Disclosures I have no relevant financial information to disclose.

Disclosures

• I have no relevant financial information to disclose

Disparities in Health Care Utilization: Background

• Health care utilization expected to be high among people with muscular dystrophy

• African Americans with muscular dystrophy have a life expectancy 10 to 12 years shorter than Whites with muscular dystrophy

• Questionable adequacy of Medicaid for coverage of the multidisciplinary approach needed for management of muscular dystrophy

Kenneson et al. Widening gap in age at muscular-dystrophy associated death between Blacks and Whites. Neurology. 2010;75:982-989Mejia et al. Dying young: eliminating racial disparities in neuromuscular disease outcomes. Neurology. 2010;75:948-949

Disparities in Health Care Utilization: Objective

• Use South Carolina Medicaid and other administrative data to determine annual health care utilization patterns for people with muscular dystrophy by race

Disparities in Health Care Utilization : Methods

Inclusion criteria• In South Carolina Medicaid records– 2000 to 2010– Persons age 15-24 – Muscular dystrophy (ICD-9 code 359.0 and 359.1)

Exclusion criteria• Myotonic dystrophy because diagnosed older

than study population


Measures• Counts of health care utilization– Total and specific health encounters• Inpatient, Primary Care, ER, Therapy, Specialist, Surgery,

Developmental Rehabilitation/Intellectual Disability, Home Health/Community Long-Term Care

– Encounters not necessarily related to muscular dystrophy

• Race : Black, White, Other• Age group: Teenagers (15-18 yrs) and Young

Adult (19-24 yrs)


Measures• Entry into 12th grade (yes/no)• Supplemental Nutrition Assistance Program

(food stamps) (yes/no)• Urban county (yes if county of residence was

“mostly urban”)


Analysis• T-tests to compare differences in mean total

encounters by category between Black-White, Black-Other and Other-White

• Generalized estimating equation models to assess comparisons by encounter type– Adjusts for repeated observations from same individual

during the study period– Independent variables in model

• SNAP receipt, 12th grade enrollment, urban county• Interested in transition period, so entered interaction of race

with teenager/young adult

Disparities in Health Care Utilization : Results

• 1011 people with muscular dystrophy• Average age 19• 81% live in urban counties• 51% White, 35% Black, 14% Other


Age 15-18All encounters, annual avg• Blacks 24.28, Whites 72.36

Specialists, annual avg• Blacks 1.22, Whites 1.79

Developmental Rehab, annual avg• Blacks 4.13, Whites 10.96

Home Health/CLTC, annual avg• Blacks 1.90, Whites 40.39


Age 19-24All encounters, annual avg• Blacks 34.05, Whites 99.52

Emergency Room• Blacks 0.99, Whites 0.56

Specialists• Blacks 2.83, Whites 1.29

Therapy• Blacks 0.04, Whites 1.02

Home Health/CLTC• Blacks 12.56, Whites 76.54


After adjusting for socioeconomic variables:• Black teens 63% less likely to use care as White

teens• 56% less likely to use Developmental

Rehabilitation• 94% less likely to use Home Health/CLTC

• Black young adults 2x more likely to use ER, 3x more likely to have inpatient encounter

Disparities in Health Care Utilization : Conclusions

• Racial disparities in health care utilization exist among teens and young adults with muscular dystrophy with the same health care benefits

• Utilization disparities widen during transition from pediatric to adult care

• What could contribute to disparities?• Resource awareness• Health knowledge• Other access barriers (transportation)• Cultural preferences

Variations in TBI Outcomes: Background

• TBI is a leading cause of acquired disability• Rehabilitation can lead to improved functional

outcomes• Many children hospitalized for TBI need

further care after discharge• Regional variations in management of other

pediatric conditions

Variations in TBI Outcomes: Objective

• To determine if there was significant state-to-state variation in discharge disposition and outcomes among children hospitalized with TBI in the United States

Variations in TBI Outcomes: Methods

• Retrospective cohort study• Data source – Healthcare Cost and Utilization

Project (HCUP) State Inpatient Database (SID)– Four years of data: 2001 (13 states), 2004 (18

states), 2007 (16 states), 2010 (19 states)– All patients ≤ 19 years old hospitalized with TBI• ICD-9 codes defined as TBI by the CDC, with the

exception of excluding diagnostic codes limited to scalp injury


• Exclusion criteria:– ICD-9 codes referring to scalp injury only– Missing age (18 patients) or insurance status (241

patients)– Discharged to another acute care hospital to avoid

double count


Variables• State – 4 states excluded because no data on inpatient

rehabilitation• Discharge disposition

– Home, SNF, Inpatient Rehabilitation, Psych Facility– Death/Hospice– Another Acute Care Hospital

• Age (0-4, 5-9, 10-14, 15-19 years old)• Insurance status (Government, Private, Uninsured)• Injury severity

– Abbreviated Injury Scale score (minor, moderate, serious, severe, critical, unsurvivable)


• Primary outcome of interest: Discharge to inpatient rehabilitation among those discharged alive

• [Secondary outcome of interest: Inpatient mortality] – will not discuss because of time


Analysis• Multivariable Poisson regression with robust

standard error estimates, clustered by hospital• Relative risk of being discharged to inpatient

rehabilitation• Estimate number of children who could have

been discharged to rehab if all states had same “risk” of rehab as referent state

Variations in TBI Outcomes: ResultsCharacteristic N=71,476 %

Discharge Disposition

Home 64,799 90.7

Skilled Nursing 1,324 1.9

Inpatient Rehab 2,658 3.7

Psychiatric 72 0.1

Hospice 18 0.03

Died 2,605 3.6

Variations in TBI Outcomes: Results

Adjusted for age, injury severity, insurance status. *p<.05


Children without insurance were 68% less likely to receive inpatient rehabilitation. Uninsured children 32% more likely to die during hospitalization.


Estimate of additional children that could be discharged to rehab annually if all states performed at highest observed level• Among states in this dataset: 728

children• Extrapolated to United States

population: 1981 children

Variations in TBI Outcomes: Conclusions

There is significant variation between states in discharge to inpatient rehabilitation after pediatric TBI

What could drive these differences?

Variations in TBI Outcomes: Clinical Correlations

What could drive these differences?• Is rehab consulted similarly between states?• Variation in presence of pediatric subacute

facilities• Differences in availability of appropriate

outpatient rehabilitation• Practice-dependent factors about candidacy

On-line Problem Solving in TBI: Background

• Neurocognitive and behavioral problems are common after TBI

• Executive dysfunction affects activity and participation in the home, school and community

• Barriers to accessing treatment (geography, transportation, etc.) contribute to unmet need

On-line Problem Solving in TBI: Background

• Counselor-Assisted Problem-Solving (CAPS) randomized controlled trial, n=132– At first assessment after this intervention, CAPS

associated with improved externalizing behavior and parent ratings of executive function compared to internet resources

– CAPS designed to prevent emergence of new problems, so expect to see greater benefit with time

See initial outcomes for CAPS in Kurowski et al. Online problem-solving therapy for executive dysfunction after child traumatic brain injury. Pediatrics. 2013;132(1):e158 -e166

On-line Problem Solving in TBI: Objective

• Extend earlier CAPS work and determine if improvements are maintained at 12 month follow-up

• Investigate if advantage of CAPS increases with time and as adolescents age

On-line Problem Solving in TBI: Methods

• Enrollment March 2007-January 2011 – 3 tertiary pediatric hospitals, 2 tertiary general

medical centers– Cincinnati, Cleveland, Denver, Rochester

• Inclusion criteria– 12 to 17 years of age – Complicated mild to severe TBI. – 1 to 6 months after initial injury


• Exclusion criteria– Non-blunt trauma– Primary language other than English– History of significant intellectual disability before injury– History of child abuse– Insufficient recovery to allow participation in the study– History of parental or child psychiatric hospitalization within

1 year before enrollment– Family residence in an area without high-speed Internet

access– Child residence outside the home (eg, detention facility)– Resided >3 hours from the study site.


• Multisite, evaluator-blinded RCT• Randomization stratified by sex and race

(White/non-White) to CAPS or Internet resource condition (IRC) group

• All families provided with new computer, web camera, high-speed internet subscription

• All families taught how to log on to the website, access online TBI resources


CAPS Intervention• 6 months, counselor-assisted, web-based, family-centered• Initial face-to-face session in the family’s home, psychologist evaluation

and technological instruction (CAPS web site and Skype for videoconference sessions)

• Sessions weekly then biweekly; 6 sessions over 3 months – Self-guided didactic content regarding problems-solving skills, video clips

modeling these skills, and exercises to practice the skills. – During videoconference sessions, therapist reviewed the online materials

and practiced problem-solving skills using problems that the family identified.

• 7th online session, parent-reported measure of family burden and a self-assessment of problem solving and communication.

• Based on results of the self-assessment, therapist planned individualized sessions over remaining months of CAPS– Up to four supplemental sessions provided to address additional

unresolved issues.


Internet Resource Condition, control arm• Receive a home page with links to online TBI

resources• Families asked to spend 1 or more hours

online per week accessing TBI information throughout the 6 month period

• No access to CAPS content


Assessments• Baseline, 6 months (immediately after end of

intervention), 12 months, 18 months• Occurred in participants’ homes• Background questionnaire– Injury severity– Combined estimate of SES • Mean z-scores for family income using median income

of census tract• Primary caregiver educational level


Assessments• Behavior Rating Inventory of Executive

Function – completed by primary caregiver– Global Executive Composite of the BRIEF is

primary outcome measure– Behavioral Regulation Index, secondary outcome– Metacognition Index, secondary outcome– Higher score = greater dysfunction


Intention to Treat Analysis• Chi square and two-sided unpaired t-tests to

compare demographic variables• Mixed-model analysis to evaluate group

differences in executive function– Dependent variable: Global Executive Composite– Independent variables: interaction term of age at

injury (younger 12-14 v. older 14-17) by treatment group (CAPS v. IRC) by time since baseline• Significance of this interaction term to evaluate whether

groups differed in rate of change over time

On-line Problem Solving in TBI: Results

• No significant difference in demographic variables (~65% male, ~80% White, ~4 months since injury)

• Mean number of sessions completed in CAPS group: 7.23 (SD 2.99, range 0-13)

• Parent- and self-reported time spent viewing information on the internet did not differ between CAPS and IRC


Among older adolescents (14-17 yrs), CAPS group had lower GEC ratings at 12 and 18 months, trend toward lower GEC at 6 months


Primary variable of interest (interaction term for Group x TSB x Age), trending toward significance


Interaction term (group x TSB x age) trending toward significance for secondary outcomes of BRI, MI

On-line Problem Solving in TBI: Take Home Message

• Older (age 14-17) adolescents have sustained benefit in executive function from problem-solving intervention

• Is CAPS ready for dissemination?– How can the rest of us use CAPS?

• Unequal access risk of increasing disparities– What about families who don’t have access to high

speed internet, computers? (They may be at greater risk of poor outcomes to begin with.)

– Can CAPS be adapted for different cultural groups?

Strict Rest in Concussion: Background

• Animal models show early physical and mental activity can impair recovery after mTBI

• Rest after concussion to reduce re-injury• Consensus recommendations of 24 – 48 hours

of rest followed by stepwise return to activity• No studies of optimal rest period after acute

concussion

Strict Rest in Concussion: Objective

• Investigate the effectiveness of 5 days of strict rest versus 24 – 48 hours of rest after discharge from the ED with acute concussion.– Hypothesis: 5 days of rest would have improved

mean neurocognitive, balance and symptom outcomes

Strict Rest in Concussion: Methods

• RCT of patients presenting to Children’s Hospital of Wisconsin Emergency Department and Trauma Center between May 2010 – December 2012

• Screen for eligibility if chief complaint in ED was head injury with a mechanism of injury having sufficient force to cause mTBI


Inclusion criteria• Age 11 to 22 years old• Present to ED within 24 hours of head injury• Diagnosed with mild TBI/concussion based on

the Acute Concussion Evaluation form (available at http://www.cdc.gov/headsup/pdfs/providers/ace_ed-a.pdf)


Exclusion criteria• Non-English speaking• No legal guardian, or guardian unable to give consent in English• Intellectual disability (IQ<70)• Previous diagnosis of ADD/ADHD, learning disability• Intracranial bleeding or contusion (imaging at discretion of

treating clinician)• Admitted to hospital• Conditions that could interfere with valid assessment of

signs/symptoms, neurocognitive or balance tests• Treating clinician uncomfortable with study procedure• Lived > 1 hour from Medical College of Wisconsin


Interventions• Strict rest (intervention)– Instructions for 5 days of strict rest

• No school, work or physical activity• School and work excusal letters provided

– After 5 days, stepwise return to activity if symptoms resolved

• Usual care (control)– Attending physician recommend activity restrictions as they

see fit– Survey of physicians at that ED found most instruct rest for

1-2 days, followed by return to school, and if symptoms resolved, stepwise return to activity


Interventions• Both groups received the CDC’s Acute

Concussion Evaluation – Care Plan (available at http://www.cdc.gov/headsup/providers/discharge-materials.html)

• All encouraged to follow-up with PCP or Concussion Clinic

• Research assistants observed discharge instructions provided to each patient

http://www.cdc.gov/headsup/providers/discharge-materials.html

http://www.cdc.gov/headsup/providers/discharge-materials.html


Measures• ImPACT (day 0, 3 & 10) and paper neuropsych

battery (day 3 & 10)• Balance Error Scoring System (firm day 0,

firm/foam day 3 & 10)• Post-Concussive Symptoms Scale (day 1-10)– Scored 0 (symptom not present) to 6 (severe) for

19 symptoms


Measures• Energy expenditure: Activity Diaries – Record physical and mental activity in 15 min

intervals (3-day diary) and 1hr intervals (7-day diary)

– Reported activity level to estimate energy expenditure

Strict Rest in Concussion: Analysis

• All analyses were intention to treat• T-tests (normally distributed data) or Wilcoxon

rank sum test (not normally distributed data) for – Change in ImPACT & BESS, day 0 to day 3 & 10• Bonferroni multiple comparison adjustment p<.025

– Total number of symptoms reported– Symptoms reported in first 5 days

Strict Rest in Concussion: Analysis

Linear mixed-model analyses to determine if• Treatment group impacted outcomes• Treatment groups differed in recovery

trajectory– Accounts for correlations over time given multiple

observations on same subject.

Proportional Hazard Model for time to symptom resolution (PCSS ≤ 7)

Strict Rest in Concussion: Results

Demographics• Strict rest group slightly older (14.7 years versus

13.1 years, p<.01)• Similar proportion of girls (33% in strict rest, 36%

in usual care)• No other differences – in mechanism of injury– signs/symptoms present in ED– ED evaluation or treatment– Risk factors for prolonged recovery– Preinjury activity


• Nearly all participants had signs/symptoms at time of ED eval

• 36% of all participants reported LOC


• No differences in calculated energy expenditure


• Usual care group had more hours of mental activity per day on day 2-5 (8.33 hrs vs 4.86 hrs, p=.03)


• Strict rest group took 3 days longer for 50% of group to have symptom resolution, but p=0.08

• Over 60% of both groups had complete symptom resolution


Symptoms• Strict rest group had higher total PCSS score

over 10 days (187.9 vs 131.9, p<.03)• Strict rest group had higher daily mean PCSS

score– On day 4, strict rest group had mean PCSS 21.51 vs

13.95 in usual care group. P<.03

Objective assessments• No significant between group differences in

ImPACT or BESS scores at day 3 or 10.


Linear mixed-modeling• No significant effects over time based on group

for overall PCSS and neurocognitive measures• PCSS analyzed by domain (physical, emotional,

cognitive, sleep)– Strict rest group had higher (worse) physical

symptom scores– Strict rest group had trajectory of more emotional

symptoms during study period

Strict Rest in Concussion: Conclusions

• Strict rest after ED discharge did not improve symptom burden, neurocognitive or balance outcomes.

• Those on strict rest reported more symptoms over the 10 day study period.

• Recommendation for strict rest did not alter physical activity patterns but did reduce hours of mental activity

Disclosures I have no relevant financial information to disclose.

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