Don Lollar, EdDSenior Research Scientist

National Center on Birth Defects and Developmental Disabilities

CENTERS FOR DISEASE CONTROL AND PREVENTION

dlollar@cdc.gov

National Center on Birth Defects and Developmental DisabilitiesNational Center for Chronic Disease Prevention and Health PromotionNational Center for Environmental HealthNational Center for Health StatisticsNational Center for Infectious DiseaseNational Center for Injury Prevention and ControlNational Center for HIV, STD, and TB PreventionNational Institute for Occupational Safety and HealthNational Immunization ProgramEpidemiology Program OfficePublic Health Practice Program Office

CDC’s CIO Structure

Top 10 Public Health Achievements of the 20th Century

• Vaccination

• Healthier mothers and babies

• Family planning

• Safer and healthier foods

• Fluoridation of drinking water

• Control of infectious diseases

• Decline in deaths from heart disease and stroke

• Recognition of tobacco use as a public health problem

• Motor vehicle safety

• Safer workplaces

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“Academic health centers need

more balance in research...They need faculty who are not just doing

research in the laboratory, but peoplewho can go out into the community andconduct community-basedresearch to learn how toapply the findings.”

Surgeon General David SatcherNational Press Club, 5/6/98

Public health research is research that is directly

applicable to the prevention or control of diseases, conditions,

or injuries and/or the promotion of health and well-

being

PublicHealth Approach

Define the Problem

Identify risk and protective factors

Develop and test solutions

CHANGE

STRATEGIC DIRECTIONS

CDC’S Futures Initiative

Trends in Research

– Intervention/dissemination research

– Cross-cutting research—reduce “silos”

– Big Science

– Support for researcher training

OFFICE OF PUBLIC HEALTH RESEARCH: EXTRAMURAL

• NEW INITIATIVE --DR. JULIE GERBERDING, CDC DIRECTOR

• Increase external research projects, partners, and resources

• Requires additional infrastructure--OER• Re-defining scientific responsibilities

– NIH model: IMPAC II (Information, Management, Planning, Analysis, and Coordination) database system

– Peer review

NCBDDD’s Mission• Promoting the health of babies, children, and adults, and enhancing the potential

for full productive living• Identify the causes of birth defects and developmental disabilities• Help children develop and reach their full potential• Promote health and well-being among people of all ages with disabilities

NCBDDD Divisions

1. Birth Defects and Developmental Disabilities

2. Hereditary Blood Disorders

3. Human Development and Disability

Birth Defects State Programs

37 states have monitoring programs Improving timeliness and quality of data Assists families with Neural Tube Defect-

affected pregnancies Refer children to services or follow-up National Birth Defects Prevention NetworkNational Birth Defects Prevention Network Research in China with folic acid

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Spina bifida

Anencephaly

1995 1996 1997 1998 1999 2000 2001

Year & quarter of birth

Pre-fortification Optional fort. Mandatory fortification

Prevalence of spina bifida and anencephaly among all participating

surveillance systems

Developmental DisabilitiesDevelopmental Disabilities

• 12 % of school age children need special education• Special education costs over $50 billion per year • Studies of prevalence of FAS, using BRFSS• Targeted media campaigns aimed at reducing alcohol-exposed

pregnancies • Educational intervention studies in high risk women, and

intervention studies to improve outcomes of children with FAS

Programs in Autism and Developmental Disabilities

• Monitoring programs in 18 states • Centers for Autism Research and Epidemiology in

6 states looking for risk factors and causes.• CDC-Danish Collaborative Studies• Metropolitan Atlanta Study of descriptive

epidemiology of autism• Metropolitan Atlanta Study of MMR vaccine and

autism

Hemophilia Treatment Center program Women with bleeding and clotting disorders Thrombophilia pilot program & research Thalassemia program Blood safety surveillance program Peer education and support program Comprehensive Services: diagnosis, clinical

management & prevention services, orthopedic, dental care, training, counseling, and education through 3 networks with 150 hospital-based programs

Division of Hereditary Blood Disorders Programs

Division of Human Development and Disability

• Disability and Health• Women with Disabilities• Special Olympics• Duchenne Muscular

Dystrophy

• Early Hearing Detection and Intervention (EHDI)

• ADHD• Legacy for Children

Attention Deficit Hyperactivity Disorder

• Most common neurobehavioral disorder of childhood—causes unknown

• Population-based, epidemiologic research on school-aged children with ADHD in 3 communities.

• Established the National Resource Center on Attention-Deficit/Hyperactivity Disorder – Partner with Children and Adults with

Attention-Deficit/Hyperactivity Disorder (CHADD)

Early Hearing Detection and Intervention Program (EHDI)

• Before Universal Newborn Hearing Screening, average age identified--2 ½ and 3 years old.

1. Screening all babies for hearing loss before one month of age: preferably before hospital discharge

2. Conducting diagnostic audiologic evaluations before three months of age for all infants who do not pass the hearing screening

3. Enrolling infants and children with identified hearing loss in appropriate intervention services before six months of age.

Percentage of Babies Screened 1993

>90%

75-89%

60-74%

40-59%

25-39%

10-24%

5-9%

< 5%

Percentage of Babies Screened 2001

>90%75-89%60-74%40-59%

25-39%10-24%5-9%< 5%NCHAM survey, 2001

DISABILITY AND HEALTH“Living Well with a Disability”

Outcomes at 12 months:– 10% decline in health

utilization costs – Decline in hospital days

from 1.3 to 0.4– 1.1 fewer days of poor

mental health– 25% decline in reported

secondary conditions

Barriers to Screening

• Difficulty with Difficulty with positioningpositioning

• Inaccessible facilities Inaccessible facilities and equipmentand equipment

• Provider attitudesProvider attitudes

Goal 1: Increase Quality and Years of Healthy Life

Goal 2: Eliminate Health Disparities

CHAPTER 6—DISABILITY & SECONDARY CONDITIONS HEALTH/ILLNESS DISABILITY/MEDICALW.H.O. CLASSIFICATION SYSTEM

Emerging Role of CDC and Disability and Health

ICD HISTORY

• 1853 FIRST INTERNATIONAL STATISTICAL CONGRESS– FIRST UNIFORM CLASSIFICATION OF CAUSES OF DEATH-

• 1855 TWO LISTS SUBMITTED—FARR (EPIDEMICS, GENERAL, LOCAL, DEVELOPMENT AND VIOLENCE; D’ESPINE NATURE(GOUTY, HERPETIC, ETC.) . CONGRESS COMPROMISED. NEXT 35 YEARS, MOVED TOWARD ANATOMICAL SITES (FARR), THOUGH NEVER UNIVERSAL ACCEPTANCE.

• 1893 BERTILLON CREATED A SYNTHESIS OF ENGLISH, GERMAN, AND SWISS CLASSIFICATIONS BASED ON FARR’S GENERAL/LOCAL PRINCIPLE; ACCEPTED IN NORTH AMERICAN IN 1898.

• 1948 SIXTH REVISION OF INTERNATIONAL LISTS OF DISEASES AND CAUSES OF DEATH. APPROVED AN INTERNATIONAL LISTS OF CAUSES OF MORTALITY AND MORBIDITY AND SUGGESTED INTERNATIONAL COOPERATION.

ICD/ICF HISTORY

• 1979 RECOMMENDATION TO USE ICD FOR THE EVALUATION OF MEDICAL CARE—– BEGINNING OF CODED ENCOUNTERS

• RECOMMENDED TWO SUPPLEMENTS TO ICD-9– “PROVISIONAL PROCEDURES CLASSIFICATIONS”

BEGAN CURRENT PROCEDURAL TERMINOLOGY--CPT CODES

– IMPAIRMENTS AND HANDICAPS CLASSIFICATION AS SUPPLEMENT TO NINTH REVISION--1980, PUBLISHED INTERNATIONAL CLASSIFICATION OF IMPAIRMENTS, DISABILITIES, AND HANDICAPS

• 2001 WORLD HEALTH ASSEMBLY APPROVED ICF—INTERNATIONAL CLASSIFICATION OF FUNCTIONING, DISABILITY, AND HEALTH

ICF AIM AND PRINCIPLES

• AIM—TO PROVIDE A UNIFIED AND STANDARD LANGUAGE AND FRAMEWORK FOR THE DESCRIPTION OF HEALTH STATES

– A WORTHY BUT CHALLENGING GOAL

»PRINCIPLES• UNIVERSAL NATURE OF DISABILITY EXPERIENCE• CROSSES THE LIFE SPAN— BIRTH TO DEATH• ETIOLOGY NEUTRAL— PHYSICAL, EMOTIONAL,etc.

• NEUTRAL LANGUAGE— FUNCTION, ACTIVITY, PARTICIPATION, ENVIRONMENT

USES OF ICF

• CLINICAL TOOL— assess needs, evaluate progress and interventions

• RESEARCH TOOL— measure outcomes, impact of environmental factors on activity limitations and societal participation

• SOCIAL POLICY TOOL—social security planning, environmental design and implementation

• EDUCATIONAL TOOL—health care curricula• STATISTICAL TOOL—COLLECTING DATA

FOR POPULATION SURVEYS (NHIS) OR ADMINSTRATIVE DATA (HCFA)

ICF CONCEPTS

• Body doesn’t function properly; is impaired– FUNCTIONS AND STRUCTURES

• Personal activities are limited• Participation in life situations is restricted

• Qualifiers interpret pivotal constructs• Environment affects all dimensions of

functioning

ICF ICF in health & disability statisticsin health & disability statistics

• Common DomainsCommon Domains– MobilityMobility - Cognition- Cognition - Mood- Mood– Self CareSelf Care - Usual Activities - Usual Activities ... ...

• link data from both health and disability link data from both health and disability

• Multiple ComponentsMultiple Components

• overcomes the “impairment” focusovercomes the “impairment” focus

• Environmental FactorsEnvironmental Factors

• ComparabilityComparability

STATISTICAL TOOL

• SURVEYS—integrating ICF principles– IDENTIFICATION OF PEOPLE WITH DISABILITIES AS A SUBPOPULATION

• Usually only a few questions to identify people with disabilities

• Traditional approach uses agency mandate to frame purpose and definition—ADA wants broad, Social Security wants narrow

• ICF allows clarification of which dimension—body, activity, participation, environment

• May use one or combination of dimensions for identification

• Mixing dimensions, for example impairment with participation, without environment can be problematic

– e.g. “Because of a physical disability or health problem, are you limited in the kind or amount of work you can do?”

STATISTICAL TOOL

• SURVEYS--BEYOND IDENTIFICATION, MAY BE A SCREEN FOR ADDITIONAL QUESTIONS USING ICF AS CONCEPTUAL FRAME TO AID IN ANALYSIS

• IMPAIRMENT QUESTIONS OFTEN LESS RELIABLE

• ACTIVITY LIMITATIONS MORE RELIABLE DUE TO PERSONAL REFERENCES; “CAN YOU RECOGNIZE A FRIEND ACROSS THE STREET?’, “CAN YOU UNDERSTAND CONVERSATION ACROSS A ROOM?”

• PARTICIPATION IN SOCIETY PROBABLY IS MOST EFFECTIVE AS OUTCOME MEASURE—WORK, LEISURE, SCHOOL, FRIENDS……

• ENVIRONMENT IS LEAST USED. DATA FROM THE RECENT NATIONAL HEALTH INTERVIEW SURVEY INCLUDES QUESTIONS ON BARRIERS ACROSS THE POPULATION

ICF: PUBLIC HEALTH UTILITY

• CONCEPTUAL CLARITY– SEPARATION OF CONCEPTS– INCLUSION OF ENVIRONMENT

• ADMINISTRATIVE DATA– CLINICAL RECORDS

FUTURE OF PUBLIC HEALTH DATA

SUMMARY• ICF DIMENSIONS SHOULD BE THE CONCEPTUAL STARTING

POINT FOR SURVEY QUESTIONS SO THAT OPERATIONAL DEFINITION IS CLEAR—WHICH DIMENSION(S) ARE BEING USED TO IDENTIFY POPULATION--ACTIVITY LIMITATIONS

• QUESTIONS ABOUT PARTICIPATION IN SOCIETY SHOULD BE USED WITH THE ENTIRE SAMPLE AND USED AS OUTCOME/DEPENDENT MEASURES

• QUESTIONS ABOUT ENVIRONMENTAL FACTORS SHOULD ALSO BE USED ACROSS THE SAMPLE

• PUBLIC HEALTH DATA POTENTIAL FOR ICF IS SUBSTANTIAL, REQUIRING A BROADENING PERSPECTIVE.

Partnering

Partners Enhance Our Work

• Participate in public health research and practice

• Disseminate information about our programs

• Educate providers, practitioners, policymakers, and the public about our mission and activities

• Provide leadership in identifying emerging issues