Education on the consequences of traumatic brain injury for children and adolescents with TBI and families/caregivers: a systematic scoping review.

OBJECTIVE(S): To examine the breadth of education or training on the consequences of traumatic brain injury (TBI) for children and adolescents with TBI and their families/caregivers. METHODS: Systematic scoping review of literature published through July 2018 using eight databases and education, training, instruction, and pediatric search terms. Only studies including pediatric participants (age <18) with TBI or their families/caregivers were included. Six independent reviewers worked in pairs to review abstracts and full-text articles independently, and abstracted data using a REDCap database. RESULTS: Forty-two unique studies were included in the review. Based on TBI injury severity, 24 studies included persons with mild TBI (mTBI) and 18 studies focused on moderate/severe TBI. Six studies targeted the education or training provided to children or adolescents with TBI. TBI education was provided primarily in the emergency department or outpatient/community setting. Most studies described TBI education as the main topic of the study or intervention. Educational topics varied, such as managing TBI-related symptoms and behaviors, when to seek care, family issues, and returning to work, school, or play. CONCLUSIONS: The results of this scoping review may guide future research and intervention development to promote the recovery of children and adolescents with TBI.

Effect of Missed Items on the Reliability of the Kessler Foundation Neglect Assessment Process.

OBJECTIVE: To determine the maximum permissible number of missed items on the 10-item Catherine Bergego Scale administered after the Kessler Foundation Neglect Assessment Process (KF-NAP). Secondary objectives were to determine the frequency, characteristics, and most commonly cited reasons reported for missed items. DESIGN: Retrospective diagnostic accuracy study. SETTING: Sixteen inpatient rehabilitation facilities in the United States. PARTICIPANTS: A consecutive clinical sample of 4256 patients (N=4256) with stroke or other neurologic deficits who were assessed for spatial neglect with the KF-NAP. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Catherine Bergego Scale via KF-NAP. RESULTS: The majority (69.7%) of patients had at least 1 missed item on their KF-NAP. Among those with missed items, it was most common to have 2 missed items (51.4%), and few had more than 3 missed items (11.3%). The most commonly missed items were Collisions (37.2%), Cleaning After Meals (36.1%), Meals (34.0%), and Navigation (19.7%). The most commonly reported reasons for missed items included time constraints, cognitive or communication deficits, and behavior or refusal of the therapy session. These reasons were reported for nearly all item types. Item-specific reasons were also commonly reported, such as a lack of a needed resource for task completion or low functional status of the patient. Prorated scoring of measures with up to 3 missed items maintained an acceptable level of concordance with complete measures (Lin's Concordance Correlation Coefficient=0.96, 95% CI, 0.9478-0.9626) for the combination of 3 missed items with lowest concordance. CONCLUSIONS: Clinicians should make every effort to capture all items on the KF-NAP. However, missed items occur in the majority of cases because of patient factors and barriers inherent to the inpatient hospital setting. When missed items are necessary, clinicians can confidently interpret a prorated score when 7 or more items are scored.

Development of a physical function outcome measure to harmonize comparisons between three Asian adult populations.

PURPOSE: The purpose of this study was to use modern measurement techniques and create a precise functional status metric for Asian adults. METHODS: The study subjects included Asian American adults from the 2012 Health and Retirement Study (n = 211), Chinese adults in the China Health and Retirement Longitudinal Study (n = 13,649), and Korean adults in the Korean Longitudinal Study of Aging (n = 7,486). The Rasch common-item equating method with nine self-care and mobility items from the three databases were used to create a physical function measure across the three Asian adult populations. RESULTS: The created physical function measure included 23 self-care and mobility tasks and demonstrated acceptable psychometric properties (unidimensional, local independence, no misfit, no differential item functioning). A significant group difference in the estimated physical function across the three Asian adult populations ([Formula: see text] = 445.21, p < 0.0001) was identified. The American Asian adults (5.16 logits) had better physical function compared to the Chinese (4.15 logits) and Korean adults (3.32 logits). CONCLUSION: Since the outcome measure was calibrated with the population-representative Asian samples, this derived physical function measure can be used for cross-national comparisons between the three countries. Using this precise functional status metric can help to identify factors that influence health outcomes in other Asian countries (China and Korea). This has the potential to generate numerous benefits, such as international disability monitoring and health-related policy development, improved shared decision making, and international syntheses of research findings.

Association between vision impairment and cognitive decline in older adults with stroke: Health and Retirement Study.

Stroke survivors may experience multiple residual symptoms post-stroke, including vision impairment (VI) and cognitive decline. Prior studies have shown that VI is associated with cognitive decline, but have not evaluated the contribution of VI to post-stroke cognitive changes. We used data from four waves (2010-2016) of the Health and Retirement Study to investigate the cognitive trajectories of stroke survivors with and without VI. Vision (excellent-very good[ref], good, fair-poor) and stroke diagnosis were self-reported. Cognition was defined using the Telephone Interview for Cognitive Status. Regression was used to model the association between vision and change in cognitive function, adjusting for confounders. The final sample included 1,439 stroke survivors and the average follow-up time was 4.1 years. Fair-poor overall (B = -1.30, p < 0.01), near (B = -1.53, p < 0.001), and distance (B = -1.27, p < 0.001) vision were associated with significantly lower baseline cognitive function. VI was not associated with the rate of cognitive decline. Future research should determine whether specific types of VI potentiate the risk of cognitive impairment and dementia in stroke survivors.

Use of the ICD-10 vision codes to study ocular conditions in Medicare beneficiaries with stroke.

BACKGROUND: Ocular conditions are common following stroke and frequently occur in combination with pre-existing ophthalmologic disease. The Medicare International Statistical Classification of Diseases and Related Health Problems (ICD-10) coding system for identifying vision related health conditions provides a much higher level of detail for coding these complex scenarios than the previous ICD-9 system. While this new coding system has advantages for clinical care and billing, the degree to which providers and researchers are utilizing the expanded code structure is unknown. The purpose of this study was to describe the use of ICD-10 vision codes in a large cohort of stroke survivors. METHODS: Retrospective cohort design to study national 100% Medicare claims files from 2015 through 2017. Descriptive data analyses were conducted using all available ICD-10 vision codes for beneficiaries who had an acute care stay because of a new stroke. The outcome of interest was ≥1 ICD-10 visual code recorded in the claims chart. RESULTS: The cohort (n = 269,314) was mostly female (57.1%) with ischemic stroke (87.8%). Approximately 15% were coded as having one or more ocular condition. Unspecified glaucoma was the most frequently used code among men (2.83%), those over 85+ (4.80%) and black beneficiaries (4.12%). Multiple vision codes were used in few patients (0.6%). Less than 3% of those in the oldest group (85+ years) had two or more vision codes in their claims. CONCLUSIONS: Ocular comorbidity was present in a portion of this cohort of stroke survivors, however the vision codes used to describe impairments in this population were few and lacked specificity. Future studies should compare ophthalmic examination results with billing codes to characterize the type and frequency of ocular comorbidity. It important to understand how the use of ICD-10 vision codes impacts clinical decision making, recovery, and outcomes.

Swallowing Status Comparison between Primary Dysphagia and Post-stroke Dysphagia in Inpatient Rehabilitation Facilities.

Objectives: To examine the improvement of discharge swallowing status between patients with a primary dysphagia diagnosis and those with Post-stroke dysphagia discharged from inpatient rehabilitation facilities (IRFs). Methods: A retrospective cohort design used data from the United States Uniform Data System for Medical Rehabilitation (UDSMR) during 2016 and 2017. Ordinal logistic regression model compared the swallowing status at discharge between the two comparison groups, accounting for baseline patient and clinical characteristics. Multiple imputations with the fully conditional specification method was used to deal with the missing observations for the discharge swallowing status variable. Results: The mean age of the sample was 71.4 years (SD = 12.8). A total of 992 patients were retrieved from the study data, including 64 patients with a primary dysphagia diagnosis and 928 patients with Post-stroke dysphagia. Adjusted ordinal logistic regression model revealed that patients with primary dysphagia had lower odds of improving their swallowing status (odds ratio [OR] 0.300: 95% Confidence Interval [CI] 0.142, 0.636) than those with Post-stroke dysphagia at discharge from IRFs. Similarly, the multiple imputations method revealed that patients with primary dysphagia had lower odds of swallowing status improvement at discharge from IRFs (OR 0.563: 95% CI 0.342, 0.925). Discussion: Patients with a primary dysphagia diagnosis receiving rehabilitation services in IRFs demonstrated substantially worse swallowing status compared to those with Post-stroke dysphagia in a large national sample. This finding suggests that healthcare providers should be aware of the differences occurring in swallowing improvement across dysphagia diagnosis groups.

Dysphagia Associated with Risk of Depressive Symptoms among Stroke Survivors after Discharge from a Cluster of Inpatient Rehabilitation Facilities.

OBJECTIVES: To examine the association of stroke-induced dysphagia during an inpatient rehabilitation facility (IRF) stay and depressive symptoms at a 3-month follow-up. METHODS: A retrospective cross-sectional design using the Stroke Recovery in Underserved Populations 2005-2006 study database. Hierarchical logistic regression models were utilized to examine if stroke-induced dysphagia is a significant predictor for depressive symptoms at 3-month follow-up across the stepwise introduction of the demographics and clinical characteristics at the IRF discharge and 3-month follow-up. Multiple imputations with Markov-chain Monte Carlo method was used to address the covariates with missing observations. RESULTS: In a total of 1,045 stroke survivors, 335 (32.1%) stroke survivors had dysphagia and 710 (67.9%) stroke survivors did not have dysphagia during the IRF stay. The adjusted logistic regression model and multiple imputation method revealed that stroke survivors with dysphagia are more likely to have depressive symptoms at 3-month follow-up (Odds ratio [OR] 3.169, 95% confidence interval [CI] 1.379-7.283; OR 1.746, 95% CI 1.153-2.642, respectively). A high level of functional and cognitive status, functional support, and community participation at the 3-month follow-up was inversely associated with depressive symptoms (OR 0.973, 95% CI 0.951- 0.995; OR 0.884, 95% CI 0.829-0.942; OR 0.793, 95% CI 0.714-0.882). DISCUSSION: Stroke survivors experiencing dysphagia during the IRF stay had a higher risk of developing depressive symptoms compared to those without dysphagia at 3-month follow-up. Healthcare providers should pay attention to dysphagia care in IRFs which might prevent the development of depressive symptoms when the stroke survivors are discharged and back in their communities.

Relationship Between Fear of Falling and Physical Activity in People Aging With a Disability.

BACKGROUND: An estimated one billion people worldwide live with some form of disability and may face many challenges as they age, including increased fall risk. Understanding the risk factors linking falls, fear of falling, and activity restriction is critical for developing effective programs to increase activity levels among persons with disabilities. OBJECTIVES: To determine if differences exist in the level of physical activity in people with different types of conditions associated with disability and to investigate if fear of falling is associated with physical activity in individuals who are aging with a long-term disability. DESIGN: Cross-sectional retrospective design. SETTING: Community. PARTICIPANTS: A convenience sample of 1812 community-dwelling individuals who had one of four diagnoses: multiple sclerosis (MS), muscular dystrophy (MD), spinal cord injury (SCI), or post-polio syndrome (PPS). METHODS: Descriptive statistics, chi-square, and analysis of variance, followed by multivariate linear regression analysis were used to examine the association between physical activity status and fear of falling. MAIN OUTCOME MEASUREMENTS: Physical activity volume and fear of falling. RESULTS: After controlling for age, sex, duration of disability, and mobility level, there was variation across diagnostic groups (P < .001). People with SCI reported greater physical activity (M = 25.19) compared to other groups (MS: M = 18.70; MD: M = 21.83; PPS: M = 15.47). Patients with PPS had the greatest concerns about falling (M = 16.08), and patients with MS had the lowest (M = 13.12). Fear of falling was associated with physical activity (P < .001), which remained significant after controlling for diagnosis type, falls history, and level of mobility. CONCLUSION: Level of physical activity appears to vary among disability diagnoses. These results highlight the importance of addressing fear of falling in people with long-term disability because fear of falling is associated with physical activity.

Identification of targets for improving access to care in persons with long term physical disabilities.

BACKGROUND: People with long-term physical disability (LTPD) continue to experience difficulties in accessing health care despite the focus of highlighting disparities in the last two decades. OBJECTIVES: To describe health care utilization, accommodations and barriers experienced while accessing health care, and reasons why individuals delay or skip health care among people with LTPD. METHODS: The current study was a part of a larger longitudinal survey administered to individuals with physical disability associated with one of four long-term conditions (MS; SCI; PPS; MD). Measures included demographics, health care utilization, barriers to health care, and reasons for delaying or skipping medical care from the sixth wave of data from 2015 to 2016. RESULTS: Roughly 90% of all participants (N = 1159) saw at least one medical provider within 12 months. The most encountered barrier participants reported experiencing within that time was an office that did not have a safe transfer device to move them to an exam table (69%). Participants' physical function, quality of life, status of living with a spouse, diagnostic condition, and sex (male) were significantly associated with endorsing a barrier in accessing health care. The inability to afford out of pocket expenses was the highest reported reason for delaying health care. CONCLUSIONS: People with LTPD access a variety of health care, including rehabilitation services, and continue to experience barriers when doing so. While understanding barriers individuals experience when accessing health care is important, it is equally important to document the type of care they delay or skip due to barriers.

Impact of secondary health conditions on social role participation for a long-term physical disability cohort.

For people living with long-term physical disability (LTPD) social participation may involve managing physical impairments and secondary health conditions (SHCs) that are not due to the pathophysiology of the LTPD diagnosis itself. Prior research found a negative relationship between SHCs and participation in social roles in people with spinal cord injury (SCI). We expand on this research by investigating the influence of SHCs on participation in social roles for people with one of four LTPDs, controlling for co-variates. We (1) evaluated the associations between SHCs and participation in social roles; and (2) determined whether SHCs on individuals' ability to participate in social roles varies by type of diagnosis in those aging with either SCI, muscular sclerosis, muscular dystrophy, or post-polio syndrome. Cross-sectional, secondary data analysis from a return-by-mail survey. N = 1,573. Data were analyzed with multiple linear regressions (hypothesis 1), and then three moderated regressions (hypothesis 2). After controlling for demographics, SHCs were associated with lower ability to participate in social roles and accounted for 48% of the variance (all p's <.001). The relationship between depression and social role participation was moderated by diagnosis, such that depression was more negatively associated with social participation among individuals with SCI (p = .020). Thus, SHC negatively impact participation in social roles.