An electronic, unsupervised patient-reported Expanded Disability Status Scale for multiple sclerosis.

BACKGROUND: In persons with multiple sclerosis (MS), the Expanded Disability Status Scale (EDSS) is the criterion standard for assessing disability, but its in-person nature constrains patient participation in research and clinical assessments. OBJECTIVE: The aim of this study was to develop and validate a scalable, electronic, unsupervised patient-reported EDSS (ePR-EDSS) that would capture MS-related disability across the spectrum of severity. METHODS: We enrolled 136 adult MS patients, split into a preliminary testing Cohort 1 (n = 50), and a validation Cohort 2 (n = 86), which was evenly distributed across EDSS groups. Each patient completed an ePR-EDSS either immediately before or after a MS clinician's Neurostatus EDSS evaluation. RESULTS: In Cohort 2, mean age was 50.6 years (range = 26-80) and median EDSS was 3.5 (interquartile range (IQR) = [1.5, 5.5]). The ePR-EDSS and EDSS agreed within 1-point for 86% of examinations; kappa for agreement within 1-point was 0.85 (p < 0.001). The correlation coefficient between the two measures was 0.91 (<0.001). DISCUSSION: The ePR-EDSS was highly correlated with EDSS, with good agreement even at lower EDSS levels. For clinical care, the ePR-EDSS could enable the longitudinal monitoring of a patient's disability. For research, it provides a valid and rapid measure across the entire spectrum of disability and permits broader participation with fewer in-person assessments.

The migraine signature study: Methods and baseline results.

OBJECTIVE: To characterize patients who utilize services for migraine in a large integrated health care network, and describe patterns of care and utilization. BACKGROUND: Within health care systems, migraine is a common reason for seeking primary and neurology care, but relatively little is documented about who seeks care and the factors that explain variation in utilization. METHODS: We conducted a retrospective cohort study using electronic health record (EHR) data from Sutter Health primary care (PC) patients who had at least one office visit to a PC clinic between 2013 and 2017. Migraine status was ascertained from diagnosis codes and medication orders. Control status was assigned to those with no evidence of care for any type of headache. We divided the primary care migraine cohort into two groups: those who received all their care for migraine from PC (denoted PC-M) and those who had ≥1 encounter with a neurologist for migraine (denoted N-M). Migraine cases were also designated as having preexisting migraine if they had an encounter with a migraine diagnosis within (±) 6 months of their first study period PC visit and, otherwise, designated as first migraine consult. Two levels of contrasts included: patients with migraine and controls; and within the group of patients with migraine, PC-M and N-M groups. Comorbid conditions were determined from EHR encounter diagnosis codes. RESULTS: We identified 94,149 patients with migraine (including 21,525 N-M and 72,624 PC-M) and 1,248,763 controls. Comorbidities: Proportions of psychiatric [29.8% (n = 28,054) vs. 11.8% (n = 147,043)], autoimmune [(4.4% (n = 4162) vs. 2.6% (n = 31,981)], pain [13.2% (n = 12,439) vs. 5.8% (n = 72,049)], respiratory [24.6% (n = 23,186) vs. 12.3% (n = 153,692)], neurologic [2.9% (n = 2688) vs. 0.9% (n = 11,321)], and cerebrovascular [1.0% (n = 945) vs. 0.6% (n = 7500)] conditions were higher in the migraine group compared to controls, all p < 0.001. Among patients with migraine, the N-M group was similar to the PC-M group in sex, age, ethnicity, and marital status, but were more likely to have preexisting migraine (49.9% (n = 10,734) vs. 36.2% (n = 26,317), p < 0.001). Proportions of comorbid conditions were higher among the N-M group than the PC-M group {psychiatric [38.5% (n = 8291) vs. 27.2% (n = 19,763)], autoimmune [6.3% (n = 1365) vs. 3.9% (n = 2797)], pain [19.6% (n = 4218) vs. 11.3% (n = 8211)], respiratory [30.3% (n = 6516) vs. 23.0% (n = 16,670)], neurologic [6.0% (n = 1288) vs. 1.9% (n = 1400)], cardiovascular [9.7% (n = 2091) vs. 7.0% (n = 5076)], and cerebrovascular [2.3% (n = 500) vs. 0.6% (n = 445)], all p < 0.001}. Medications: During the study period, 82.6% (n = 77,762) of patients with migraine received ≥1 prescription order for an acute migraine medication [89.4% (n = 19,250) of N-M vs. 80.6% (n = 58,512) of PC]. Opioids were prescribed to 52.9% (n = 49,837) of patients with migraine [63.5% (n = 13,669) for N-M and 49.8% (n = 36,168) for PC-M patients). During the study period, 61.4% (n = 57,810) of patients received ≥1 prescription for a migraine preventive medication [81.4% (n = 17,521) of N-M and 55.5% (n = 40,289) of PC-M patients]. The most commonly prescribed classes of preventive medications were antidepressants. CONCLUSIONS: Among patients with migraine in a large health system, those who were also cared for in neurology were more likely to receive both acute and preventive medication migraine orders than those patients who did not see a neurologist, with triptans and antidepressants the most commonly prescribed classes of acute and preventive pharmacotherapies, respectively. Opioids were prescribed to approximately half of the total sample and more common in the N-M group. Adjusting for demographics, patients with migraine had higher rates of nearly every comorbidity we assessed and were more likely to utilize services compared to those without migraine. Overall, patients with migraine also cared for in neurology practices used more of all health care resource types under consideration and had more medical issues, which may be due in some part to a more severe, frequent and disabling disease state compared to those who sought care exclusively from PC practices.

Using the PARAFAC2 tensor factorization on EHR audit data to understand PCP desktop work.

BACKGROUND: Activity or audit log data are required for EHR privacy and security management but may also be useful for understanding desktop workflow. OBJECTIVE: We determined if the EHR audit log file, a rich source of complex time-stamped data on desktop activities, could be processed to derive primary care provider (PCP) level workflow measures. METHODS: We analyzed audit log data on 876 PCPs across 17,455 ambulatory care encounters that generated 578,394 time-stamped records. Each individual record represents a user interaction (e.g., point and click) that reflects all or part of a specific activity (e.g., order entry access). No dictionary exists to define how to combine clusters of sequential audit log records to represent identifiable PCP tasks. We determined if PARAFAC2 tensor factorization could: (1) learn to identify audit log record clusters that specifically represent defined PCP tasks; and (2) identify variation in how tasks are completed without the need for ground-truth labels. To interpret the result, we used the following PARAFAC2 factors: a matrix representing the task definitions and a matrix containing the frequency measure of each task for each encounter. RESULTS: PARAFAC2 automatically identified 4 clusters of audit log records that represent 4 common clinical encounter tasks: (1) medications' access, (2) notes' access, (3) order entry access, and (4) diagnosis modification. PARAFAC2 also identified the most common variants in how PCPs accomplish these tasks. It discovered variation in how the notes' access task was done, including identification of 9 distinct variants of notes access that explained 77% of the input data variation for notes. The discovered variants mapped to two known workflows for notes' access and to two distinct PCP user groups who accessed notes by either using the Visit Navigator or the Wrap-Up option. CONCLUSIONS: Our results demonstrate that EHR audit log data can be rapidly processed to create higher-level constructed features that represent time-stamped PCP tasks.

Personality and Risk Taking in Sports: A Focus on Unintentional and Intentional Head Impacts in Amateur Soccer Players.

OBJECTIVE: In soccer, unintentional and intentional (heading) head impacts are associated with concussive symptoms and cognitive dysfunction. We examined whether personality traits were associated with these behaviors in soccer players. DESIGN: Cross-sectional study. SETTING AND PARTICIPANTS: Participants completed study visits at the Albert Einstein College of Medicine. A total of 307 adult amateur soccer players, recruited from New York City and the surrounding area, completed 737 HeadCount-2w questionnaires. PREDICTOR VARIABLES: Personality traits (intellect/imagination, conscientiousness, extraversion, agreeableness, and neuroticism) were assessed with the Mini-International Personality Item Pool questionnaire at the baseline study visit. MAIN OUTCOME MEASURES: Participants completed an online questionnaire (HeadCount-2w) to ascertain frequency of intentional head impacts and occurrence of unintentional head impacts every 3 to 6 months. Generalized estimating equations repeated-measures regressions determined whether personality predicted unintentional and intentional impacts. RESULTS: Personality traits were not associated with unintentional head impact(s) or frequency of intentional head impacts. CONCLUSIONS: These findings have important clinical implications, suggesting that personality is not driving the association between high levels of unintentional and intentional head impacts and worse neuropsychological functioning and concussive symptoms.

Predicting need for advanced illness or palliative care in a primary care population using electronic health record data.

Timely outreach to individuals in an advanced stage of illness offers opportunities to exercise decision control over health care. Predictive models built using Electronic health record (EHR) data are being explored as a way to anticipate such need with enough lead time for patient engagement. Prior studies have focused on hospitalized patients, who typically have more data available for predicting care needs. It is unclear if prediction driven outreach is feasible in the primary care setting. In this study, we apply predictive modeling to the primary care population of a large, regional health system and systematically examine the impact of technical choices, such as requiring a minimum number of health care encounters (data density requirements) and aggregating diagnosis codes using Clinical Classifications Software (CCS) groupings to reduce dimensionality, on model performance in terms of discrimination and positive predictive value. We assembled a cohort of 349,667 primary care patients between 65 and 90 years of age who sought care from Sutter Health between July 1, 2011 and June 30, 2014, of whom 2.1% died during the study period. EHR data comprising demographics, encounters, orders, and diagnoses for each patient from a 12 month observation window prior to the point when a prediction is made were extracted. L1 regularized logistic regression and gradient boosted tree models were fit to training data and tuned by cross validation. Model performance in predicting one year mortality was assessed using held-out test patients. Our experiments systematically varied three factors: model type, diagnosis coding, and data density requirements. We found substantial, consistent benefit from using gradient boosting vs logistic regression (mean AUROC over all other technical choices of 84.8% vs 80.7% respectively). There was no benefit from aggregation of ICD codes into CCS code groups (mean AUROC over all other technical choices of 82.9% vs 82.6% respectively). Likewise increasing data density requirements did not affect discrimination (mean AUROC over other technical choices ranged from 82.5% to 83%). We also examine model performance as a function of lead time, which is the interval between death and when a prediction was made. In subgroup analysis by lead time, mean AUROC over all other choices ranged from 87.9% for patients who died within 0 to 3 months to 83.6% for those who died 9 to 12 months after prediction time.

MRI-defined White Matter Microstructural Alteration Associated with Soccer Heading Is More Extensive in Women than Men.

Purpose To examine the role of sex in abnormal white matter microstructure after soccer heading as identified by using the diffusion-tensor imaging (DTI) metric fractional anisotropy (FA). Materials and Methods In this prospective cross-sectional study, 98 individuals who were enrolled in a larger prospective study of amateur soccer players (from 2013 to 2016) were matched 1:1 for age and history of soccer heading in the prior 12 months. Among the subjects, 49 men (mean age, 25.7 years; range, 18-50 years) and 49 women (mean age, 25.8 years; range, 18-50 years) with median total soccer headings per year of 487 and 469, respectively, underwent 3.0-T DTI. Images were registered to the Johns Hopkins University template. A voxelwise linear regression was fitted for FA with terms for the number of headings during the previous 12 months and its interaction with sex after controlling for the following potential confounders: age, years of education, number of lifetime concussions, and handedness. In the resulting statistical maps, P < .01 indicated a statistically significant difference, with a threshold cluster size larger than 100 mm3. Results Among men, three regions were identified in which greater heading exposure was associated with lower FA; eight such regions were identified among women (>100 contiguous voxels, P < .01). In seven of the eight regions identified in women, the association between heading and FA was stronger in women than in men. There was no significant difference of heading with FA between the sexes for any region in which heading was associated with FA among men (P > .01, <100 contiguous voxels). Conclusion With similar exposure to heading, women exhibit more widespread evidence of microstructural white matter alteration than do men, suggesting preliminary support for a biologic divergence of brain response to repetitive trauma. © RSNA, 2018 Online supplemental material is available for this article.

Recent and Long-Term Soccer Heading Exposure Is Differentially Associated With Neuropsychological Function in Amateur Players.

OBJECTIVES: The present study examined the relative contribution of recent or long-term heading to neuropsychological function in amateur adult soccer players. PARTICIPANTS AND METHODS: Soccer players completed a baseline questionnaire (HeadCount-12m) to ascertain heading during the prior 12 months (long-term heading, LTH) and an online questionnaire (HeadCount-2w) every 3 months to ascertain heading during the prior 2 weeks (recent heading, RH). Cogstate, a battery of six neuropsychological tests, was administered to assess neuropsychological function. Generalized estimating equations were used to test if LTH or RH was associated with neuropsychological function while accounting for the role of recognized concussion. RESULTS: A total of 311 soccer players completed 630 HeadCount-2w. Participants had an average age of 26 years. Participants headed the ball a median of 611 times/year (mean=1,384.03) and 9.50 times/2 weeks (mean=34.17). High levels of RH were significantly associated with reduced performance on a task of psychomotor speed (p=.02), while high levels of LTH were significantly associated with poorer performance on tasks of verbal learning (p=.03) and verbal memory (p=.04). Significantly better attention (p=.02) was detectable at moderately high levels of RH, but not at the highest level of RH. One hundred and seven (34.4%) participants reported a lifetime history of concussion, but this was not related to neuropsychological function and did not modify the association of RH or LTH with neuropsychological function. CONCLUSION: High levels of both RH and LTH were associated with poorer neuropsychological function, but on different domains. The clinical manifestations following repetitive exposure to heading could change with chronicity of exposure. (JINS, 2018, 24, 147-155).

Improving Medical Communication in Migraine Management: A Modified Delphi Study to Develop a Digital Migraine Tracker.

OBJECTIVE: This study aimed to identify the essential content and amount of information to be collected from people with migraine via a patient-facing smartphone-based migraine tracker for them to share with clinicians during live discussions to assist in optimizing migraine management. The proposed tracker is intended for use in non-interventional research to evaluate disease burden in episodic migraine and chronic migraine patients as assessed by demographic and clinical characteristics and health resource utilization in an integrated delivery network setting. The proposed tracker is not intended for commercial purposes. BACKGROUND: Epidemiological studies suggest migraine is underdiagnosed and undertreated. Studies of patient-clinician interactions suggest that effective medical communication may help address these issues. METHODS: Four migraine practice leaders, an epidemiologist with extensive migraine experience, and a measurement expert took part in a modified Delphi panel process to identify data elements that could be collected from people with migraine through a smartphone-based migraine tracker. Importantly, the proposed tracker would not be intended to replace the patient-clinician encounter but to support the encounter through enabling the patient to document migraine symptoms and experiences in a timely and accurate manner for sharing with a clinician as part of a broader face-to-face discussion. The panel reviewed questions derived from the existing migraine diaries in the public domain, those used in clinical trials, and patient-centric surveys assessing the impact of migraine on physical function and other related concepts. Key considerations included identification of the most clinically useful data elements for a shared communication tool for people with migraine under the care of a clinician. The panel also identified numerous functionality requirements for such a tool and provided recommendations on the most effective way to present results to a clinician. RESULTS: The expert panel opined that people with migraine may value the ability to capture a relatively broad range of information for their own migraine-tracking purposes, while clinicians will likely find greater value in a small set of data relevant to the management of migraine. The panel identified the 3 most essential concepts in categories of data for a clinician, for which they coined the term "The 3 Fs": Frequency of days with headache; Frequency of acute medication usage; and Functional impairment. Information on the frequency of days with headache was felt to combine with the information on the frequency of acute medication usage to provide essential insights into current migraine management strategy and its outcomes, and to assist considerations of preventive measures. Functional impairment was treated as an effective surrogate for headache severity and was assessed based on the following: degree of difficulty in performing activities of daily living, impact on absenteeism (taking leave from work or cancelling/avoiding other activities) and presenteeism (performing work or other daily activities, with reduced productivity/capability), and amount of rest required as a result of a migraine attack. The modified Delphi panel process resulted in the selection of 13 questions in 8 categories to elicit sufficient and meaningful data comprising headache occurrence, symptoms, daily/preventive and as-needed/acute medication usage, triggers, ability to concentrate, and functional impairment. The panel also agreed that the tracker should generate 2 distinct reports: one for people with migraine that would include a wider range of data about symptoms and perceived triggers, and a targeted report for the clinician that would place prime emphasis on the 3 Fs for aggregating the results of each headache occurrence and the trend over time. CONCLUSIONS: A system that easily captures critical data elements about migraine, with specific feedback displays for patients to share with clinicians during live discussions, may offer some benefit to people with migraine and their clinicians by facilitating more objective communication and optimizing management. The tracker's output may enable people with migraine to track a wide range of data for their own purposes, allowing them to better understand their condition, while a synthesized view of the selected data may support more informed clinical decision-making for the clinician and individualized, evidence-based discussion with the patient. As a result, this shared decision-making tool may enable patients to more accurately convey essential migraine information during live patient-clinician discussions to drive improved management and patient outcomes.

Translation, cross-cultural adaptation and reliability of the German version of the migraine disability assessment (MIDAS) questionnaire.

BACKGROUND: The Migraine Disability Assessment (MIDAS) is a brief questionnaire and measures headache-related disability. This study aimed to translate and cross-culturally adapt the original English version of the MIDAS to German and to test its reliability. METHODS: The standardized translation process followed international guidelines. The pre-final version was tested for clarity and comprehensibility by 34 headache sufferers. Test-retest reliability of the final version was quantified by 36 headache patients completing the MIDAS twice with an interval of 48 h. Reliability was determined by intraclass correlation coefficients and internal consistency by Cronbach's α. RESULTS: All steps of the translation process were followed, documented and approved by the developer of the MIDAS. The expert committee discussed in detail the complex phrasing of the questions that refer to one to another, especially exclusion of headache-days from one item to the next. The German version contains more active verb sentences and prefers the perfect to the imperfect tense. The MIDAS scales intraclass correlation coefficients ranged from 0.884 to 0.994 and was 0.991 (95% CI: 0.982-0.995) for the MIDAS total score. Cronbach's α for the MIDAS as a whole was 0.69 at test and 0.67 at retest. CONCLUSIONS: The translation process was challenged by the comprehensibility of the questionnaire. The German version of the MIDAS is a highly reliable instrument for assessing headache related disability with moderate internal consistency. Provided validity testing of the German MIDAS is successful, it can be recommended for use in clinical practice as well as in research.

Does transition of urinary incontinence from one subtype to another represent progression of the disease?

INTRODUCTION AND HYPOTHESIS: Mixed urinary incontinence (UI) is, on average, more severe than urgency UI or stress UI. We tested the hypothesis that mixed UI is a more advanced stage of UI by comparing transition probabilities among women with stress, urgency, and mixed UI. METHODS: We used data from the General Longitudinal Overactive Bladder Evaluation Study-UI, which included community-dwelling women, aged 40+ years, with UI at baseline. Study participants completed two or more consecutive bladder health surveys every 6 months for up to 4 years. Using sequential 6-month surveys, transition probabilities among UI subtypes were estimated using the Cox-proportional hazards model, with the expectation that probabilities from stress or urgency UI to mixed UI would be substantially greater than probabilities in the reverse direction. RESULTS: Among 6,993 women 40+ years of age at baseline, the number (prevalence) of women with stress, urgency, and mixed UI was 481 (6.9%), 557 (8.0%), and 1488 (21.3%) respectively. Over a 4-year period, the transition probabilities from stress UI (34%) and urgency UI (27%) to mixed UI was significantly higher than probabilities from mixed to stress UI (6%) or to urgency UI (rate = 9%). The adjusted transition hazard ratio for stress UI and urgency UI was 2.06 (95% CI: 1.73-2.92) and 1.85 (95% CI: 1.63-2.57) respectively compared with mixed UI. CONCLUSION: The substantially higher transition from stress UI and urgency UI to mixed UI supports the hypothesis that mixed UI might represent a more advanced stage of UI that may have implications for understanding disease progression.

Heading and unintentional head impacts have opposing associations with Patient Reported Outcomes in amateur soccer players.

The effects of soccer-related head impacts, beyond overt concussions, on Patient Reported Outcomes (PROs) have not been explored to date. Generalized estimating equations were employed to determine the association between soccer-related head impacts (headers in the prior 2 weeks, unintentional head impacts in the prior 2 weeks, headers in the prior 12 months and lifetime concussions) on PROs including depression, anxiety, sleep disturbance and sleep impairment. Compared to players with no unintentional head impacts in the prior 2 weeks, players with one unintentional exposure reported more symptoms of anxiety (p = 0.002) and players with 2+ exposures reported more symptoms of depression (p = 0.006) and anxiety (p < 0.001). In contrast, players in the 3rd Quartile of 12 mo. headers reported less anxiety (p = 0.001), sleep disturbance (p = 0.002) and sleep impairment (p < 0.001) compared to those in the 1st quartile. Unintentional head impacts are associated with worse PROs while more headers are paradoxically associated with better PROs.

Clinical epidemiological insights into urinary incontinence.

INTRODUCTION AND HYPOTHESIS: Urinary incontinence (UI) is very common and heterogeneous among women with limited knowledge of progression or prognosis. Evidence based on clinical epidemiology can help to better understand the natural history of UI. METHODS: We examine the challenges of UI definition and its subtypes, its impact on quality of life and health-seeking behavior. We review the proposed pathophysiology of UI subtypes and known risk factors as they relate to our current knowledge of the disease state. Finally, we emphasize the role of epidemiology in the process of acquiring new insight, improving knowledge, and translating this information into clinical practice. RESULTS: Stress UI is most common overall, but mixed UI is most prevalent in older women. The three UI subtypes have some common risk factors, and others that are unique, but there remains a significant gap in our understanding of how they develop. Although the pathophysiology of stress UI is somewhat understood, urgency UI remains mostly idiopathic, whereas mixed UI is the least studied and most complex subtype. Moreover, there exists limited information on the progression of symptoms over time, and disproportionate UI health-seeking behavior. We identify areas of exploration (e.g., epigenetics, urinary microbiome), and offer new insights into a better understanding of the relationship among the UI subtypes and to develop an integrated construct of UI natural history. CONCLUSION: Future epidemiological strategies using longitudinal study designs could play a pivotal role in better elucidating the controversies in UI natural history and the pathophysiology of its subtypes leading to improved clinical care.

Using Electronic Health Records for Population Health Research: A Review of Methods and Applications.

The use and functionality of electronic health records (EHRs) have increased rapidly in the past decade. Although the primary purpose of EHRs is clinical, researchers have used them to conduct epidemiologic investigations, ranging from cross-sectional studies within a given hospital to longitudinal studies on geographically distributed patients. Herein, we describe EHRs, examine their use in population health research, and compare them with traditional epidemiologic methods. We describe diverse research applications that benefit from the large sample sizes and generalizable patient populations afforded by EHRs. These have included reevaluation of prior findings, a range of diseases and subgroups, environmental and social epidemiology, stigmatized conditions, predictive modeling, and evaluation of natural experiments. Although studies using primary data collection methods may have more reliable data and better population retention, EHR-based studies are less expensive and require less time to complete. Future EHR epidemiology with enhanced collection of social/behavior measures, linkage with vital records, and integration of emerging technologies such as personal sensing could improve clinical care and population health.

Mixed Incontinence Masked as Stress Induced Urgency Urinary Incontinence.

PURPOSE: We sought to understand variations in the expression and temporal relation of bladder control episodes among women with mixed urinary incontinence. MATERIALS AND METHODS: A random sample of women 40 years old or older with mixed urinary incontinence on GLOBE-UI (General Longitudinal Overactive Bladder Evaluation-Urinary Incontinence) was recruited in a digital daily diary study using a smartphone application. When a bladder control event occurred, women were instructed to answer episode specific questions. Episodes were defined as urgency, and urinary incontinence with and urinary incontinence without urgency. Women and episodes were compared by the type of activity preceding each episode. Urinary incontinence episodes were further defined as stress urinary incontinence, urgency urinary incontinence, stress induced urgency urinary incontinence and other. The chi-square and Wilcoxon tests were used for categorical and continuous variables, respectively. RESULTS: Of 40 women with a mean age of 65.5 years 35 provided complete 30-day diary data. Of the 950 bladder control episodes reported 25% were urgency only, 55% were urinary incontinence with urgency and 19% were urinary incontinence without urgency. Of the urinary incontinence episodes without urgency 82% occurred after a stress activity (eg coughing or sneezing). Notably, a stress activity also occurred just before 52.5% of the urgency urinary incontinence episodes (p <0.001). A total of 24 women (69%) reported at least 1 episode of stress induced urgency urinary incontinence, which was the most prevalent urinary incontinence subtype episode, followed by urgency urinary incontinence and stress urinary incontinence (29% vs 27% and 16%, respectively). The mean number of daily episodes was 1 or 2 across all groups. CONCLUSIONS: Women with mixed urinary incontinence express a heterogeneous set of bladder control episodes with stress induced urgency urinary incontinence as the dominant type.

Clinical validation of the Bladder Health Survey for urinary incontinence in a population sample of women.

INTRODUCTION AND HYPOTHESIS: Our aim was to clinically validate the Bladder Health Survey (BHS) for detecting urinary incontinence (UI) in population-based surveys. METHODS: A random sample of women ≥40 years was recruited from primary care practices. We assessed the BHS content validity with an expert advisory board. Test-retest reliability of UI questions was measured. BHS UI definitions included noncases, active (more than three symptoms in the prior 6 months), inactive (past but no current symptoms), and incident (new onset over the past 2 years) cases. To assess criterion validity, we compared BHS diagnosis to an expert clinical diagnosis using structured history, pelvic exam, voiding diary, and urodynamics (if needed). Construct validity was assessed comparing the BHS UI score and case status to Sandvik's score. RESULTS: Among 322 patients, the BHS identified 17 % as noncases, 70 % as active, 10 % as inactive, and 3 % as incident cases. Using the clinical diagnosis as the gold standard, the percent of true-positive UI cases was 98 % (active), 84 % (inactive), and 80 % (incident). A total of 75 % of BHS noncases were true negatives. The receiver operating characteristic c-statistic was 0.86. Sensitivity and specificity of the BHS were 91 % and 84 %, respectively. The Sandvik score for active cases (median = 4) was significantly greater than it was for inactive (median = 1), incident (median = 1), and noncases (median = 0) (p < 0.001). The BHS UI score was significantly correlated with the Sandvik severity score (r = 0.68, p < 0.01). CONCLUSION: The BHS is highly reliable, with robust content and construct validity for detecting UI for use in population samples.

The interaction of stress and urgency urinary incontinence and its effect on quality of life.

INTRODUCTION AND HYPOTHESIS: The objective was to estimate the impact of stress and urgency urinary incontinence (UI) on the quality of life (QOL), and to determine whether the impact varies according to UI severity. METHODS: We used data from the General Longitudinal Overactive Bladder Evaluation-UI study in women. Stress and urgency UI symptom severity scores ranged from 0 to 8. We used logistic regression to test the relation among different severity levels of stress and urgency UI, and their interaction with the Incontinence Impact Questionnaire (IIQ-7). This was categorized according to percentage ranges as 0-40% (reference), 41-80%, and 81-100%. RESULTS: Both stress and urgency UI were significantly associated with IIQ-7. Higher scores had higher odds ratios (ORs). The OR for urgency vs stress UI was greater at the same severity level. For instance, comparing IIQ-7 quintiles (0-40% vs 41-80%), the OR for an association with an urgency UI score of 5-6 was 5.27 (95% CI = 3.78-7.33) vs 2.76 (95% CI = 2.07-3.68) for a stress UI score of 5-6. Both UI subtypes were more strongly related to the upper (81-100%) than the to the lower (41-80%) quintiles. There was a strong positive urgency UI and stress UI interaction with the upper (i.e., 81-100%) but not the two next lower (41-80%) quintiles. CONCLUSION: The impact of UI subtypes on QOL varies according to the score of IIQ-7, stress and urgency UI, and their interaction. Urgency vs stress UI has a stronger impact. The effect is greatest for high IIQ-7 scores with a significant share mediated by the interaction of the two UI subtypes.

The wired patient: patterns of electronic patient portal use among patients with cardiac disease or diabetes.

BACKGROUND: As providers develop an electronic health record-based infrastructure, patients are increasingly using Web portals to access their health information and participate electronically in the health care process. Little is known about how such portals are actually used. OBJECTIVE: In this paper, our goal was to describe the types and patterns of portal users in an integrated delivery system. METHODS: We analyzed 12 months of data from Web server log files on 2282 patients using a Web-based portal to their electronic health record (EHR). We obtained data for patients with cardiovascular disease and/or diabetes who had a Geisinger Clinic primary care provider and were registered "MyGeisinger" Web portal users. Hierarchical cluster analysis was applied to longitudinal data to profile users based on their frequency, intensity, and consistency of use. User types were characterized by basic demographic data from the EHR. RESULTS: We identified eight distinct portal user groups. The two largest groups (41.98%, 948/2258 and 24.84%, 561/2258) logged into the portal infrequently but had markedly different levels of engagement with their medical record. Other distinct groups were characterized by tracking biometric measures (10.54%, 238/2258), sending electronic messages to their provider (9.25%, 209/2258), preparing for an office visit (5.98%, 135/2258), and tracking laboratory results (4.16%, 94/2258). CONCLUSIONS: There are naturally occurring groups of EHR Web portal users within a population of adult primary care patients with chronic conditions. More than half of the patient cohort exhibited distinct patterns of portal use linked to key features. These patterns of portal access and interaction provide insight into opportunities for electronic patient engagement strategies.

Effect of Financial Incentives to Physicians, Patients, or Both on Lipid Levels: A Randomized Clinical Trial.

IMPORTANCE: Financial incentives to physicians or patients are increasingly used, but their effectiveness is not well established. OBJECTIVE: To determine whether physician financial incentives, patient incentives, or shared physician and patient incentives are more effective than control in reducing levels of low-density lipoprotein cholesterol (LDL-C) among patients with high cardiovascular risk. DESIGN, SETTING, AND PARTICIPANTS: Four-group, multicenter, cluster randomized clinical trial with a 12-month intervention conducted from 2011 to 2014 in 3 primary care practices in the northeastern United States. Three hundred forty eligible primary care physicians (PCPs) were enrolled from a pool of 421. Of 25,627 potentially eligible patients of those PCPs, 1503 enrolled. Patients aged 18 to 80 years were eligible if they had a 10-year Framingham Risk Score (FRS) of 20% or greater, had coronary artery disease equivalents with LDL-C levels of 120 mg/dL or greater, or had an FRS of 10% to 20% with LDL-C levels of 140 mg/dL or greater. Investigators were blinded to study group, but participants were not. INTERVENTIONS: Primary care physicians were randomly assigned to control, physician incentives, patient incentives, or shared physician-patient incentives. Physicians in the physician incentives group were eligible to receive up to $1024 per enrolled patient meeting LDL-C goals. Patients in the patient incentives group were eligible for the same amount, distributed through daily lotteries tied to medication adherence. Physicians and patients in the shared incentives group shared these incentives. Physicians and patients in the control group received no incentives tied to outcomes, but all patient participants received up to $355 each for trial participation. MAIN OUTCOMES AND MEASURES: Change in LDL-C level at 12 months. RESULTS: Patients in the shared physician-patient incentives group achieved a mean reduction in LDL-C of 33.6 mg/dL (95% CI, 30.1-37.1; baseline, 160.1 mg/dL; 12 months, 126.4 mg/dL); those in physician incentives achieved a mean reduction of 27.9 mg/dL (95% CI, 24.9-31.0; baseline, 159.9 mg/dL; 12 months, 132.0 mg/dL); those in patient incentives achieved a mean reduction of 25.1 mg/dL (95% CI, 21.6-28.5; baseline, 160.6 mg/dL; 12 months, 135.5 mg/dL); and those in the control group achieved a mean reduction of 25.1 mg/dL (95% CI, 21.7-28.5; baseline, 161.5 mg/dL; 12 months, 136.4 mg/dL; P < .001 for comparison of all 4 groups). Only patients in the shared physician-patient incentives group achieved reductions in LDL-C levels statistically different from those in the control group (8.5 mg/dL; 95% CI, 3.8-13.3; P = .002). CONCLUSIONS AND RELEVANCE: In primary care practices, shared financial incentives for physicians and patients, but not incentives to physicians or patients alone, resulted in a statistically significant difference in reduction of LDL-C levels at 12 months. This reduction was modest, however, and further information is needed to understand whether this approach represents good value. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT01346189.

Burden of migraine related to menses: results from the AMPP study.

BACKGROUND: Studies of the difference between menstrually associated and non-menstrually associated migraine are somewhat controversial. The majority of studies have focused on comparing menstrual to non-menstrual attacks rather than comparing study groups with different migraine diagnoses with respect to menstruation. As there is limited knowledge available on the overall impact and burden of migraine among groups of women with and without menstrually associated migraine our goal was to examine differences between these groups. We hypothesized that there would be greater burden of migraine related to menstruation and headache frequency in a population study across groups of women. METHODS: We analyzed data from the American Migraine Prevalence and Prevention (AMPP) Study, a longitudinal, US, population-based study. We included female respondents to the 2009 survey, aged 18 to 60, who met modified ICHD-2 criteria for migraine, were actively menstruating and fit one of three definitions based on the self-reported association of menses and migraine attacks: self-reported predominantly menstrual migraine (MM, attacks that only or predominantly occur at the time of menses), self-reported menstrually-associated migraine (MAM, attacks commonly associated with menses, but that also occur at other times of the month), and self-reported menstrually-unrelated migraine (MUM). These three groups were compared on characteristics and measures of headache impact and burden (Headache Impact Test- 6 item (HIT-6) and Migraine Disability Assessment Scale (MIDAS). RESULTS: There were 1,697 eligible subjects for this study in the following categories: MM (5.5%), MAM (53.8%), or MUM (40.7%). Women with MM had an older age of migraine onset. Those with predominantly menstrually-related attacks (MM) had fewer headache-days but appeared to be more impaired by attacks. HIT-6 and MIDAS scores were significantly higher for both the MM and MAM groups compared with the MUM groups; however, effects were more robust for MM than MAM. CONCLUSIONS: Nearly 60% of women with migraine reported an association between migraine and menses. These women reported greater headache impact and migraine-related burden on functioning than those in whom migraines were not related to menstruation. Women with MM were more impaired by attacks while women with MAM had overall highest burden, likely due to experiencing migraines on additional days.

Urinary incontinence incidence: quantitative meta-analysis of factors that explain variation.

PURPOSE: We sought to explain variation in female age specific incidence rates for urinary incontinence using published, population based studies. MATERIALS AND METHODS: We performed an extensive MEDLINE® review of published, population based studies of the female urinary incontinence incidence rate from 1966 to 2011 using a combination of symptom and epidemiological search terms. A total of 18 reports described 17 unique incidence studies. We abstracted the features of each study (eg sample size, followup, etc) along with detailed data on 109 age specific incidence rates (ie new cases per 1,000 person-years). Because the Nurses' Health Study had unique demographics and was dominant in sample size, analyses were completed with and without this study. Weighted (ie square root of sample size) linear regression was used to determine factors (ie age, source population, race, frequency score, etc) explaining variance among age specific incidence rates. RESULTS: Age and case definition accounted for 60% of the variation in incidence rates among studies. The age specific incidence was less than 2/1,000 person-years before age 40 years and it increased thereafter. For a given age group incidence rates varied as much as sixfold across studies, a finding that was largely explained by variation in case definition. CONCLUSIONS: The case definition accounts for substantial variation in urinary incontinence incidence estimates. Developing standards for reporting would provide a foundation for policy guidance and understanding etiology. We recommend that quantitative frequency criteria (eg 2 times or more per month) be reported vs vague thresholds (eg sometimes or often).