Mortality among veterans with epilepsy: Temporal significance of traumatic brain injury exposure.

OBJECTIVE: Epilepsy is associated with significant mortality risk. There is limited research examining how traumatic brain injury (TBI) timing affects mortality in relation to the onset of epilepsy. We aimed to assess the temporal relationship between epilepsy and TBI regarding mortality in a cohort of post-9/11 veterans. METHODS: This retrospective cohort study included veterans who received health care in the Defense Health Agency and the Veterans Health Administration between 2000 and 2019. For those diagnosed with epilepsy, the index date was the date of first antiseizure medication or first seizure; we simulated the index date for those without epilepsy. We created the study groups by the index date and first documented TBI: (1) controls (no TBI, no epilepsy), (2) TBI only, (3) epilepsy only, (4) TBI before epilepsy, (5) TBI within 6 months after epilepsy, and (6) TBI >6 months after epilepsy. Kaplan-Meier estimates of all-cause mortality were calculated, and log-rank tests were used to compare unadjusted cumulative mortality rates among groups compared to controls. Cox proportional hazard models were used to compute hazard ratios (HRs) with 95% confidence intervals (CIs). RESULTS: Among 938 890 veterans, 27 436 (2.92%) met epilepsy criteria, and 264 890 (28.22%) had a TBI diagnosis. Mortality was higher for veterans with epilepsy than controls (6.26% vs. 1.12%; p < .01). Veterans with TBI diagnosed ≤6 months after epilepsy had the highest mortality hazard (HR = 5.02, 95% CI = 4.21-5.99) compared to controls, followed by those with TBI before epilepsy (HR = 4.25, 95% CI = 3.89-4.58), epilepsy only (HR = 4.00, 95% CI = 3.67-4.36), and TBI >6 months after epilepsy (HR = 2.49, 95% CI = 2.17-2.85). These differences were significant across groups. SIGNIFICANCE: TBI timing relative to epilepsy affects time to mortality; TBI within 6 months after epilepsy or before epilepsy diagnosis was associated with earlier time to death compared to those with epilepsy only or TBI >6 months after epilepsy.

A Partner-Engaged Approach to Developing an Implementation Research Logic Model for a Traumatic Brain Injury-Intensive Evaluation and Treatment Program.

BACKGROUND: A partnered evaluation project with Veterans Health Administration Physical Medicine and Rehabilitation program office uses a partner-engaged approach to characterize and evaluate the national implementation of traumatic brain injury (TBI)Intensive Evaluation and Treatment Program (IETP). OBJECTIVE: This paper illustrates a partner-engaged approach to contextualizing the IETP within an implementation research logic model (IRLM) to inform program sustainment and spread. SETTING: The project was conducted at five IETP sites: Tampa, Richmond, San Antonio, Palo Alto, and Minneapolis. PARTICIPANTS: Partners included national and site program leaders, clinicians, Department of Defense Referral Representatives, and researchers. Participants included program staff (n = 46) and Service Members/Veterans (n = 48). DESIGN: This paper represents a component of a larger participatory-based concurrent mixed methods quality improvement project. MAIN MEASURES: Participant scripts and demographic surveys. METHODS: Datasets were analyzed using rapid iterative content analysis; IETP model was iteratively revised with partner feedback. Each site had an IETP clinical team member participate. The IRLM was contextualized within the Consolidated Framework for Implementation Research (CFIR); systematic consensus building expert reviewed implementation strategies; RE-AIM (Reach, Effectiveness, Adoption, Implementation, Maintenance); and Implementation Outcomes Framework (IOF). RESULTS: Analyses and partner feedback identified key characteristics, determinants, implementation strategies, mechanisms, and outcomes. CONCLUSIONS: This partner-engaged IRLM informs implementation and sustainment of a rehabilitation program for individuals with TBI. Findings will be leveraged to examine implementation, standardize core outcome measurements, and inform knowledge translation.

Validation of the Utah Photophobia Symptom Impact Scale (version 2) as a headache-specific photophobia assessment tool.

OBJECTIVE: To present an updated version of the Utah Photophobia Symptom Impact Scale version 2 (UPSIS2), providing robust clinical and psychometric validation, to improve headache-specific evaluation of light sensitivity and headache-related photophobia. BACKGROUND: The original UPSIS filled a gap in available tools for assessment of headache-associated light sensitivity by providing patient-reported evaluation of the impact of light sensitivity on activities of daily living (ADLs). We have since revised the original questionnaire to provide a more robust item construct and refined validation approach. METHODS: We conducted a psychometric validation of the UPSIS2 through a primary analysis of an online survey of volunteers with recurrent headaches recruited from the University of Utah clinics and surrounding community. Volunteers completed the original UPSIS and UPSIS2 questionnaire versions in addition to measures of headache impact, disability, and frequency. The UPSIS2 now includes a pre-defined recall period and a 1-4 Likert scale with standardized response anchors to improve clarity. Internal construct validity, external construct validity, and test-retest reliability, were evaluated. RESULTS: Responses were obtained from 163 volunteers, with UPSIS2 scores ranging from 15 to 57 (out of a possible 15-60) with a mean (standard deviation) of 32.4 (8.80). Construct validity was satisfactory, as evidenced by sufficient unidimensionality, monotonicity, and local independence. Reliability was excellent, with Rasch test reliability = 0.90 and Cronbach's alpha = 0.92, and an intraclass correlation of 0.79 (95% confidence interval 0.65-0.88) for participants who took the test twice. UPSIS2 correlates well with other headache measures (Spearman's correlations >0.50), as well as the original UPSIS (Spearman's correlation = 0.87), indicating good convergent validity. UPSIS2 scores differ significantly across International Classification of Headache Disorders (third edition) groups, indicating good known group validity. CONCLUSION: The UPSIS2 provides a well-validated headache-specific outcome measure for the assessment of photophobia impact on ADLs.

Examining the role of race and quality of home health agencies in delayed initiation of home health services for individuals with Alzheimer's disease and related dementias (ADRD).

INTRODUCTION: We examined differences in the timeliness of the initiation of home health care by race and the quality of home health agencies (HHA) among patients with Alzheimer's disease and related dementias (ADRD). METHODS: Medicare claims and home health assessment data were used for the study cohort: individuals aged ≥65 years with ADRD, and discharged from the hospital. Home health latency was defined as patients receiving home health care after 2 days following hospital discharge. RESULTS: Of 251,887 patients with ADRD, 57% received home health within 2 days following hospital discharge. Black patients were significantly more likely to experience home health latency (odds ratio [OR] = 1.15, 95% confidence interval [CI] = 1.11-1.19) compared to White patients. Home health latency was significantly higher for Black patients in low-rating HHA (OR = 1.29, 95% CI = 1.22-1.37) compared to White patients in high-rating HHA. DISCUSSION: Black patients are more likely to experience a delay in home health care initiation than White patients.

Measuring the Sexual Acceptability of Contraception: Psychometric Examination and Development of a Valid and Reliable Prospective Instrument.

BACKGROUND: People's sexual experiences have a strong association with contraceptive satisfaction and continuation, but no measures exist to specifically assess contraceptive-related sexual acceptability. AIM: This study developed and examined the psychometric properties of reliability, separation, and item fit of a new Contraceptive Sexual Acceptability (CSA) instrument. METHODS: Enrolled participants initiating a new contraceptive method from the HER Salt Lake longitudinal cohort study contributed baseline survey responses for scale development. The study included the Female Sexual Function Index, the New Sexual Satisfaction Scale, measures of physical and mood-related side effects, and self-reported perceptions of contraception's sexual impacts. Items from these measures' served as the basis for analyses. We analyzed responses using descriptive techniques and modeled using exploratory factor (EFA) and bifactor analyses (BFA). The Masters' Partial Credit Rasch method modeled reliability, separation, and item fit statistics. Here we evaluate (i) the reproducibility of relative measure location on the modeled linear latent variable, (ii) the number of statistically unique performance levels that can be distinguished by the measure, and (iii) the discrepancy between item responses and expectations of the model. Psychometric findings and theoretical models informed item reduction and final scale development. OUTCOMES: We developed a 10-item Contraceptive Sexual Acceptability scale that exceeded the thresholds and sufficiently covered domains for use in contraceptive research and clinical settings. RESULTS: Starting with data on 39-items from 4,387 individuals, we identified 10-items that best measured the CSA latent construct. The Rasch model included a total of 5 calibrations. We reduced items based on bifactor analysis and surpassed unidimensionality thresholds (OH = 0.84, ECV = 0.74) set a priori. The final items included questions with scaled responses about pleasure and orgasm (orgasm quality, orgasm frequency, giving partner pleasure), physical (arousal and function) and psychological (emotional connection, surrender) components, general questions of satisfaction and frequency, and a measure of perceived impact of contraception on sexual experiences in the previous 4 weeks. CLINICAL IMPLICATIONS: The 10-item CSA instrument covers physical and psychological aspects of contraceptive sexual acceptability and can be used in clinical settings. STRENGTHS & LIMITATIONS: The unidimensional CSA instrument offers a brief, yet comprehensive assessment of sexual acceptability. Given the limited diversity of the sample, implementation of this scale in contraceptive research and clinical interactions should be evaluated and validated in more diverse settings. CONCLUSION: Attuning to sexual acceptability could ultimately help contraceptive clients find methods that better meet their needs and preferences. Sanders JN, Kean J, Zhang C, et al. Measuring the Sexual Acceptability of Contraception: Psychometric Examination and Development of a Valid and Reliable Prospective Instrument. J Sex Med 2022;19:507-520.

Clinicians' perspectives on the integration of electronic patient-reported outcomes into dermatology clinics: a qualitative study.

BACKGROUND: Skin conditions can have profound negative symptomatic and psychological effects. Failure to address these effects can lead to poor treatment adherence and/or patient dissatisfaction. Despite patient-reported outcome (PRO) use being highly recommended, real-world adoption has been slow. OBJECTIVES: To assess clinicians' perceived facilitators and barriers to using PROs in daily practice. METHODS: We conducted in-person semi-structured interviews with 19 clinicians and thematic analysis of transcripts. RESULTS: Three main themes emerged: (1) clinicians' attitudes about the value of Skindex-16 in daily practice, (2) patient attitudes influencing clinicians' use of Skindex-16, and (3) clinicians' perceptions of their ability to use PROs successfully for clinical care. Clinicians recognized benefits to using Skindex-16, such as revealing patients' hidden concerns and highlighting discrepancies with the clinician's severity assessments. Conversely, clinicians also identified limitations, such as time constraints and lack of relevance for some skin conditions. Patient complaints about PRO relevance have influenced clinicians' use of Skindex-16 negatively. Finally, some clinicians recognized the need for more training in score interpretation and implementation strategies for optimal clinical flow. CONCLUSIONS: While most clinicians believed PROs like Skindex-16 can be useful for patient care, barriers need to be addressed to make PROs more practical for routine clinical care.

Clinical features of dementia cases ascertained by ICD coding in LIMBIC-CENC multicenter study of mild traumatic brain injury.

OBJECTIVE: Describe dementia cases identified through International Classification of Diseases (ICD) coding in the Long-term Impact of Military-relevant Brain Injury Consortium - Chronic Effects of Neurotrauma Consortium (LIMBIC-CENC) multicenter prospective longitudinal study (PLS) of mild traumatic brain injury (mTBI). DESIGN: Descriptive case series using cross-sectional data. METHODS: Veterans Affairs (VA) health system data including ICD codes were obtained for 1563 PLS participants through the VA Informatics and Computing Infrastructure (VINCI). Demographic, injury, and clinical characteristics of Dementia positive and negative cases are described. RESULTS: Five cases of dementia were identified, all under 65 years old. The dementia cases all had a history of blast-related mTBI and all had self-reported functional problems and four had PTSD symptomatology at the clinical disorder range. Cognitive testing revealed some deficits especially in the visual memory and verbal learning and memory domains, and that two of the cases might be false positives. CONCLUSIONS: ICD codes for early dementia in the VA system have specificity concerns, but could be indicative of cognitive performance and self-reported cognitive function. Further research is needed to better determine links to blast exposure, blast-related mTBI, and PTSD to early dementia in the military population.

Responsiveness of PROMIS and Patient Health Questionnaire (PHQ) Depression Scales in three clinical trials.

BACKGROUND: The PROMIS depression scales are reliable and valid measures that have extensive normative data in general population samples. However, less is known about how responsive they are to detect change in clinical settings and how their responsiveness compares to legacy measures. The purpose of this study was to assess and compare the responsiveness of the PROMIS and Patient Health Questionnaire (PHQ) depression scales in three separate samples. METHODS: We used data from three clinical trials (two in patients with chronic pain and one in stroke survivors) totaling 651 participants. At both baseline and follow-up, participants completed four PROMIS depression fixed-length scales as well as legacy measures: Patient Health Questionnaire 9-item and 2-item scales (PHQ-9 and PHQ-2) and the SF-36 Mental Health scale. We measured global ratings of depression change, both prospectively and retrospectively, as anchors to classify patients as improved, unchanged, or worsened. Responsiveness was assessed with standardized response means, statistical tests comparing change groups, and area-under-curve analysis. RESULTS: The PROMIS depression and legacy scales had generally comparable responsiveness. Moreover, the four PROMIS depression scales of varying lengths were similarly responsive. In general, measures performed better in detecting depression improvement than depression worsening. For all measures, responsiveness varied based on the study sample and on whether depression improved or worsened. CONCLUSIONS: Both PROMIS and PHQ depression scales are brief public domain measures that are responsive (i.e., sensitive to change) and thus appropriate as outcome measures in research as well as for monitoring treatment in clinical practice. Trial registration ClinicalTrials.gov ID: NCT01236521, NCT01583985, NCT01507688.

Characterizing health care utilization following hospitalization for a traumatic brain injury: a retrospective cohort study.

Objective: The purpose of this study was to characterize health services utilization among individuals hospitalized with a traumatic brain injury (TBI) 1-year post-injury.Methods: Using a retrospective cohort design, adult patients (n = 32, 042) hospitalized with a traumatic brain injury between 2005 and 2014 were selected from a statewide traumatic brain injury registry. Data on health services utilization for 1-year post-injury were extracted from electronic medical and administrative records. Descriptive statistics and logistic regression were used to characterize the cohort and a subgroup of superutilizers of health services.Results: One year after traumatic brain injury, 56% of participants used emergency department services, 80% received inpatient services, and 93% utilized outpatient health services. Superutilizers had ≥3 emergency department visits, ≥3 inpatient admissions, or ≥26 outpatient visits 1-year post-injury. Twenty-six percent of participants were superutilizers of emergency department services, 30% of inpatient services, and 26% of outpatient services. Superutilizers contributed to 81% of emergency department visits, 70% of inpatient visits, and 60% of outpatient visits. Factors associated with being a superutilizer included sex, race, residence, and insurance type.Conclusions: Several patient characteristics and demographic factors influenced patients' healthcare utilization post-TBI. Findings provide opportunities for developing targeted interventions to improve patients' health and traumatic brain injury-related healthcare delivery.

Validation of the Delirium Diagnostic Tool-Provisional (DDT-Pro) With Medical Inpatients and Comparison With the Confusion Assessment Method Algorithm.

OBJECTIVE: Delirium remains underdetected as a result of its broad constellation of symptoms and the inadequate neuropsychiatric expertise of most medical-surgical clinicians. Brief, accurate tools are needed to enhance detection. METHODS: The authors extended validation of the Delirium Diagnostic Tool-Provisional (DDT-Pro), originally validated in a study of inpatients with traumatic brain injury for diagnosis of delirium by nonexpert clinicians, for 200 general medical inpatients in Colombia. The three structured, quantitatively rated items in DDT-Pro represent the three core delirium domains. RESULTS: High interrater reliability between physician and nurse (0.873) administrators, internal consistency (>0.81), and content validity were found. Compared with independent reference standard diagnosis with DSM-5 or the Delirium Rating Scale-Revised-98, the area under the receiver operating characteristic (ROC) curve (global diagnostic accuracy) range was 93.8%-96.3%. ROC analysis revealed the same cutoff score (≤6) as that for the original study, with somewhat lower sensitivities of 88.0%-90.0% and specificities of 85.3%-81.2% (independent expert physician or nurse ratings). Even when rated by a trained expert physician, the original version of the Confusion Assessment Method algorithm (CAM-A) performed moderately, with lower sensitivities (61.8%-70.0%) than the DDT-Pro (88.0%-100%) and somewhat higher specificities (84.8%-95.3% versus 67.4%-86.7%), with values depending on dementia status, reference standard, and rater type. Accuracies for the DDT-Pro and CAM-A were comparable (DDT-Pro: 83.0%-87.5% versus CAM-A: 87.5%-88.5%), although lower in the dementia subgroup, especially for CAM-A. However, these tools were significantly discordant, especially in negative cases, which suggests that they do not detect diagnosis of patients in the same way. CONCLUSIONS: The DDT-Pro had high validity and reliability in provisional delirium diagnosis by physicians and nonexpert clinicians, although further validation is warranted before widespread use can be recommended.

Assessing the personal impact of epilepsy in a population-based cohort of Veterans.

PURPOSE: Epilepsy impacts patient lives in multidimensional ways. Although previous work has investigated epilepsy impact on health status, little is known about the overall quantified impact of epilepsy in Veterans. Our goal was to describe the impact of epilepsy on Veterans' lives using the Personal Impact of Epilepsy Scale (PIES) and determine the patient and clinical characteristics most strongly correlated with epilepsy impact. We described cohort characteristics and developed regression models to determine which characteristics were most strongly associated with PIES subscale (seizure, medication, comorbidity) scores and quality of life (QOL). RESULTS: Approximately 36% of those who were invited responded to the survey. Of the 438 respondents included in the analyses, roughly 50% were aged 45-64 years (35% >65; 14% 18-44); 19% were women. Almost 90% had previously received care by an epilepsy specialist, 37% of which was in Veterans Health Administration (VHA) and 38% in both VHA and community. The PIES scores were moderately low (mean: 88.68, [standard deviation (SD) = 63.24]; 300 total). The PIES overall and subscale scores were significantly lower for older Veterans with epilepsy (VWE) (>65) compared with younger (18-44 years) and middle-aged (45-64 years) VWE [p < 0.001], indicating that older Veterans had a lower epilepsy impact overall, and for seizures, medication, and comorbidity. The younger and middle-aged VWE had a significantly higher proportion with psychiatric diagnosis compared with older VWE [p < 0.001]. There was a trend for significance for the overall PIES scores by gender, with women having total higher (worse) scores (mean = 93.10, SD = 69.68) than men (mean = 74.39, SD = 59.97), which was driven by a statistically higher score on the seizure subscale for women (mean = 27.66, SD = 27.97) compared with men (mean = 19.29, SD 25.35; p = 0.04). Regression models revealed that frequent seizures (>1/month, >2/month) and diagnoses of dementia significantly predicted higher (more negative) Seizure Severity PIES score [all p < 0.05]. Frequent seizures (>1/month), number of antiepileptic drugs (AEDs), and diagnosis of dementia predicted negative impact, and older age predicted positive impact for medication subscale. Frequent seizures (>1/month) and diagnoses of depression and dementia predicted negative mood and social impact [all p < 0.05]. Seizure frequency (>2/month) was the only variable that significantly predicted lack of excellent QOL [p < 0.05]. Effects for gender were not significant after controlling for other variables. CONCLUSIONS: Findings were similar to a prior study of generic health outcomes in younger and older VWE using the 36-Item Short Form Survey (SF-36). Seizure frequency was consistently associated with negative impact of epilepsy in all age groups. While dementia and other diagnosed health conditions also contributed to epilepsy impact, older VWE had significantly lower PIES scores even after controlling for physical conditions and dementia. Lower (better) scores for comorbidity and medication scales in older VWE may be due to fewer diagnosed psychiatric comorbidities and psychiatric medication that have similar cognitive impact as AEDs, and which may also interact with AEDs. Implementation of patient self-management programs to improve seizure control may reduce epilepsy impact for Veterans and reduce Veterans Affairs (VA) healthcare utilization. The PIES may also be useful to measure outcomes of self-management interventions.

A Sequential Multiple-Assignment Randomized Trial (SMART) for Stepped Care Management of Low Back Pain in the Military Health System: A Trial Protocol.

BACKGROUND: The Defense Health Agency has prioritized system-level pain management initiatives within the Military Health System (MHS), with low back pain as one of the key focus areas. A stepped care model focused on nonpharmacologic treatment to promote self-management is recommended. Implementation of stepped care is complicated by lack of information on the most effective nonpharmacologic strategies and how to sequence and tailor the various available options. The Sequential Multiple-Assignment Randomization Trial for Low Back Pain (SMART LBP) is a multisite pragmatic trial using a SMART design to assess the effectiveness of nonpharmacologic treatments for chronic low back pain. DESIGN: This SMART trial has two treatment phases. Participants from three military treatment facilities are randomized to 6 weeks of phase I treatment, receiving either physical therapy (PT) or Army Medicine's holistic Move2Health (M2H) program in a package specific to low back pain. Nonresponders to treatment in phase I are again randomized to phase II treatment of combined M2H + PT or mindfulness-based treatment using the Mindfulness-Oriented Recovery Enhancement (MORE) program. The primary outcome is the Patient-Reported Outcomes Measurement Information System pain interference computer-adapted test score. SUMMARY: This trial is part of an initiative funded by the National Institutes of Health, Veterans Affairs, and the Department of Defense to establish a national infrastructure for effective system-level management of chronic pain with a focus on nonpharmacologic treatments. The results of this study will provide important information on nonpharmacologic care for chronic LBP in the MHS embedded within a stepped care framework.

Post-traumatic Confusional State: A Case Definition and Diagnostic Criteria.

In response to the need to better define the natural history of emerging consciousness after traumatic brain injury and to better describe the characteristics of the condition commonly labeled posttraumatic amnesia, a case definition and diagnostic criteria for the posttraumatic confusional state (PTCS) were developed. This project was completed by the Confusion Workgroup of the American Congress of Rehabilitation Medicine Brain Injury Interdisciplinary Special Interest group. The case definition was informed by an exhaustive literature review and expert opinion of workgroup members from multiple disciplines. The workgroup reviewed 2466 abstracts and extracted evidence from 44 articles. Consensus was reached through teleconferences, face-to-face meetings, and 3 rounds of modified Delphi voting. The case definition provides detailed description of PTCS (1) core neurobehavioral features, (2) associated neurobehavioral features, (3) functional implications, (4) exclusion criteria, (5) lower boundary, and (6) criteria for emergence. Core neurobehavioral features include disturbances of attention, orientation, and memory as well as excessive fluctuation. Associated neurobehavioral features include emotional and behavioral disturbances, sleep-wake cycle disturbance, delusions, perceptual disturbances, and confabulation. The lower boundary distinguishes PTCS from the minimally conscious state, while upper boundary is marked by significant improvement in the 4 core and 5 associated features. Key research goals are establishment of cutoffs on assessment instruments and determination of levels of behavioral function that distinguish persons in PTCS from those who have emerged to the period of continued recovery.

Effect of Preexisting and Co-Occurring Comorbid Conditions on Recovery in the 5 Years After Rehabilitation for Traumatic Brain Injury.

OBJECTIVE: To determine the relationship between comorbid health conditions and the trajectory of functional recovery 5 years following traumatic brain injury (TBI) rehabilitation. SETTING: Two acute rehabilitation facilities. PARTICIPANTS: A total of 407 patients with primary diagnosis of TBI. DESIGN: Prospective, observational. MAIN MEASURES: Functional Independence Measure Cognitive and Motor scores. RESULTS: Female gender was negatively associated with the trajectory of motor recovery (P < .001). TBI severity was negatively associated with both motor and cognitive recovery and interacted with time after injury (both Ps < .0001). Hypertension was negatively associated with both motor (P < .0001) and cognitive (P = .0121) recovery, although this relationship diminished over time for motor function (P = .0447). Cardiac conditions were negatively associated with motor recovery (P = .0204), and rate of cognitive recovery was more rapid for patients with cardiac conditions (P = .0088). Depressed patients recovered cognitive function more quickly than those who were not depressed (P = .0196). Diabetes was negatively associated with motor function (P = .0088). Drug/alcohol use was positively associated with motor function (P = .0036). CONCLUSIONS: Injury severity remains an important predictor of long-term recovery; however, certain comorbid medical conditions are negatively associated with functional abilities over the first 5 years after injury. Patients being discharged from TBI rehabilitation with comorbid cardiac, hypertensive, diabetic, and/or depressive conditions may benefit from early and ongoing clinical surveillance.

Incorporating PROMIS Symptom Measures into Primary Care Practice-a Randomized Clinical Trial.

BACKGROUND: Symptoms account for more than 400 million clinic visits annually in the USA. The SPADE symptoms (sleep, pain, anxiety, depression, and low energy/fatigue) are particularly prevalent and undertreated. OBJECTIVE: To assess the effectiveness of providing PROMIS (Patient-Reported Outcome Measure Information System) symptom scores to clinicians on symptom outcomes. DESIGN: Randomized clinical trial conducted from March 2015 through May 2016 in general internal medicine and family practice clinics in an academic healthcare system. PARTICIPANTS: Primary care patients who screened positive for at least one SPADE symptom. INTERVENTIONS: After completing the PROMIS symptom measures electronically immediately prior to their visit, the 300 study participants were randomized to a feedback group in which their clinician received a visual display of symptom scores or a control group in which scores were not provided to clinicians. MAIN MEASURES: The primary outcome was the 3-month change in composite SPADE score. Secondary outcomes were individual symptom scores, symptom documentation in the clinic note, symptom-specific clinician actions, and patient satisfaction. KEY RESULTS: Most patients (84%) had multiple clinically significant (T-score ≥ 55) SPADE symptoms. Both groups demonstrated moderate symptom improvement with a non-significant trend favoring the feedback compared to control group (between-group difference in composite T-score improvement, 1.1; P = 0.17). Symptoms present at baseline resolved at 3-month follow-up only one third of the time, and patients frequently still desired treatment. Except for pain, clinically significant symptoms were documented less than half the time. Neither symptom documentation, symptom-specific clinician actions, nor patient satisfaction differed between treatment arms. Predictors of greater symptom improvement included female sex, black race, fewer medical conditions, and receiving care in a family medicine clinic. CONCLUSIONS: Simple feedback of symptom scores to primary care clinicians in the absence of additional systems support or incentives is not superior to usual care in improving symptom outcomes. TRIAL REGISTRATION: clinicaltrials.gov identifier: NCT02383862.

Delirium Phenotype by Age and Sex in a Pooled Data Set of Adult Patients.

The authors aimed to evaluate whether the clinical phenotype of delirium differs if dichotomized either by sex or age (cutoff age, 65 years old) in a pooled sample of 406 nondemented adult patients with delirium as defined by DSM-IV criteria. Delirium characteristics were measured with the Delirium Rating Scale-Revised-98 (DRS-R-98). DRS-R-98 items were subgrouped to represent subscores representing the three core domains of delirium (cognitive, higher-order thinking, and circadian), noncore accessory symptoms (psychotic and affective), and diagnostic characteristics (temporal onset, fluctuation, and physical disorder). The authors compared means of the DRS-R-98 subscores and medians of individual items. Exploratory factor analyses evaluated delirium characteristics for each subgroup for each of the four groups-male, female, nongeriatric, and geriatric-while taking into account active medical diagnoses. Males had higher scores on motor agitation and affective lability (behavioral), whereas females had a higher frequency of hypoactive delirium. Delirium had a two-factor structure that emerged in all four study groups, and all its core domains loaded (i.e., correlated together) onto some of these two factors and with circadian domain correlating with accessory symptoms. Although the influence of a variety of active diagnoses on delirium was small and complex, traumatic brain injury had a clear influence on cognitive domain and abrupt onset. Age had a mild influence over delirium characteristics for both males and females. In conclusion, the authors confirmed a two-factor structure for delirium phenomenology, regardless of age and sex, with few significant differences between etiological groups.

Setting a patient-centered research agenda for cerebral palsy: a participatory action research initiative.

AIM: To establish a patient-centered research agenda for cerebral palsy (CP). METHOD: We engaged a large cross-section of the extended community of people living with CP and those providing healthcare to people with CP ('the community') in an educational series and collaborative survey platform to establish an initial list of prioritized research ideas. After online workshops, a facilitated Delphi process was used to select the 20 highest priorities. Select participants attended an in-person workshop to provide comment and work toward consensus of research priorities. RESULTS: A research agenda for CP was developed by the community, which included consumers, clinicians, and researchers interested in advancing the established research agenda. The results included the top 16 research concepts produced by the process to shape and steward the research agenda, and an engaged cross-section of the community. INTERPRETATION: It has been shown that proactively engaging consumers with clinical researchers may provide more meaningful research for the community. This study suggests that future research should have more focus on interventions and outcomes across the lifespan with increased emphasis on the following outcome measures: function, quality of life, and participation. WHAT THIS PAPER ADDS: A patient-centered research agenda for cerebral palsy was established. Comparative effectiveness of interventions, physical activity, and understanding ageing were leading themes. Longitudinal studies across the lifespan, clinical spectrum, and ages were highly ranked. Participants reported high value for participation outcomes. Participants reported great appreciation for the engagement between consumers and clinician researchers.

A qualitative study of patients' perceptions of the utility of patient-reported outcome measures of symptoms in primary care clinics.

PURPOSE: Sleep, pain, anxiety, depression, and low energy/fatigue (SPADE pentad) symptoms are common, but often unrecognized and undertreated in primary care. In an effort to improve symptom outcomes, primary care clinics are integrating patient-reported outcome measures (PROs), such as the Patient-Reported Outcome Measurement Information System (PROMIS), into practice. Whether patients with SPADE symptoms perceive these measures as useful is unknown. The purpose of this qualitative study was to explore patients' perceptions of the utility of symptom-based PROs in primary care. METHODS: As part of a mixed-methods study, 23 patients (age 24-77 years) with one or more SPADE symptoms participated in one-on-one interviews about the use, implementation and visual display of PROMIS. All interviews were audio-recorded, transcribed, and analyzed using thematic analysis. RESULTS: Five themes emerged: (1) PROs may foster communication about symptoms; (2) data from PROs may prompt clinical actions; (3) the visual display of symptom scores could be useful for patients and providers, though modifications may enhance interpretation; (4) implementation may vary according to patients' perception of PRO features (e.g., length); and (5) PROs may be useful, but only to the extent that they are valued, prioritized, and used. CONCLUSIONS: According to patients, the use of PROs to measure symptoms in primary care clinics has the potential to be useful. However, patients are reluctant to complete PROs if they perceive that clinicians do not use the measures to improve care. Barriers to implementation in primary care (e.g., duration of visit) should be addressed to enhance the utility of PROs. Clinical trial registration ClinicalTrials.gov ID: NCT02383862.

Rasch Analysis, Dimensionality, and Scoring of the Neuropsychiatric Inventory Irritability and Aggression Subscales in Individuals With Traumatic Brain Injury.

OBJECTIVES: To develop, for versions completed by individuals with traumatic brain injury (TBI) and an observer, a more precise metric for the Neuropsychiatric Inventory (NPI) Irritability and Aggression subscales using all behavioral item ratings for use with individuals with TBI and to address the dimensionality of the represented behavioral domains. DESIGN: Rasch and confirmatory factor analyses of retrospective baseline NPI data from 3 treatment studies. SETTING: Postacute rehabilitation clinic. PARTICIPANTS: NPI records (N = 525) consisting of observer ratings (n = 287) and self-ratings (n = 238) by participants with complicated mild, moderate, or severe TBI at least 6 months postinjury. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Frequency and severity ratings from NPI Irritability/Lability and Agitation/Aggression subscales. RESULTS: Confirmatory factor analyses of both observer and participant ratings showed good fit for either a 1-factor or a 2-factor solution. Consistent with this, the Rasch model also fit the data well with aggression items indicating the more severe end of the construct and irritability items populating the milder end. CONCLUSIONS: Irritability and aggression appear to represent different levels of severity of a single construct. The derived Rasch metric offers a measure of this construct based on responses to all specific items that is appropriate for parametric statistical analysis and may be useful in research and clinical assessments of individuals with TBI.

Access to health services for moderate to severe TBI in Indiana: patient and caregiver perspectives.

OBJECTIVE: We examined patient and caregiver experiences of health services for moderate to severe traumatic brain injury (TBI) in Indiana. The objective was to provide an understanding of their lived experiences and to inform policies and practices for health services delivery for TBI. METHODS: We conducted qualitative, semi-structured interviews with 62 participants (34 patients and 28 caregivers). Data analysis was guided by constructive grounded theory. RESULTS: Three interrelated themes emerged from the data and characterised participants' experiences accessing health services for TBI: 1) inadequate access to health services; 2) unavailability of specialised, age-appropriate, and long-term health services; and 3) transportation barriers to health services that limit access to care and amplify rural health disparities for patients. CONCLUSION: Our findings identified significant barriers to health services for patients with TBI at different points in the care continuum. Gaps in health services and barriers to care transcend geographical boundaries within the state. We suggest ways to improve access to TBI care including: 1) decentralisation of trauma centers; 2) development of neurobehavioural and age-appropriate long-term care facilities; 3) increased workforce with expertise in TBI treatment; and 4) improved access to transportation services for patients with a TBI.