line, supporting known-groups validity. CONCLUSIONS: This article establishes the clinical utility of scores on the Econ-QOL Short Form in caregivers of persons with TBI and provides evidence that it is valid and appropriate to use such scores not only in a variety of different disability populations (eg, spinal cord injury, stroke) but also in caregivers.

New complementary perspectives for inpatient physical function assessment: matched clinician-report and patient-report short form measures from the PROMIS adult physical function item bank.

PURPOSE: To develop two item content-matched, precise, score-level targeted inpatient physical function (PF) short form (SF) measures: one clinician-reported, one patient-reported. Items were derived from PROMIS PF bank content; scores are reported on the PROMIS PF T-score metric. METHODS: The PROMIS PF item bank was reviewed for content measuring lower-level PF status (T-scores 10-50) with high item set score-level reliability (≥ 0.90). Selected patient-reported (PR) items were also edited to function as clinician-reported (CR) items. Items were reviewed by clinicians and field tested; responses were assessed for meeting PROMIS measure development standards. New CR and PR items were calibrated using patient responses to the original PROMIS PF items as anchoring data. SFs were constructed, based on content and precision. RESULTS: Nine PROMIS PF items were candidates for CR and PR inpatient PF assessment; three new items were written to extend content coverage. An inpatient sample (N = 515; 55.1% female; mean age = 66.2 years) completed 12 PR items and was assessed by physical therapists (using 12 CR items). Analyses indicated item sets met expected measure development standards. Twelve new CR and three new PR items were linked to the PROMIS PF metric (raw score r = 0.73 and 0.90, respectively). A 5-item CR SF measure was constructed; score-level reliabilities were ≥ 0.90 for T-scores 13-45. A 5-item PR SF measure was assembled, mirroring CR SF content. CONCLUSIONS: Two item content-matched SFs have been developed for clinician and patient reporting and are an effective, efficient means of assessing inpatient PF and offer complementary perspectives.

Mobile Phones May Not Bridge the Digital Divide: A Look at Mobile Phone Literacy in an Underserved Patient Population.

PURPOSE: Mobile health (mHealth) has promise to improve patient access to disease prevention and health promotion services; however, historically underserved populations may have poor access to mobile phones or may not be aware of or comfortable using phone features. Our objectives were to assess mobile phone ownership and mobile phone literacy among low-income, predominately racial and ethnic minority patients. MATERIALS AND METHODS: We conducted a cross-sectional survey of a convenience sample of primary care patients in a publicly-funded clinic in Houston, TX. RESULTS: Of 285 participants, 240 owned a mobile phone and 129 owned a smartphone. The most common uses of phones were talk (89%) and text messaging (65%). Only 28% of smartphone owners had health apps. Younger age was significantly associated with smartphone ownership and use of smartphones for Internet browsing, social media, and apps. CONCLUSION: Our findings from a safety-net patient population represent trends in mobile phone ownership and literacy. Despite the single-site location of our study, the findings could be helpful to health promotion practitioners working with similar underserved populations. mHealth interventions should employ phone features that are accessible and familiar to the target audience to avoid denying intervention benefits to those with low mobile phone literacy and therefore widen health disparities.

The Association of Unmet Needs With Subsequent Retention in Care and HIV Suppression Among Hospitalized Patients With HIV Who Are Out of Care.

BACKGROUND: Unmet needs among hospitalized patients with HIV may prevent engagement in HIV care leading to worse clinical outcomes. Our aim was to examine the role of unmet subsistence needs (eg, housing, transportation, and food) and medical needs (eg, mental health and substance abuse treatment) as barriers for retention in HIV care and viral load (VL) suppression. METHODS: We used data from the Mentor Approach for Promoting Patients' Self-Care intervention study, the enrolled hospitalized HIV patients at a large publicly funded hospital between 2010 and 2013, who were out-of-care. We examined the effect of unmet needs on retention in HIV care (attended HIV appointments within 0-30 days and 30-180 days) and VL suppression, 6 months after discharge. RESULTS: Four hundred seventeen participants were enrolled, 78% reported having ≥1 unmet need at baseline, most commonly dental care (55%), financial (43%), or housing needs (34%). Participants with unmet needs at baseline, compared to those with no needs, were more likely to be African American, have an existing HIV diagnosis and be insured. An unmet need for transportation was associated with lower odds of retention in care [odds ratio (OR): 0.5; 95% confidence interval (CI): 0.34 to 0.94, P = 0.03], even after adjusting for other factors. Compared to participants with no need, those who reported ≥3 unmet subsistence needs were less likely to demonstrate VL improvement (OR: 0.51; 95% CI: 0.28 to 0.92; P = 0.03) and to be retained in care (OR: 0.52; 95% CI: 0.28 to 0.95; P = 0.03). CONCLUSION: Broader access to programs that can assist in meeting subsistence needs among hospitalized patients could have significant individual and public health benefits.

The Role of Text Messages in Patient-Physician Communication about the Influenza Vaccine.

BACKGROUND: Racial and ethnic minorities face disparities in receiving the influenza vaccination. A text message intervention could deliver personalized and timely messages to counsel patients on asking their physician for the vaccination. AIMS: We assessed whether patients would be receptive to influenza vaccination text messages. METHODS: Participants were recruited from a sample of low-income, racial and ethnic minority primary care patients. Participants completed a self-administered survey. Descriptive statistics were used to analyze the data. RESULTS: There were 274 patients who participated and answered the questions of interest, of whom 70% were racial and ethnic minorities and 85% owned a cell phone. Thirty-six percent reported they had never received an influenza vaccination recommendation from their physician. However, 84% would be comfortable asking their physician for the influenza vaccination. Of cell phone-owning participants who would be comfortable asking their physician about the influenza vaccination, 80% would also be comfortable receiving a text message reminder. CONCLUSION: Text messages may be an acceptable channel to prompt patients to discuss the annual influenza vaccination with their physicians. Text messaging is a feasible tool to engage patients in their health and improve annual influenza vaccination rates among low-income, racial and ethnic minority patients.

Evaluation of the Validity and Response Burden of Patient Self-Report Measures of the Pain Assessment Screening Tool and Outcomes Registry (PASTOR).

BACKGROUND: In 2009, the Army Pain Management Task Force was chartered. On the basis of their findings, the Department of Defense recommended a comprehensive pain management strategy that included development of a standardized pain assessment system that would collect patient-reported outcomes data to inform the patient-provider clinical encounter. The result was the Pain Assessment Screening Tool and Outcomes Registry (PASTOR). The purpose of this study was to assess the validity and response burden of the patient-reported outcome measures in PASTOR. METHODS: Data for analyses were collected from 681 individuals who completed PASTOR at baseline and follow-up as part of their routine clinical care. The survey tool included self-report measures of pain severity and pain interference (measured using the National Institutes of Health Patient-Reported Outcome Measurement Information System [PROMIS] and the Defense and Veterans Pain Rating scale). PROMIS measures of pain correlates also were administered. Validation analyses included estimation of score associations among measures, comparison of scores of known groups, responsiveness, ceiling and floor effects, and response burden. RESULTS: Results of psychometric testing provided substantial evidence for the validity of PASTOR self-report measures in this population. Expected associations among scores largely supported the concurrent validity of the measures. Scores effectively distinguished among respondents on the basis of their self-reported impressions of general health. PROMIS measures were administered using computer adaptive testing and each, on average, required less than 1 minute to administer. Statistical and graphical analyses demonstrated the responsiveness of PASTOR measures over time.

Establishing a common metric for self-reported pain: linking BPI Pain Interference and SF-36 Bodily Pain Subscale scores to the PROMIS Pain Interference metric.

PURPOSE: The study purposes were to mathematically link scores of the Brief Pain Inventory Pain Interference Subscale and the Short Form-36 Bodily Pain Subscale (legacy pain interference measures) to the NIH Patient-Reported Outcome Measurement Information System (PROMIS(®)) Pain Interference (PROMIS-PI) metric and evaluate results. METHODS: Linking was accomplished using both equipercentile and item response theory (IRT) methods. Item parameters for legacy items were estimated on the PROMIS-PI metric to allow for pattern scoring. Crosswalk tables also were developed that associated raw scores (summed or average) on legacy measures to PROMIS-PI scores. For each linking strategy, participants' actual PROMIS-PI scores were compared to those predicted based on their legacy scores. To assess the impact of different sample sizes, we conducted random resampling with replacement across 10,000 replications with sample sizes of n = 25, 50, and 75. RESULTS: Analyses supported the assumption that all three scales were measuring similar constructs. IRT methods produced marginally better results than equipercentile linking. Accuracy of the links was substantially affected by sample size. CONCLUSIONS: The linking tools (crosswalks and item parameter estimates) developed in this study are robust methods for estimating the PROMIS-PI scores of samples based on legacy measures. We recommend using pattern scoring for users who have the necessary software and score crosswalks for those who do not.

English-Spanish equivalence of the Health Literacy Assessment Using Talking Touchscreen Technology (Health LiTT).

Unbiased measurement instruments are needed to reliably estimate health literacy in diverse populations. The study aimed (a) to evaluate measurement equivalence of Health Literacy Assessment Using Talking Touchscreen Technology (Health LiTT) and (b) to compare Health LiTT scores between English- and Spanish-speaking individuals. Health LiTT and several patient-reported outcome instruments were completed by adult patients receiving care for type 2 diabetes at a safety net clinic. English-Spanish measurement equivalence was evaluated with an item response theory approach to differential item functioning (DIF) detection and impact. Health LiTT scores were compared by language using multivariable linear regression. Approximately equal numbers of English-speaking patients (n=146) and Spanish-speaking patients (n=149) with type 2 diabetes were enrolled. English participants were primarily non-Hispanic Black (65%); all Spanish participants were Hispanic. Six Health LiTT items were flagged for DIF. The Pearson correlation between unadjusted and DIF adjusted scores was 0.995; the mean difference of individual difference scores was 0.0005 (SD=0.0888). After adjusting for predisposing characteristics, enabling resources and need for care, Health LiTT scores were comparable for Spanish-speaking individuals versus English-speaking individuals. The effect of DIF items on Health LiTT scores appeared to be trivial. English-Spanish equivalence of Health LiTT will permit researchers to determine the independent effects of limited English proficiency and limited literacy.

African-American patients' preferences for a health center campaign promoting HIV testing: an exploratory study and future directions.

OBJECTIVE: In 2006, the US Centers for Disease Control and Prevention recommended routine HIV testing in health care settings and called for HIV testing campaigns targeting African Americans. In a 2011 national survey, 63% of African Americans wanted information on HIV testing. METHODS: In our study, 176 African Americans were surveyed to determine channels and spokespersons for an HIV testing campaign. RESULTS: Among 9 media channels, the top 3 ranked as "very likely" to convince them to get HIV tested were television, poster, and brochure. Among 10 spokespersons, the top 3 were doctor, nurse, and "real person like me." CONCLUSION: The media are a cost-effective strategy to promote HIV prevention. Posters and brochures are inexpensive and easy to reproduce for clinical settings. Television campaigns may be feasible in clinics with closed-circuit televisions. Research is needed on campaign messages. An effective health center HIV testing campaign may help mitigate the disproportionate toll HIV is having on African Americans.

Social support as a predictor of early diagnosis, linkage, retention, and adherence to HIV care: results from the steps study.

Social support predicts adherence to antiretroviral therapy (ART) in some settings but has not been well studied in persons newly diagnosed with HIV infection as a predictor of success through the cascade of HIV care. One hundred sixty-eight persons newly diagnosed with HIV completed the Medical Outcomes Study Social Support Survey at diagnosis, and 129 were successfully followed for more than 12 months. Outcomes were earlier diagnosis of HIV infection, linkage to care, retention in care, ART use by 1 year, and adherence to ART. Higher social support scores (either overall or on a subscale) were associated with earlier HIV diagnosis, timely linkage to care, and adherence to ART. Social support did not predict use of ART or retention in HIV care. Success navigating some of the steps of HIV care is more likely with social support, but it is not sufficient to ensure success across the continuum of care.

Olfactory assessment using the NIH Toolbox.

The human olfactory system provides us with information about our environment that is critical to our physical and psychological well-being. Individuals can vary widely in their ability to detect, recognize, and identify odors, but still be within the range of normal function. Although several standardized tests of odor identification are available, few specifically address the issues in testing very young children, most of whom are likely to be unfamiliar with many of the odor stimuli used in adult tests and have limited ability to read and identify labels to select among choices. Based on the format of the San Diego Odor Identification Test and the delivery system of the University of Pennsylvania Smell Identification Test, we developed 2 versions of an odor identification test using standardized odor stimuli in a scratch-and-sniff format in which participants match 5 (children) or 9 (adults) odors to pictures representing the odor source. Results from normative testing and validation showed that for most participants, the test could be completed in 5 minutes or less and that the poorer performance among the youngest children and the elderly was consistent with data from tests with larger numbers of items. Expanding on the pediatric version of the test with adult-specific and public health-relevant odors increased the ecological validity of the test and facilitated comparisons of intraindividual performance across developmental stages.

Improving benchmarking by using an explicit framework for the development of composite indicators: an example using pediatric quality of care.

BACKGROUND: The measurement of healthcare provider performance is becoming more widespread. Physicians have been guarded about performance measurement, in part because the methodology for comparative measurement of care quality is underdeveloped. Comprehensive quality improvement will require comprehensive measurement, implying the aggregation of multiple quality metrics into composite indicators. OBJECTIVE: To present a conceptual framework to develop comprehensive, robust, and transparent composite indicators of pediatric care quality, and to highlight aspects specific to quality measurement in children. METHODS: We reviewed the scientific literature on composite indicator development, health systems, and quality measurement in the pediatric healthcare setting. Frameworks were selected for explicitness and applicability to a hospital-based measurement system. RESULTS: We synthesized various frameworks into a comprehensive model for the development of composite indicators of quality of care. Among its key premises, the model proposes identifying structural, process, and outcome metrics for each of the Institute of Medicine's six domains of quality (safety, effectiveness, efficiency, patient-centeredness, timeliness, and equity) and presents a step-by-step framework for embedding the quality of care measurement model into composite indicator development. CONCLUSIONS: The framework presented offers researchers an explicit path to composite indicator development. Without a scientifically robust and comprehensive approach to measurement of the quality of healthcare, performance measurement will ultimately fail to achieve its quality improvement goals.

Disease and symptom burden in systemic sclerosis: a patient perspective.

OBJECTIVE: Studies of systemic sclerosis (SSc) have enlisted measures of physical function and generic health-related quality of life in order to determine health status. However, the measurements obtained may not discriminate other essential quality of life (QOL) domains important to patients with SSc. Our study used qualitative methods to evaluate patients' assessment of disease and symptom burden in SSc. METHODS: We conducted 3 focus groups and 5 in-depth interviews of patients with SSc. Guiding questions were based on 5 themes: patient awareness, SSc-related problems, disease activity and progression, symptoms, and expectations. Thematic analysis was conducted using qualitative, grounded theory methodologies. RESULTS: Symptoms such as pain (localized or generalized), fatigue, and malaise were reported to have major influence on daily activities and QOL. Gastrointestinal symptoms were among the worst prevalent and disruptive physical problems. All participants reported significant disruptions in their social lives, a burden considered by many as the worst consequence of their disease. All expressed major effects on their overall well-being because of emotional distress, including depression, low self-esteem, concerns with physical appearance, and uncertainty about future outcomes. CONCLUSION: Patients with SSc report significant symptomatic and emotional burdens, which, in turn, affect their QOL and psychological well-being. Additional research and fuller awareness of the disease and symptom-related burdens experienced by patients with SSc may lead to additional relevant outcome measures and more effective overall treatment programs.