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Neurology, Quality of Life, and Health Services

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Vineland Adaptive Behavior Scales., 2nd ed. (VINELAND-II)
#820601

Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me), short form
#820201

Wechsler Adult Intelligence Scale, 4th ed., (WAIS-IV)
#820501

Wechsler Preschool and Primary Scale of Intelligence, 4th ed. (WPPSI-IV)
#820502

Wechsler Intelligence Scale for Children, 5th ed., (WISC)
#820503

Bayley Scales of Infant and Toddler Development (BSID)
#820504

National Institutes of Health Stroke Scale (NIHSS)
#820801

Pediatric National Institutes of Health Stroke Scale (PedNIHSS)
#820802

The PedsQL Sickle Cell Disease Module
#820202

The Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me), Quality of Care Module
#820101

Consumer Assessment of Healthcare Providers and Systems (CAHPS), Health Plan Survey 4.0, Child Medicaid Questionnaire
#820102

Patient-Reported Outcomes Measurement Information System® (PROMIS) 29 Profile, v. 2.0 Adult Profile
#221302

Patient-Reported Outcomes Measurement Information System® (PROMIS) Item Bank, v.1.1, Pediatric Profile 25
#221301

The Recovery and Recurrence Questionnaire (RRQ)
#820702

The Sickle Cell Disease Self-Efficacy Scale (SCSES)
#820401

The Stroke Impact Scale (SIS)
#820701

Stoke Prevention in Sickle Cell Disease (STOP) Study, Transcranial Doppler (TCD) ultrasonography
#821001

Imaging Transcranial Doppler (TCDi) ultrasonography
#821002

The Conners Continuous Performance Test 3 (CPT 3™ )
#821201
Adolescent Pediatric Pain Tool (APPT)
Adolescent Pediatric Pain Tool (APPT)
Alcohol - 30-Day Quantity and Frequency
National Survey on Drug Use and Health (NSDUH), 2015 & National Institute on Alcohol Abuse and Alcoholism (NIAAA) National Epidemiologic Survey on Alcohol and Related Conditions, Wave 1 (NESARC - WAVE 1)/Alcohol Use Disorder and Associated Disabilities Interview Schedule-IV (AUDADIS-IV)
Executive Function
The Trail Making Test - Adult
Executive Function - Child
The Behavior Rating Inventory of Executive Function (BRIEF)
Health Quality Index for Economic Evaluations - Adult
EQ-5D-3L
Health Quality Index for Economic Evaluations - Child and Adolescent
EuroQol Group - EQ-5D-Y
History of Stroke - Ischemic Infarction and Hemorrhage
Jackson Heart Study (JHS)
Impairment - Adolescent
The Columbia Impairment Scale (CIS)
Impairment - Adult
The World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0)
Migraine - Adult
American Migraine Study II, Self-Administered Questionnaire for Migraine
Migraine - Children
The Pediatric Migraine Disability Assessment (PedMIDAS)
Motor and Attentional Impulsivity (Immediate and Delayed Memory Task)
Immediate and Delayed Memory Task (IMT/DMT)
Pain
Brief Pain Inventory©(BPI), Short Form
Physical, Social, and Mental Health Functioning (SF-36V2)
SF-36v2 Health Survey
Quality of Life Enjoyment and Satisfaction - Adult
Quality of Life Enjoyment and Satisfaction Questionnaire - Short Form (Q-LES-Q-SF)
Quality of Life Enjoyment and Satisfaction - Children
Pediatric Quality of Life Enjoyment and Satisfaction Questionnaire (PQ-LES-Q)
Screening and Severity of Substance Use Problems - Adolescents
Treatment Improvement Protocol (TIP) Services, Simple Screening Instrument for Alcohol and Other Drugs (SSI-AOD)
Screening and Severity of Substance Use Problems - Adults - Alcohol - Lifetime
Brief Michigan Alcoholism Screening Test (Brief MAST)
Screening and Severity of Substance Use Problems - Adults - Alcohol - Past 12 Months
Alcohol Use Disorders Identification Test (AUDIT)
Screening and Severity of Substance Use Problems - Adults - Drugs
Drug Abuse Screening Test (DAST-10)
Service Utilization and Cost
Global Appraisal of Individual Needs (GAIN)
Short Form-McGill Pain Questionnaire-2 (SF-MPQ-2)
Short-form McGill Pain Questionnaire (SF-MPQ-2)
Substances - 30-Day Frequency
National Survey on Drug Use and Health (NSDUH), 2015
Verbal Memory - Adult
Wechsler Memory Scale®, Logical Memory subtest, Fourth Edition (WMS®-IV)
Verbal Memory - Child
Children’s Memory Scale (CMS), Verbal Memory subscales
Visual Memory - Adult
Wechsler Memory Scale®, Visual Reproductions subtest, Fourth Edition (WMS®-IV)
Visual Memory - Child
Children’s Memory Scale® (CMS), Visual Memory subtest
Working Memory - Adult
Wechsler Adult Intelligence Scale®, Digit Span subtest, Fourth Edition (WAIS®-IV)
Working Memory - Child
Children’s Memory Scale (CMS), Attention and Concentration subtests
Scope of Collection
Element Considered Final Measures in Toolkit
Neurologic Complications
Silent Stroke Stroke Impact/Outcome
Overt Stroke Functionality after Stroke
Transcranial Doppler (TCD) Stroke Risk in Children with Sickle Cell Disease
Diffusion Tensor Imaging (DTI)
Angiography
Non-stroke neurologic complications
Cognitive complications
  • Dementia, Visual Memory, Working Memory, Executive Function, Attention
Adaptive Behavior/Adaptive Function
Intelligence Scale
Transfusion
Acute and Chronic Pain
Interference
Use of Substances of Addiction
  • Marijuana use
Transfusion
Quality of Life and Patient-Reported Outcomes
Functional measures of well-being
  • Fatigue, pain, pain interference, depression, anxiety, mobility
Quality of Life in Sickle Cell Disease
Self-efficacy in Sickle Cell Disease
Pain
  • Treatment, symptoms, communication, worry (pediatric)
Activities of Daily Living
  • Physical, social, emotional, school functioning
Health Services
Quality of Care - Hospitalization, re-hospitalization - TCD, treatments, medications Quality of Care
Preventive care (flu shots, hydroxyurea)
Acute Care
Quality indicators for pediatric sickle cell disease
Working Group Roster:

WG Members:

Robert J. Adams, MD, MS, Co-Chair
Medical University of South Carolina
Charleston, SC
Julie A. Panepinto, MD, MSPH, FAAP, Co-Chair
Medical College of Wisconsin
Milwaukee, WI
F D. Armstrong, PhD
University of Miami
Miami, FL
David C. Brousseau, MD, MS
Medical College of Wisconsin
Milwaukee, WI
Judith A. Paice, PhD, RN
Northwestern University
Evanston, IL
Steven Pavlakis, MD
Maimonides Medical Center
Brooklyn, NY
Marsha J. Treadwell, PhD
Children's Hospital Oakland Research Institute
Oakland, CA

Sickle Cell Disease Panel Liaison, WG Manager and WG Supervisor:

Wayne Huggins, PhD, WG Supervisor
RTI International
Research Triangle Park, NC
Tracey L. Grant, MS, WG Manager
RTI International
Statistics and Epidemiology Division
Research Triangle Park, NC

National Institute of Diabetes and Digestive and Kidney Diseases Liaison:

Kevin Abbott, MD, MPH
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Bethesda, MD

Centers for Disease Control and Prevention Liaison:

Mike Soucie, PhD
Centers for Disease Control and Prevention
Atlanta, GA

National Human Genome Research Institute (NHGRI) Liaison:

Vence L. Bonham, Jr., JD
National Human Genome Research Institute (NHGRI)
Bethesda, MD
Keisha Findley, PhD
National Human Genome Research Institute (NHGRI)
Bethesda, MD

National Cancer Institute (NCI) Liaison:

Denise Stredrick, PhD
National Cancer Institute (NCI)
Rockville, MD

NIH National Heart, Lung and Blood Institute Liaison:

Susan M. Czajkowski, PhD
National Heart, Lung, and Blood Institute (NHLBI)
Bethesda, MD
Michael M. Engelgau, MD, MS
National Heart, Lung, and Blood Institute (NHLBI)
Bethesda, MD
Joylene I. John-Sowah, MD, MPH
National Heart, Lung, and Blood Institute (NHLBI)
Bethesda, MD
Harvey Luksenburg, MD
National Heart, Lung, and Blood Institute (NHLBI)
Bethesda, MD
Emmanuel K. Peprah, PhD
National Heart, Lung, and Blood Institute (NHLBI)
Bethesda, MD

Sickle Cell Disease Research and Scientific Panel (SRSP) Liaison:

James R. Eckman, MD
Emory University
School of Medicine
Atlanta, GA
Kathryn L. Hassell, MD
University of Colorado, Denver
Denver, CO
Ellen M. Werner, PhD, MA
National Heart, Lung, and Blood Institute (NHLBI)
Blood Diseases Branch
Bethesda, MD

National Institute of Arthritis and Musculoskeletal and Skin Diseases Liaison:

Phil Tonkins Jr., DrPH
National Heart, Lung, and Blood Institute (NHLBI)
Bethesda, MD
James Witter, Md, PhD, FACR
National Institute of Arthritis and Musculoskeletal and
Skin Diseases (NIAMS)
Bethesda, MD

Eunice Kennedy Shriver National Institute of Child Health and Human Development Liaison:

Tina Urv, PhD
Eunice Kennedy Shriver National Institute of Child Health and
Human Development (NICHD)
Rockville, MD

National Institute on Minority Health and Health Disparities Liaison:

Bridgett Rahim-Williams, PhD, MPH, MA
National Institute on Minority Health and Health Disparities (NIMHD)
Bethesda, MD

National Institute of Neurological Disorders and Stroke Liaison:

Joanne C. Odenkirchen, MPH
National Institute of Neurological Disorders and Stroke (NINDS)
Rockville, MD

National Library of Medicine Liaison:

Clement J. McDonald, MD
National Library of Medicine (NLM)
Bethesda, MD
Jerry Sheehan, MS, BS
National Library of Medicine (NLM)
Bethesda, MD

Health Resources & Services Administration Liaison:

Edward D. Ivy, MD, MPH
Health Resources & Services Administration
Rockville, MD

Supplemental Information includes protocols that the Working Group or Expert Review Panel considered useful and highly relevant to the domain but do not meet the criteria for inclusion in the Toolkit.

Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection Supplemental Information includes:
Additional Information:

There is no additional information for this collection.

Measure Protocols Domain/Collection
Adaptive Behavior/Adaptive Function Add to My Toolkit Adaptive Behavior/Adaptive Function Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection
Pain (Type and Intensity) Add to My Toolkit Adolescent Pediatric Pain Tool (APPT) Gastrointestinal
Add to My Toolkit Short Form-McGill Pain Questionnaire-2 (SF-MPQ-2) Gastrointestinal
Quality of Life in Sickle Cell Disease Add to My Toolkit Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection
Add to My Toolkit PedsQL Sickle Cell Disease Module Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection
Alcohol - 30-Day Quantity and Frequency Add to My Toolkit Alcohol - 30-Day Quantity and Frequency Alcohol, Tobacco and Other Substances
Executive Function Add to My Toolkit Executive Function Neurology
Add to My Toolkit Executive Function - Child Neurology
Health Quality Index for Economic Evaluations Add to My Toolkit Health Quality Index for Economic Evaluations - Adult Substance Use-related Co-morbidities and Health-related Outcomes
Add to My Toolkit Health Quality Index for Economic Evaluations - Child and Adolescent Substance Use-related Co-morbidities and Health-related Outcomes
History of Stroke - Ischemic Infarction and Hemorrhage Add to My Toolkit History of Stroke - Ischemic Infarction and Hemorrhage Neurology
Impairment Add to My Toolkit Impairment - Adolescent Mental Health Research Core: Tier 1
Add to My Toolkit Impairment - Adult Mental Health Research Core: Tier 1
Intelligence Scale Add to My Toolkit Intelligence Scale - 16 to 90 years Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection
Add to My Toolkit Intelligence Scale - 2 years, 6 months to 7 years, 7 months Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection
Add to My Toolkit Intelligence Scale - 6 to 16 years 11 months Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection
Add to My Toolkit Intelligence Scale - Birth to 3.5 years Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection
Migraine Add to My Toolkit Migraine - Adult Neurology
Add to My Toolkit Migraine - Children Neurology
Motor and Attentional Impulsivity (Immediate and Delayed Memory Task) Add to My Toolkit Motor and Attentional Impulsivity (Immediate and Delayed Memory Task) Substance Use-related Neurobehavioral and Cognitive Risk Factors
Stroke Impact/Outcome Add to My Toolkit NIH Stroke Scale (NIHSS) Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection
Add to My Toolkit Pediatric NIH Stroke Scale (PedNIHSS) Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection
Pain Add to My Toolkit Pain Skin, Bone, Muscle and Joint
Physical, Social, and Mental Health Functioning (SF-36V2) Add to My Toolkit Physical, Social, and Mental Health Functioning (SF-36V2) Gastrointestinal
Quality of Care Add to My Toolkit Quality of Care - Adults Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection
Add to My Toolkit Quality of Care - Children Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection
Quality of Life Add to My Toolkit Quality of Life - Adult Rare Genetic Conditions
Add to My Toolkit Quality of Life - Pediatric Rare Genetic Conditions
Quality of Life Enjoyment and Satisfaction Add to My Toolkit Quality of Life Enjoyment and Satisfaction - Adult Psychosocial
Add to My Toolkit Quality of Life Enjoyment and Satisfaction - Children Psychosocial
Functionality after Stroke Add to My Toolkit Recovery and Recurrence Questionnaire (RRQ) - Pediatrics Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection
Add to My Toolkit Stroke Impact Scale (SIS) - Adults Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection
Screening and Severity of Substance Use Problems Add to My Toolkit Screening and Severity of Substance Use Problems - Adolescents Assessment of Substance Use and Substance Use Disorders
Add to My Toolkit Screening and Severity of Substance Use Problems - Adults - Alcohol - Lifetime Assessment of Substance Use and Substance Use Disorders
Add to My Toolkit Screening and Severity of Substance Use Problems - Adults - Alcohol - Past 12 Months Assessment of Substance Use and Substance Use Disorders
Add to My Toolkit Screening and Severity of Substance Use Problems - Adults - Drugs Assessment of Substance Use and Substance Use Disorders
Self-efficacy in Sickle Cell Disease Add to My Toolkit Self-efficacy in Sickle Cell Disease Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection
Service Utilization and Cost Add to My Toolkit Service Utilization and Cost Substance Use-related Co-morbidities and Health-related Outcomes
Stroke Risk in Children with Sickle Cell Disease Add to My Toolkit Stroke Risk in Children with Sickle Cell Disease - TCD Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection
Add to My Toolkit Stroke Risk in Children with Sickle Cell Disease - TCDi Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection
Substances - 30-Day Frequency Add to My Toolkit Substances - 30-Day Frequency Alcohol, Tobacco and Other Substances
Sustained and Selective Attention Add to My Toolkit Sustained and Selective Attention Sickle Cell Disease: Neurology, Quality of Life, and Health Services Specialty Collection
Verbal Memory Add to My Toolkit Verbal Memory - Adult Neurology
Add to My Toolkit Verbal Memory - Child Neurology
Visual Memory Add to My Toolkit Visual Memory - Adult Neurology
Add to My Toolkit Visual Memory - Child Neurology
Working Memory Add to My Toolkit Working Memory - Adult Neurology
Add to My Toolkit Working Memory - Child Neurology