New English and Spanish social health measures will facilitate evaluating health determinants.

OBJECTIVE: To develop psychometrically sound, culturally relevant, and linguistically equivalent English and Spanish self-report measures of social health guided by a comprehensive conceptual model and applicable across chronic illnesses. METHODS: The Patient-Reported Outcomes Measurement Information System (PROMIS) Social Health Workgroup implemented a mixed methods approach to evaluate earlier results (v1.0); expand and refine domain definitions and items; translate items into Spanish; and obtain qualitative feedback. Computer-based and paper/pencil questionnaire administration was conducted with a variety of U.S. respondent samples during 2009-2012. Analyses included exploratory factor analysis (EFA), confirmatory factor analysis (CFA), two-parameter logistic item response theory (IRT) modeling, evaluation of differential item functioning (DIF), and evaluation of criterion and construct validity. RESULTS: Qualitative feedback supported the conceptualization of the Social Health domain framework (Social Function and Social Relationships subcomponents). Validation testing participants (n = 2,208 English; n = 644 Spanish) were diverse in terms of gender, age, education, and ethnicity/race. EFA, CFA, and IRT identified 7 unidimensional factors with good model fit. There was no DIF by language, and good evidence of criterion and construct validity. CONCLUSIONS: PROMIS English and Spanish language instruments (v2.0), including computer-adaptive tests and fixed-length short forms, are publicly available for assessment of Social Function (Ability to Participate in Social Roles and Activities, and Satisfaction with Social Roles and Activities) and Social Relationships (Companionship; Emotional, Informational and Instrumental Support; and Social Isolation). Measures of social health will play a key role in applications that use ecologic (or determinants of health) models that emphasize how patients' social environments influence their health.

Ensuring comprehensive assessment of urinary problems in prostate cancer through patient-physician concordance.

OBJECTIVES: To examine the concordance between clinicians and men diagnosed with prostate cancer on a clinician-derived pathophysiological classification of the following self-reported urinary complications: storage (irritative), voiding (obstructive), and leakage/incontinence. MATERIALS AND METHODS: Fourteen urology experts classified 37 urinary function questionnaire items into 3 primary conceptual dimensions (e.g., storage [irritative], voiding [obstructive] and urinary leakage/incontinence) that would best reflect each item's content. In addition, 218 patient participants provided responses to the 37 items. Using classifications by experts to develop the conceptual framework, the structure was tested using confirmatory factor analyses with patient data. RESULTS: Expert consensus was achieved in the classification of 31 out of 37 items. Using the 3-factor conceptual framework and patient data, the fit indices for the overall correlated factor model suggested an acceptable overall model fit. The analyses of the separate domains showed acceptable fit for the storage/irritative domain and the leaking/incontinence domain. The dimensionality of the voiding/obstructive domain was too difficult to estimate. CONCLUSIONS: Our analysis found items that conceptually and psychometrically support 2 constructs (leaking/incontinence and storage/irritative). The consistency of this support between the groups suggests a clinical relevance that is useful in treating patients. We have conceptual support for a third hypothesis (voiding/obstructive), although there were too few items to assess this psychometrically. Relative motivating factors of bother and urinary complaints were not addressed and remain an unmet need in this field.

Emotion assessment using the NIH Toolbox.

One of the goals of the NIH Toolbox for Assessment of Neurological and Behavioral Function was to identify or develop brief measures of emotion for use in prospective epidemiologic and clinical research. Emotional health has significant links to physical health and exerts a powerful effect on perceptions of life quality. Based on an extensive literature review and expert input, the Emotion team identified 4 central subdomains: Negative Affect, Psychological Well-Being, Stress and Self-Efficacy, and Social Relationships. A subsequent psychometric review identified several existing self-report and proxy measures of these subdomains with measurement characteristics that met the NIH Toolbox criteria. In cases where adequate measures did not exist, robust item banks were developed to assess concepts of interest. A population-weighted sample was recruited by an online survey panel to provide initial item calibration and measure validation data. Participants aged 8 to 85 years completed self-report measures whereas parents/guardians responded for children aged 3 to 12 years. Data were analyzed using a combination of classic test theory and item response theory methods, yielding efficient measures of emotional health concepts. An overview of the development of the NIH Toolbox Emotion battery is presented along with preliminary results. Norming activities led to further refinement of the battery, thus enhancing the robustness of emotional health measurement for researchers using the NIH Toolbox.

Factors influencing therapists' decision-making in the acceptance of new technology devices in stroke rehabilitation.

OBJECTIVE: The aims of this study were to identify factors or barriers in therapists' decisions to acquire and use new technology devices (NTDs) and to examine rating differences across therapy disciplines. DESIGN: Literature review, key informant interviews, and focus group sessions were conducted to define a conceptual framework of acceptance/resistance of NTDs and to develop survey items. The survey was subsequently mailed to therapists. RESULTS: The survey responses showed that billability of services, having a sufficient caseload using a device, and initial cost were the most important factors in acquisition decisions; that patient acceptance, suitability for the setting, and logistics were the most important factors in use decisions; and that negative patient outcomes, problems with reimbursement, and perceived lack of patient interest were the most significant barriers to their use. Patient safety, motivation, and cognition were the most important patient considerations in the therapist's decision to use NTDs with a particular patient, whereas lack of progress, unavailability of the participants post discharge, and requiring too much patient effort were the most significant barriers to the use of NTDs with particular patients. Some rating variations existed across disciplines. CONCLUSIONS: This study confirmed that rehabilitation therapists consider clinical and practical factors, as well as the match between the patient and the device, when making acquisition and use decisions of NTDs. Research and education implications were discussed.

Bilingual health literacy assessment using the Talking Touchscreen/la Pantalla Parlanchina: Development and pilot testing.

OBJECTIVE: Current health literacy measures are too long, imprecise, or have questionable equivalence of English and Spanish versions. The purpose of this paper is to describe the development and pilot testing of a new bilingual computer-based health literacy assessment tool. METHODS: We analyzed literacy data from three large studies. Using a working definition of health literacy, we developed new prose, document and quantitative items in English and Spanish. Items were pilot tested on 97 English- and 134 Spanish-speaking participants to assess item difficulty. RESULTS: Items covered topics relevant to primary care patients and providers. English- and Spanish-speaking participants understood the tasks involved in answering each type of question. The English Talking Touchscreen was easy to use and the English and Spanish items provided good coverage of the difficulty continuum. CONCLUSION: Qualitative and quantitative results provided useful information on computer acceptability and initial item difficulty. After the items have been administered on the Talking Touchscreen (la Pantalla Parlanchina) to 600 English-speaking (and 600 Spanish-speaking) primary care patients, we will develop a computer adaptive test. PRACTICE IMPLICATIONS: This health literacy tool will enable clinicians and researchers to more precisely determine the level at which low health literacy adversely affects health and healthcare utilization.

Measuring fatigue for children with cancer: development and validation of the pediatric Functional Assessment of Chronic Illness Therapy-Fatigue (pedsFACIT-F).

Fatigue is a major concern for cancer patients of all ages. The lack of an appropriate assessment tool has impeded our understanding of its prevalence and significance, specifically in the pediatric cancer population. This paper documents the reliability and validity of the pediatric Functional Assessment of Chronic Illness Therapy-Fatigue (pedsFACIT-F) in a comprehensive manner. The 11-item PedsFACIT-F was developed via literature review, feedback from patient/parent/clinician, and a face-to-face consensus meeting. Its reliability and validity were examined on the basis of data from 159 pediatric patients with cancer via classical test theory and Rasch analysis. Results showed that the pedsFACIT-F demonstrated good internal consistency (Cronbach alpha), acceptable item-total correlations, and met the unidimensionality assumption set by confirmatory factor analysis. All items had acceptable fit statistics in the Rasch analysis and demonstrated stable measurement properties by age, sex, and cancer type. Scores on the pedsFACIT-F significantly discriminated between patients with and without anemia and among patients with different functional status; clinically relevant minimally important differences were estimated accordingly. The pedsFACIT-F was significantly correlated to the PedsQL Multidimensional Fatigue Scale. In conclusion, the pedsFACIT-F demonstrates satisfactory reliability and validity and can be a useful tool in clinical trials and other research.

Item banks and their potential applications to health status assessment in diverse populations.

In the context of an ethnically diverse, aging society, attention is increasingly turning to health-related quality of life measurement to evaluate healthcare and treatment options for chronic diseases. When evaluating and treating symptoms and concerns such as fatigue, pain, or physical function, reliable and accurate assessment is a priority. Modern psychometric methods have enabled us to move from long, static tests that provide inefficient and often inaccurate assessment of individual patients, to computerized adaptive tests (CATs) that can precisely measure individuals on health domains of interest. These modern methods, collectively referred to as item response theory (IRT), can produce calibrated "item banks" from larger pools of questions. From these banks, CATs can be conducted on individuals to produce their scores on selected domains. Item banks allow for comparison of patients across different question sets because the patient's score is expressed on a common scale. Other advantages of using item banks include flexibility in terms of the degree of precision desired; interval measurement properties under most circumstances; realistic capability for accurate individual assessment over time (using CAT); and measurement equivalence across different patient populations. This work summarizes the process used in the creation and evaluation of item banks and reviews their potential contributions and limitations regarding outcome assessment and patient care, particularly when they are applied across people of different cultural backgrounds.

Brief cognitive assessment and prediction of functional outcome in stroke.

To evaluate the ability to predict outcome with a brief measure of cognitive ability, we tested consecutive admissions who received inpatient rehabilitation for stroke with the Repeatable Battery for Assessment of Neuropsychological Symptoms (RBANS). Six months later, 34 discharged patients were contacted by telephone and were interviewed using a battery of functional outcome and quality of life measures. Multiple regression analysis showed that inpatient RBANS indexes predicted cognitive disability 6 months later. The present findings support the use of cognitive evaluations of patients with acute stroke to assist with prediction of outcome to be used in treatment planning.

Item banking to improve, shorten and computerize self-reported fatigue: an illustration of steps to create a core item bank from the FACIT-Fatigue Scale.

Fatigue is a common symptom among cancer patients and the general population. Due to its subjective nature, fatigue has been difficult to effectively and efficiently assess. Modern computerized adaptive testing (CAT) can enable precise assessment of fatigue using a small number of items from a fatigue item bank. CAT enables brief assessment by selecting questions from an item bank that provide the maximum amount of information given a person's previous responses. This article illustrates steps to prepare such an item bank, using 13 items from the Functional Assessment of Chronic Illness Therapy Fatigue Subscale (FACIT-F) as the basis. Samples included 1022 cancer patients and 1010 people from the general population. An Item Response Theory (IRT)-based rating scale model, a polytomous extension of the Rasch dichotomous model was utilized. Nine items demonstrating acceptable psychometric properties were selected and positioned on the fatigue continuum. The fatigue levels measured by these nine items along with their response categories covered 66.8% of the general population and 82.6% of the cancer patients. Although the operational CAT algorithms to handle polytomously scored items are still in progress, we illustrated how CAT may work by using nine core items to measure level of fatigue. Using this illustration, a fatigue measure comparable to its full-length 13-item scale administration was obtained using four items. The resulting item bank can serve as a core to which will be added a psychometrically sound and operational item bank covering the entire fatigue continuum.

The Moss Attention Rating Scale for traumatic brain injury: initial psychometric assessment.

OBJECTIVE: To examine the psychometric properties of the Moss Attention Rating Scale (MARS), a new observational rating scale for attention-related behaviors in traumatic brain injury (TBI). DESIGN: Prospective observational study. SETTING: Eight acute inpatient rehabilitation facilities that are part of the Traumatic Brain Injury Model Systems program. PARTICIPANTS: Two hundred twenty-eight patients with TBI requiring acute inpatient rehabilitation treatment. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Rasch analysis on the 53-item MARS (45 attention items, 8 control items) as rated separately by the treating occupational therapist and physical therapist. RESULTS: The MARS appeared to measure a single dimension and demonstrated good person separation (5.69) and reliability (.97). In post hoc assessment, misfitting attention items may not have required attention and control items that fit the dimension may have required at least rudimentary attention. Occupational therapists rated patients as slightly less attentive than did physical therapists. Overall, the scale was well targeted to an acute inpatient rehabilitation population. CONCLUSION: Our results provide preliminary support for the viability of developing an observational attention rating scale for use in inpatient TBI rehabilitation. Further research will need to explore the existence of subdimensions and provide further validation with reference to other neuropsychologic measures of attention and knowledge of lesion severity and localization.

Measuring unmet needs and services among persons with traumatic brain injury.

OBJECTIVES: (1) To develop a comprehensive list of needs and services appropriate for persons with traumatic brain injury (TBI); (2) to determine whether these needs and services formed unidimensional hierarchies from least common to most common; (3) to describe the relationship between unmet needs and services received; and (4) to estimate the extent to which a variety of demographic, injury, and service characteristics predict unmet needs. DESIGN: Statewide mailed survey. SETTING: Illinois communities. PARTICIPANTS: A total of 895 persons who had had a TBI recruited from Brain Injury Association members and rehabilitation service recipients. The median time post-TBI was 7 years; the median age was 37 years. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: A 27-item instrument assessing service needs and utilization of services, and equal-interval measures of needs and services derived with Rasch analysis. RESULTS: The most prevalent unmet needs were improving memory or problem-solving skills (51.9%), increasing income (50.5%), and improving job skills (46.3%). The instrument defined unidimensional and reliable constructs of needs and services. Persons with greater unmet needs tended to receive fewer services; to report lower life satisfaction and worse medical health and psychologic well-being since injury; to be younger, single, black, dependent in 1 or more daily activities; and to have more recent injuries. CONCLUSIONS: The results show the common pattern of unmet needs and services and emphasize the importance of comprehensive, statewide assessment of services and needs in developing policies.

Stroke rehabilitation: indwelling urinary catheters, enteral feeding tubes, and tracheostomies are associated with resource use and functional outcomes.

BACKGROUND AND PURPOSE: The aim of this study was to investigate the associations between tracheostomies, enteral feeding tubes, and indwelling urinary catheters and functional outcome measures, incidence of medical complications, and resource use in an inpatient stroke rehabilitation program. METHODS: A cohort of 1553 patients consecutively admitted for inpatient stroke rehabilitation was studied. Demographic and stroke characteristics, impairment (National Institutes of Health Stroke Scale) and disability level (Functional Independence Measure [FIM]), preexisting medical conditions, and the presence of tracheostomies, enteral feeding tubes, and indwelling urinary catheters were recorded at admission. The occurrence of medical complications during rehabilitation, discharge disability level, length of rehabilitation stay, and rehabilitation hospital charges were recorded at discharge. RESULTS: Compared with patients with no medical tubes, patients with 3 medical tubes had significantly higher National Institutes of Health Stroke Scale scores, lower admission and discharge FIM scores, reduced FIM efficiency scores (average FIM score change per day), and twice the number of medical complications. Patients with 3 medical tubes stayed 28 days longer in acute hospitalization and 20 days longer in rehabilitation compared with patients with no medical tubes. The presence of even a single medical tube was associated with longer length of stay, more medical complications during rehabilitation, and greater disability level at discharge. CONCLUSIONS: The presence of > or =1 medical tubes is associated with more severe and disabling strokes, an increased number of medical complications, longer acute and rehabilitation hospitalizations, and greater resource use.

Impact of respiratory complications on length of stay and hospital costs in acute cervical spine injury.

CONTEXT: Respiratory complications are frequent in patients with acute cervical spinal injury (CSI); however, the importance of respiratory complications experienced during the initial hospitalization following injury is unknown. OBJECTIVE: To determine if respiratory complications experienced during the initial acute-care hospitalization in patients with acute traumatic cervical spinal injury (CSI) are more important determinants of the length of stay (LOS) and total hospital costs than level of injury. DESIGN: A retrospective analysis of an inception cohort for the 5-year period from 1993 to 1997. SETTING: The Midwest Regional Spinal Cord Injury Care System, a model system for CSI, at Northwestern Memorial Hospital, a tertiary referral academic medical center. PATIENTS: Four hundred thirteen patients admitted with acute CSI and discharged alive. Patients with concurrent thoracic injuries were excluded. MAIN OUTCOME MEASURES: Initial acute-care LOS and hospital costs. RESULTS: Both mean LOS and hospital costs increased monotonically with the number of respiratory complications experienced (p < 0.001, between none and one complication, and between one and two complications; p = 0.24 between two and three or more complications). A hierarchical regression analysis showed that four variables-use of mechanical ventilation, occurrence of pneumonia, need for surgery, and use of tracheostomy-explain nearly 60% of the variance in both LOS and hospital costs. Each of these variables, when considered independently, is a better predictor of hospital costs than level of injury. CONCLUSIONS: The number of respiratory complications experienced during the initial acute-care hospitalization for CSI is a more important determinant of LOS and hospital costs than level of injury.