Motor ability, function, and health-related quality of life as correlates of symptom burden in patients with sclerotic chronic graft-versus-host disease receiving imatinib mesylate.

PURPOSE: To explore improvement in motor ability, function, health-related quality of life (HRQOL), and symptom severity in patients with sclerotic chronic graft-versus-host disease (ScGVHD) in response to treatment as well as the relationship among changes on such measures. METHODS: This study was a secondary analysis of data from 13 individuals with severe ScGVHD enrolled in a clinical trial evaluating the efficacy of imatinib mesylate (clinicaltrials.gov identifier: NCT00702689). Self-reported, clinician-reported, and performance-based indicators of motor ability, function, HRQOL, and symptom severity were assessed at baseline and 6 months following the administration of imatinib mesylate. RESULTS: Participants did not show statistically significant improvement on any measures over time. Approximately one-third of patients displayed clinically significant improvement on measures of motor ability (palmar pinch strength, dominant hand, 30.8%), functioning (Manual Ability Measure-36, 41.7%), HRQOL (Short Form 36 [SF-36] Mental Component Summary, 33.3%), and symptom severity (Lee Symptom Scale, 38.5%). Improvement in cGVHD symptom burden was correlated with improvement in function (Assessment of Motor and Process Skills [AMPS] and Disabilities of the Arm, Shoulder, and Hand [DASH] scores) and HRQOL (SF-36 Physical Component Summary scores). CONCLUSIONS: Findings suggest the potential utility of administering patient-reported and performance-based functional measures, such as the DASH and the AMPS, to patients with cGVHD. By understanding the functional consequences of ScGVHD, interdisciplinary teams of health care providers, including rehabilitation professionals, can work to improve long-term outcomes.

Broadening horizons: the case for capturing function and the role of health informatics in its use.

BACKGROUND: Human activity and the interaction between health conditions and activity is a critical part of understanding the overall function of individuals. The World Health Organization's International Classification of Functioning, Disability and Health (ICF) models function as all aspects of an individual's interaction with the world, including organismal concepts such as individual body structures, functions, and pathologies, as well as the outcomes of the individual's interaction with their environment, referred to as activity and participation. Function, particularly activity and participation outcomes, is an important indicator of health at both the level of an individual and the population level, as it is highly correlated with quality of life and a critical component of identifying resource needs. Since it reflects the cumulative impact of health conditions on individuals and is not disease specific, its use as a health indicator helps to address major barriers to holistic, patient-centered care that result from multiple, and often competing, disease specific interventions. While the need for better information on function has been widely endorsed, this has not translated into its routine incorporation into modern health systems. PURPOSE: We present the importance of capturing information on activity as a core component of modern health systems and identify specific steps and analytic methods that can be used to make it more available to utilize in improving patient care. We identify challenges in the use of activity and participation information, such as a lack of consistent documentation and diversity of data specificity and representation across providers, health systems, and national surveys. We describe how activity and participation information can be more effectively captured, and how health informatics methodologies, including natural language processing (NLP), can enable automatically locating, extracting, and organizing this information on a large scale, supporting standardization and utilization with minimal additional provider burden. We examine the analytic requirements and potential challenges of capturing this information with informatics, and describe how data-driven techniques can combine with common standards and documentation practices to make activity and participation information standardized and accessible for improving patient care. RECOMMENDATIONS: We recommend four specific actions to improve the capture and analysis of activity and participation information throughout the continuum of care: (1) make activity and participation annotation standards and datasets available to the broader research community; (2) define common research problems in automatically processing activity and participation information; (3) develop robust, machine-readable ontologies for function that describe the components of activity and participation information and their relationships; and (4) establish standards for how and when to document activity and participation status during clinical encounters. We further provide specific short-term goals to make significant progress in each of these areas within a reasonable time frame.

Psychosocial Characteristics of Women with a Delayed Diagnosis of Turner Syndrome.

OBJECTIVES: To characterize the psychosocial profiles of adult women diagnosed with Turner syndrome before (early diagnosis) and at or after (late diagnosis) 13 years of age. STUDY DESIGN: Women with Turner syndrome ages 22 and older at evaluation (n = 110) participated in a cross-sectional study at the National Institutes of Health. Researchers performed nonparametric and logistic regression analyses to assess early and late diagnosis cohorts on measures of depression, substance use, and perceptions of competence and identity. RESULTS: Of study participants, 47% received a Turner syndrome diagnosis at or after age 13 years. Median age at diagnosis was 12.0 years (range, 0-43). Covariate-adjusted models revealed that women with late diagnoses had an increased likelihood of developing mild to severe depressive symptoms (OR, 7.36) and a decreased likelihood of being perceived as competent (OR, 0.26). Women with a late diagnosis also exhibited more frequent substance use compared with women with early diagnoses. CONCLUSIONS: These data suggest that Turner syndrome diagnoses received at or after age 13 years may contribute to adverse outcomes related to depression, substance use, and perceptions of competence. Delayed Turner syndrome diagnoses may place women and girls at risk for negative psychosocial development extending into adulthood. These findings indicate it is important for pediatricians to evaluate psychosocial domains in girls with Turner syndrome regularly, particularly among those diagnosed at age 13 years or older. TRIAL REGISTRATION: ClinicalTrials.gov: NCT00006334.

First in line: prioritizing receipt of Social Security disability benefits based on likelihood of death during adjudication.

BACKGROUND: Given the complexity of the adjudication process and volume of applications to Social Security Administration's (SSA) disability programs, many individuals with serious medical conditions die while awaiting an application decision. Limitations of traditional survival methods called for a new empirical approach to identify conditions resulting in rapid mortality. OBJECTIVE: To identify health conditions associated with significantly higher mortality than a key reference group among applicants for SSA disability programs. RESEARCH DESIGN: We identified mortality patterns and generated a survival surface for a reference group using conditions already designated for expedited processing. We identified conditions associated with significantly higher mortality than the reference group and prioritized them by the expected likelihood of death during the adjudication process. SUBJECTS: Administrative records of 29 million Social Security disability applicants, who applied for benefits from 1996 to 2007, were analyzed. MEASURES: We computed survival spells from time of onset of disability to death, and from date of application to death. Survival data were organized by entry cohort. RESULTS: In our sample, we observed that approximately 42,000 applicants died before a decision was made on their disability claims. We identified 24 conditions with survival profiles comparable with the reference group. Applicants with these conditions were not likely to survive adjudication. CONCLUSIONS: Our approach facilitates ongoing revision of the conditions SSA designates for expedited awards and has applicability to other programs where survival profiles are a consideration.

Conceptualizing disability in US national surveys: application of the World Health Organization's (WHO) International Classification of Functioning, Disability, and Health (ICF) framework.

PURPOSE: Disability data inform resource allocation and utilization, characterize functioning and changes over time, and provide a mechanism to monitor progress toward promoting and protecting the rights of individuals with disability. Data collection efforts, however, define and measure disability in varied ways. Our objective was to see how the content of disability measures differed in five US national surveys and over time. METHODS: Using the WHO ICF as a conceptual framework for measuring disability, we assessed the National Health Interview Survey (NHIS), Current Population Survey (CPS), Survey of Income and Program Participation (SIPP), National Survey of SSI Children and Families (NSCF), and American Community Survey (ACS) for their content coverage of disability relative to each of the four ICF components (i.e., body functions, body structures, activities and participation, and environment). We used second-level ICF three-digit codes to classify question content into categories within each ICF component and computed the proportion of categories within each ICF component that was represented in the questions selected from these five surveys. RESULTS: The disability measures varied across surveys and years. The NHIS captured a greater proportion of the ICF body functions and body structures components than did other surveys. The SIPP captured the most content of the ICF activities and participation component, and the NSCF contained the most content of the ICF environmental factors component. CONCLUSIONS: This research successfully illustrated demonstrated the utility of the ICF in examining the content of disability measures in five national surveys and over time.

Associations between white matter integrity and postural control in adults with traumatic brain injury.

Abnormalities of postural sway have been extensively reported in traumatic brain injury (TBI). However, the underlying neural correlates of balance disturbances in TBI remain to be elucidated. Studies in children with TBI have reported associations between the Sensory Organization Test (SOT) and measures of white matter (WM) integrity with diffusion tensor imaging (DTI) in brain areas responsible for multisensory integration. This study seeks to replicate those associations in adults as well as explore relationships between DTI and the Limits of Stability (LOS) Test. Fifty-six participants (43±17 years old) with a history of TBI were tested 30 days to 5 years post-TBI. This study confirmed results in children for associations between the SOT and the medial lemniscus as well as middle cerebellar peduncle, and revealed additional associations with the posterior thalamic radiation. Additionally, this study found significant correlations between abnormal LOS scores and impaired WM integrity in the cingulum, corpus callosum, corticopontine and corticospinal tracts, fronto-occipital fasciculi, longitudinal fasciculi, medial lemniscus, optic tracts and thalamic radiations. Our findings indicate the involvement of a broad range of WM tracts in the control of posture, and demonstrate the impact of TBI on balance via disruptions to WM integrity.

Simple and economical HandClench Relaxometer device for reliable and sensitive measurement of grip myotonia in myotonic dystrophy.

Grip myotonia and weakness are attractive treatment response biomarkers in clinical trials of myotonic dystrophy type 1 (DM1). There is a need to develop simple, patient-friendly and reproducible methods of quantifying grip myotonia in multisite trial settings. We designed a HandClench Relaxometer (HCR) that measures grip myotonia and strength. In contrast with the existing quantitative myometry (QMA) setup, the HCR is portable, economical, can be used with any laptop and generates automated command prompts. We demonstrate the feasibility and reliability of HCR device in twenty DM1 individuals and ten age-matched controls; patients returned for follow up within two months. The device showed excellent day to day reproducibility (ICC >0.80) in patients. The HCR device detected myotonia in milder muscle disease and measured longer myotonia duration than QMA indicating enhanced sensitivity for quantifying myotonia in DM1. The reaction time to the relax but not squeeze command was delayed and showed warm up similar to myotonia in DM1. HCR outcomes were correlated with key pinch strength, hand dexterity test, and fat replacement in the MRI of the long finger flexor muscles. Use of the HCR is warranted for grip myotonia and strength measurements in longitudinal observational and interventional studies of DM1.

Linking Free Text Documentation of Functioning and Disability to the ICF With Natural Language Processing.

Background: Invaluable information on patient functioning and the complex interactions that define it is recorded in free text portions of the Electronic Health Record (EHR). Leveraging this information to improve clinical decision-making and conduct research requires natural language processing (NLP) technologies to identify and organize the information recorded in clinical documentation. Methods: We used natural language processing methods to analyze information about patient functioning recorded in two collections of clinical documents pertaining to claims for federal disability benefits from the U.S. Social Security Administration (SSA). We grounded our analysis in the International Classification of Functioning, Disability, and Health (ICF), and used the Activities and Participation domain of the ICF to classify information about functioning in three key areas: mobility, self-care, and domestic life. After annotating functional status information in our datasets through expert clinical review, we trained machine learning-based NLP models to automatically assign ICF categories to mentions of functional activity. Results: We found that rich and diverse information on patient functioning was documented in the free text records. Annotation of 289 documents for Mobility information yielded 2,455 mentions of Mobility activities and 3,176 specific actions corresponding to 13 ICF-based categories. Annotation of 329 documents for Self-Care and Domestic Life information yielded 3,990 activity mentions and 4,665 specific actions corresponding to 16 ICF-based categories. NLP systems for automated ICF coding achieved over 80% macro-averaged F-measure on both datasets, indicating strong performance across all ICF categories used. Conclusions: Natural language processing can help to navigate the tradeoff between flexible and expressive clinical documentation of functioning and standardizable data for comparability and learning. The ICF has practical limitations for classifying functional status information in clinical documentation but presents a valuable framework for organizing the information recorded in health records about patient functioning. This study advances the development of robust, ICF-based NLP technologies to analyze information on patient functioning and has significant implications for NLP-powered analysis of functional status information in disability benefits management, clinical care, and research.

A comprehensive study of mobility functioning information in clinical notes: Entity hierarchy, corpus annotation, and sequence labeling.

BACKGROUND: Secondary use of Electronic Health Records (EHRs) has mostly focused on health conditions (diseases and drugs). Function is an important health indicator in addition to morbidity and mortality. Nevertheless, function has been overlooked in accessing patients' health status. The World Health Organization (WHO)'s International Classification of Functioning, Disability and Health (ICF) is considered the international standard for describing and coding function and health states. We pioneer the first comprehensive analysis and identification of functioning concepts in the Mobility domain of the ICF. RESULTS: Using physical therapy notes at the National Institutes of Health's Clinical Center, we induced a hierarchical order of mobility-related entities including 5 entities types, 3 relations, 8 attributes, and 33 attribute values. Two domain experts manually curated a gold standard corpus of 14,281 nested entity mentions from 400 clinical notes. Inter-annotator agreement (IAA) of exact matching averaged 92.3 % F1-score on mention text spans, and 96.6 % Cohen's kappa on attributes assignments. A high-performance Ensemble machine learning model for named entity recognition (NER) was trained and evaluated using the gold standard corpus. Average F1-score on exact entity matching of our Ensemble method (84.90 %) outperformed popular NER methods: Conditional Random Field (80.4 %), Recurrent Neural Network (81.82 %), and Bidirectional Encoder Representations from Transformers (82.33 %). CONCLUSIONS: The results of this study show that mobility functioning information can be reliably captured from clinical notes once adequate resources are provided for sequence labeling methods. We expect that functioning concepts in other domains of the ICF can be identified in similar fashion.

Feasibility study of home care wound management using telemedicine.

OBJECTIVE: Evaluate the effectiveness of telemedicine (TM) with digital cameras in treating wounds in a home care setting. DESIGN: Randomized controlled study. PARTICIPANTS AND SETTING: One hundred three subjects with 160 pressure ulcers (PrUs) or nonhealing surgical wounds referred to a metropolitan Visiting Nurse Agency. INTERVENTIONS: Subjects were randomly assigned to 1 of 3 groups. Group A (n = 40): weekly visits with TM and wound care specialist (WCS) consults; group B (n = 28): weekly visits with weekly consults with WCSs; and group C (n = 35): usual and customary care. MAIN OUTCOME MEASURES: Outcome measures were time to heal, costs, length of stay (LOS), nursing visits, wound status, and change in size. RESULTS: There was a similar distribution of subject characteristics in all 3 groups, but group A had disproportionally larger and more numerous PrUs and larger nonhealing surgical wounds. Group A had increased time to heal, LOS, costs, and visits compared with groups B and C; wound status was similar in all groups. CONCLUSIONS: Uneven distribution of severity and type of wounds among groups, with greatest percentage of large wounds in TM group. Larger wounds consume more resources. TM is a useful communication tool in wound management but with limited power when randomization does not include wound size or type. Two important benchmarks were established for home care. First, it took 51 days, on average, to heal or improve PrUs and 34 days to heal or improve surgical wounds regardless of group. Second, nearly 90% of wounds improved or healed.

The SCI Exercise Self-Efficacy Scale (ESES): development and psychometric properties.

BACKGROUND: Rising prevalence of secondary conditions among persons with spinal cord injury (SCI) has focused recent attention to potential health promotion programs designed to reduce such adverse health conditions. A healthy lifestyle for people with SCI, including and specifically, the adoption of a vigorous exercise routine, has been shown to produce an array of health benefits, prompting many providers to recommend the implementation of such activity to those with SCI. Successfully adopting such an exercise regimen however, requires confidence in one's ability to engage in exercise or exercise self-efficacy. Exercise self-efficacy has not been assessed adequately for people with SCI due to a lack of validated and reliable scales, despite self efficacy's status as one of the most widely researched concepts and despite its broad application in health promotion studies. Exercise self efficacy supporting interventions for people with SCI are only meaningful if appropriate measurement tools exist. The objective of our study was to develop a psychometrically sound exercise self-efficacy self-report measure for people with SCI. METHODS: Based on literature reviews, expert comments and cognitive testing, 10 items were included and made up the 4-point Likert SCI Exercise Self-Efficacy Scale (ESES) in its current form. The ESES was administered as part of the first wave of a nationwide survey (n = 368) on exercise behavior and was also tested separately for validity in four groups of individuals with SCI. Reliability and validity testing was performed using SPSS 12.0. RESULTS: Cronbach's alpha was .9269 for the ESES. High internal consistency was confirmed in split-half (EQ Length Spearman Brown = .8836). Construct validity was determined using principal component factor analysis by correlating the aggregated ESES items with the Generalised Self Efficacy Scale (GSE). We found that all items loaded on one factor only and that there was a statistically significant correlation between Exercise Self-Efficacy Scale (ESES) and Generalised Self Efficacy Scale (GSE) (Spearman RHO = .316; p < .05; n = 53, 2-sided). CONCLUSION: Preliminary findings indicate that the ESES is a reliable instrument with high internal consistency and scale integrity. Content validity both in terms of face and construct validity is satisfactory.

Consumer evaluation of a disability care coordination organization.

Disability care coordination organizations (DCCOs) arrange comprehensive, disability-competent social and medical services for people with disabilities. This study used consumer ratings of access and quality to measure outcomes in one of the first operational DCCOs over a three-year period. Working-age Medicaid adults with physical disabilities reported statistically significant improvements in service coordination, patient education, system-wide disability competency, comprehensive assessment, health visit support, and self-direction of care. Global quality ratings showed statistically significant and sustained improvement over two years, with the percentage of people rating the health system as excellent rising from 7% before enrollment to 44% in the DCCO. The percentage of people rating primary care physicians as excellent rose from 18% before enrollment to 38% in the DCCO. Over time, enrollees became more knowledgeable about the need for preventive health care services, were more likely to receive needed care and medical equipment, and reduced their need for rehabilitation therapies. Disability care coordination organizations can reduce disparities and improve access to care for this vulnerable population.

Health and housing among low-income adults with physical disabilities.

The purpose of this study was to understand the impact of living environment on the health and access to health care of low-income working-age adults with physical disabilities. We conducted focus groups of participants with physical disabilities in the District of Columbia living in each of three housing situations (a homeless shelter, a nursing home, and an inaccessible house or apartment). Twenty-eight people participated in the focus groups. Most were male (79%) and African American (93%). Participants from a homeless shelter expressed concerns about accessibility and sanitation at the shelter. Nursing home participants expressed a need for privacy and autonomy that would foster consumer-directed care. Participants living in inaccessible apartments or houses worried about their ability to maintain daily living and social activities. Participants perceived barrier-free housing conditions to be a prerequisite for independent living and for ensuring their basic health and well-being.

Secondary conditions in spinal cord injury: results from a prospective survey.

STUDY DESIGN: Prospective, self-report mail survey with two points of measurement one year apart. OBJECTIVES: To determine significant predictors of pressure ulcers (PU) and urinary tract infections (UTI) in adults with spinal cord injury (SCI) over 2 years. SETTING: Non-institutionalized adults with SCI living in the United States of America. METHODS: Secondary data analysis from 2 consecutive years. Independent variables included demographic, healthcare-related, functional, access to care, and health behavior measures. Dependent variables were the occurrence of PU and UTI at Time 2. RESULTS: Bivariate analyses showed significant associations between various independent variables and the occurrence of PU and UTI at Time 2. Separate logistic regression analyses for PU and UTI at Time 2 as dependent variables showed that PU at Time 1, not being married or cohabiting, not having access to primary care services when needed, and reporting a greater number of activities of daily living (ADL) requiring assistance were significant predictors of PU at Time 2. UTI at Time 1, a greater number of ADLs requiring assistance, and not engaging in weekly exercise are significant predictors of subsequent occurrence of UTI. CONCLUSIONS: Findings support previous research, and indicate the need for increased efforts to provide SCI self-management education to at-risk subpopulations, including individuals with greater personal assistance needs and functional limitations.

Descriptive Analysis of Spinal Neuroaxial Injections, Surgical Interventions, and Physical Therapy Utilization for Degenerative Lumbar Spondylolisthesis Within Medicare Beneficiaries from 2000 to 2011.

STUDY DESIGN: A retrospective, observational study. OBJECTIVE: The aim of this study was to determine the utilization of various treatment modalities in the management of degenerative spondylolisthesis within Medicare beneficiaries. SUMMARY OF BACKGROUND DATA: Degenerative lumbar spondylolisthesis is a condition often identified in symptomatic low back pain. A variety of treatment algorithms including physical therapy and interventional techniques can be used to manage clinically significant degenerative spondylolisthesis. METHODS: This study utilized the 5% national sample of Medicare carrier claims from 2000 through 2011. A cohort of beneficiaries with a new International Classification of Diseases 9th edition (ICD-9) diagnosis code for degenerative lumbar spondylolisthesis was identified. Current procedural terminology codes were used to identify the number of procedures performed each year by specialty on this cohort. RESULTS: A total of 95,647 individuals were included in the analysis. Average age at the time of initial diagnosis was 72.8 ±â€Š9.8 years. Within this study cohort, spondylolisthesis was more prevalent in females (69%) than males and in Caucasians (88%) than other racial demographics. Over 50% of beneficiaries underwent at least one injection, approximately one-third (37%) participated in physical therapy, one in five (21%) underwent spinal surgery, and one-third (36%) did not utilize any of these interventions. Greater than half of all procedures (124,280/216,088) occurred within 2 years of diagnosis. The ratio of focal interventions (transforaminal and facet interventions) to less selective (interlaminar) procedures was greater for the specialty of Physical Medicine and Rehabilitation than for the specialties of Anesthesiology, Interventional Radiology, Neurosurgery, and Orthopedic Surgery. The majority of physical therapy was dedicated to passive treatment modalities and range of motion exercises rather than active strengthening modalities within this cohort. CONCLUSION: Interventional techniques and physical therapy are frequently used treatment modalities for symptomatic degenerative spondylolisthesis. Understanding utilization of these techniques is important to determine relative clinical efficacies and to optimize future health care expenditures. LEVEL OF EVIDENCE: N/A.