ICF UPDATE: 2004 NCHS Data Users Conference July 14, 2004

Paul J. Placek, Ph.D. Senior Statistician, CPHDSS

Office of the Center Director, National Center for

     Health Statistics, CDC 3311 Toledo Road - Metro IV - Suite 2414

Hyattsville, MD 20782 tel 301-458-4437 fax 301-458-4022 PJP2@CDC.GOV

ICFICF

World Health OrganizationWorld Health Organization Classification Assessment Surveys & Terminology GroupClassification Assessment Surveys & Terminology Group

as a as a Member in the Member in the WHO Family of WHO Family of

International International ClassificationsClassifications

on a par with and to be used on a par with and to be used with ICD-10 with ICD-10 www.who.int/classification/icf

ICF ICF

• developed over a decade with the developed over a decade with the active participation of active participation of 65 countries65 countries

• approved May 2001 by the 191 approved May 2001 by the 191 Member States of theMember States of the World Health World Health AssemblyAssembly

• developed & published developed & published simultaneouslysimultaneously in 6 WHO Official Languagesin 6 WHO Official Languages

– EnglishEnglish– French French – ArabicArabic

• Public access on INTERNET Public access on INTERNET • Electronic versions available Electronic versions available

• in use as the international standardin use as the international standard for health and disabilityfor health and disability

– Spanish Spanish – ChineseChinese– RussianRussian

Health Condition Health Condition ((disorder/diseasedisorder/disease))

Comprehensive FrameworkComprehensive Framework

Environmental Environmental FactorsFactors

Personal Personal FactorsFactors

Body Body function&structure function&structure (Impairment)(Impairment)

Activities Activities (tasks and (tasks and actions)actions)

(Limitation)(Limitation)

Participation Participation (involvement in (involvement in life situation)life situation)(Restriction)(Restriction)

Body Functions and StructuresBody Functions and Structures

Skin and related structuresSkin and related structuresFunctions of the skin and related Functions of the skin and related structuresstructures

Structures related to movementStructures related to movementNeuromusculoskeletal and Neuromusculoskeletal and movement-related functionsmovement-related functions

Structures related to the genitourinary Structures related to the genitourinary and reproductive systemsand reproductive systems

Genitourinary and reproductive Genitourinary and reproductive functionsfunctions

Structures related to the digestive, Structures related to the digestive, metabolic and endocrine systemsmetabolic and endocrine systems

Functions of the digestive, metabolic Functions of the digestive, metabolic and endocrine systemsand endocrine systems

Structures of the cardiovascular, Structures of the cardiovascular, immunological and respiratory immunological and respiratory systemssystems

Functions of the cardiovascular, Functions of the cardiovascular, haematological, immunological and haematological, immunological and respiratory systemsrespiratory systems

Structures involved in voice and Structures involved in voice and speechspeech

Voice and speech functionsVoice and speech functions

The eye, ear and related structuresThe eye, ear and related structuresSensory functions and painSensory functions and pain

Structures of the nervous systemStructures of the nervous systemMental functionsMental functions

Activities and ParticipationActivities and Participation

11 Learning &Applying KnowledgeLearning &Applying Knowledge22 General Tasks and DemandsGeneral Tasks and Demands33 CommunicationCommunication44 MovementMovement55 Self CareSelf Care66 Domestic Life AreasDomestic Life Areas77 Interpersonal InteractionsInterpersonal Interactions88 Major Life AreasMajor Life Areas99 Community, Social & Civic LifeCommunity, Social & Civic Life

Environmental FactorsEnvironmental Factors

1. Products and technology 1. Products and technology

2. Natural environment and human-2. Natural environment and human-made changes to the environmentmade changes to the environment

3. Support and relationships3. Support and relationships

4. Attitudes 4. Attitudes

5. Services, systems and policies 5. Services, systems and policies

ICF CODES

• About 1,400 codes at 4–digit level• s = structure in body codes• f = function in body codes Using

the fourth option in Activities & Participation…• d = “disability” in A & P list • Qualifiers indicate extent or magnitude of impairment; or

extent of difficulty in executing A & P activities • xxx.0 = no difficulty • xxx.1 = mild difficulty• xxx.2=moderate difficulty (med., fair,25-49%) • xxx.3=severe xxx.4= complete (total, 96-100%) • e = environmental facilitator (+1 if mild, +2, +3, +4 if

complete) or barrier (.1 if mild barrier, etc.)

ICF for Children and Youth (ICF-CY) just available

• In development since 2001• On the WHO website July ‘04

www.who.int/classification/icf• Uses same code structure as ICF (but

expanded) • Six month comment period just began• ICF-CY has same survey and clinical

applications as ICF

SURVEY QUESTIONS CAN BE BACK CODED TO ICF

1. Are you able to have a conversation with one other person (hearing aid if necessary? (N)

2. Does anyone in your household have difficulty in understanding what is said if someone is talking on the other side of the room? (SA)

3. Does anyone in the family have any trouble hearing what is said in normal conversation (even when wearing a hearing aid)? (US)

4. Do you have any difficulty hearing what is said in a conversation with one other person? (C)

*Sample of Survey Items

Body FunctionB230 Hearing function

B2300 Sound detection

Activities and Participation

D310 Communication with receiving – spoken messages

D315 Communication with – receiving – non-verbal messagesD3150 Communicating with- receiving-body gestures

FEDERAL CLINICAL DATA COULD BE CODED TO ICF – POSSIBLE APPLIATIONS• Social Security Disability Programs

• SSA could require submission of assessment of functional criteria of its Physical and Mental Listings using ICF

• Would standardize ‘medical evidence’ for use by SSA evaluators

• DHHS Medicare claims• Clinician’s familiarity with ICF would provide

a more standard assessment on MDS’s existing checklist

• Department of Education• ICF could be used to standardize eligibility

reviews

EXAMPLE: Mrs. Stevens has severe degenerative arthritis (SSA Listing of Impairments 1.03)• ICF b530.3 extremely obese• ICF b28016.3 arthritis pain acute• ICF d6200.4 can no longer grocery shop• ICF d465.4 not mobile even with walker• ICF d4702.4 boarding bus with high steps

is just too difficult• ICF d7600.2; e310.2 daughter lives

nearby but relationship is strained, no help from her

• ICF 7100.3 arthritis in right hip

Mrs. Stevens had a hip replacement

• ICF e5800+3 successful rehab services• ICF d465.1 with walker, she had only mild

difficulty in navigating• ICF e5800+1 slightly helpful physical therapist

visits at home• ICF e580.4 but Medicare discontinued her

home care coverage• ICF b28016.0 now she is no longer in pain• ICF d4702.1 and can board the bus with only

mild difficulty

Mrs. Stevens …a happy ending• ICF d465.0 she no longer needs her

walker to get around• ICF d9103.0 she joined a

neighborhood crafts club and attends regularly

• ICF e1650+4 she won the state lottery grand prize

• ICF d7702.0 and at the crafts club she met a gentleman and had a torrid affair

ADVANTAGES OF ICF• Degree of impairment or activity limitation • Longitudinal applications: Same code can be

applied at two points in time, with different qualifiers, to show progress or decline

• Captures variety and depth in functional status• Captures social relationships and social support• Works with clinical terminologies used in

many professions• Useable for rehab assessment & outcome

evaluation• Can be used with ICD and other codes

CONSOLIDATED HEALTH INFORMATICS INITIATIVE HAS RECOMMENDED FOR DISABILITY DOMAIN…

• Complete content analysis of ICF, SNOMED-CT and other sources within UMLS

• Full mapping between ICF and SNOMED_CT

• www.whitehouse.gov/omb/egov/downloads/disability_full_public.doc

ICF RELEVANCE FOR PWD IN “NEW FREEDOM INITIATIVE” June 2001 Executive Order 13217

• Integrate into workforce• Promote community-based services• Promote safe housing, home ownership• Access to assistive technology• Expand educational opportunity • Expand transportation options• Full access to community life• Health of PWD

New Freedom Initiative (& ICF Codes)• Integrate into workforce(d845 on p.

155)• Community based

services/supports(d825 on p. 154)• Housing/ownership(d610 on p. 145)• Workforce/caregivers(d660 on p. 148)• Transportation(d470 on p. 140)• Access to community life (d710 on p.

150, d910on p. 158)• Health (d510 on p. 142)

OFFICE ON DISABILITY (DHHS) ESTAB. ICF SUBCOMMITTEE UNDER NFI WORKGROUP

• Chaired by Margaret Giannini, M.D., F.A.A.P., Director, OD

• Reps from every HHS agency• Meets monthly to review possible ICF

applications within their respective Federal agencies

• ICF can benchmark NFI objectives

THE NACC HAS HAD 10 ANNUAL MEETINGS ON ICF (& PREDECESSOR ICIDH)• 10th - June 2-4, 2004 in Halifax• Record # of 54 abstracts• Record # of 103 registrants• Record # of 12 countries attend• Poster sessions• Concurrent sessions• Top papers in Disability and Health book

Spring 2005• June 1 all-day ICF Tutorial

HALIFAX GOALS

• Bring together ICF researchers and users from Canada, U.S. and abroad

• Report accomplishments in past year• Learn about applications of ICF and ICF

research• Develop a draft North American Research

Agenda for ICF• Set priorities for ICF research and

implementation• Develop science base for ICF implementation• Sell needed research to agencies and funders

OVER 45 PAPERS EACH HAD UP TO 6 RESEARCH RECOMMENDATONS• Nearly 200 research implications

stated• Attendees voted on top 5 priorities• Preliminary draft is available from

Paul Placek

ICF RESEARCH PRIORITIES FOR 44 PERSONS IN HALIFAX (each person had 5 votes—the total voting for each is in parentheses)

• Clinical applications(N=4)• Empirical applications of ICF use in clinical

practice(N=11)• Crosswalks to ICF of assessment tools and

terminologies(23)• Development of ICF-based assessment tools(16)• Protocols for ICF codebooks and procedures

manuals(10)• Measurement of quality of care using ICF(0)• Scientific appraisals of ICF in assessing functional

status(4)• Comparisons of self, proxy and clinical assignments of

ICF codes(1)• Applications of ICF in health programs(5)

• Administrative applications(2)• Assessments of ICF uses in administrative records(5)• Research on use of ICF in payment and

reimbursement systems(1)• Program assessments using ICF (e.g., ADA, Olmstead)

(2)• Empirical studies of ICF implementation in public and

private sector venues (1)• Operationalizing ICF(4)• Examinations of approaches for operationalizing ICF

terms and concepts (5)• Reliability and validity studies(10)• Empirical research on the qualifiers(7)• Use of capacity versus performance(10)• Delineation of activities and participation(14)

• Survey applications(2)• Harmonization of survey questions with ICF terms,

including data dictionaries(5) • Pre and post harmonization strategies(4)• Educational applications and training(3)• Development and utility of training tools(7)• Scholarly studies of ICF in various types of academic

curricula(2)• ICF Early in school system(0)• National and international comparisons of ICF

implementation(12) • Appraisals of ICF by the disability community(6)• Updating ICF, ICF-2(2)• Convergence with other terminologies(2)• Cohesion among conceptual frameworks(3)• Policy Applications , eg, Income support, housing(8)

• The world of consumers e.g., Participant Action Research(6)

• Developing methods for crosswalking(3)• Research on environmental factors (e.g. assistive

devices) impact participation(11)• Universal design(3)• International comparisons(5)• Application of technology to uses of ICF(2)• Use for institutionalized , esp. E factors(2)• Diffusion to other sectors(1)• Accessibility of ICF in different formats (e.g., Braille)

(Sec 508) (W3C WAI)(1)• How can ICF influence clinical practice?(1)• Use for special populations-children, aged,

prisoners(1)

HIGHEST PRIORITY RESEARCH (N=10+ votes)• Crosswalks of assessment tools & terminologies to

ICF(23)• Development of ICF-based assessment tools(16)• Delineation of activities & participation(14)• National & international comparisons of ICF

implementation(12)• Empirical applications of ICF use in clinical practice(11)• Environmental factors (& assistive devices) impact on

participation (11) • Protocols for ICF codebooks & procedures manuals (10)• Reliability & validity studies (10)• Use of capacity vs. performance (10)

JOIN US IN 2005

• 11TH NACC Meeting on ICF June 13-17, 2005 in Rochester, Minnesota at Mayo Clinic

• CEU Credits• ICF Tutorial

TRAINING TOOLS AND TUTORIAL• CODE ICF - web-based courseware (in

development)• ICF Video – 25 ICF experts • ICF Curricula (Mulhorn, Yoder)• Brochure, table top exhibit• TUTORIAL – June 1 in Halifax, covered

terminologies, applications, evolution, ICF in surveys and clinical practice

TO LEARN MORE

• Since Fall 2002, read the Monthly “NACC Clearinghouse on ICF” Messages at http://www.cdc.gov/nchs/about/ otheract/icd9/icfhome.htm

• Free, monthly, email news on ICF in North American

• Covers awards, publications, meetings, training, “Spotlight on…”

SEND EMAIL TO PJP2@CDC.GOV FOR• To join the NACC Clearinghouse on ICF• For free reprints of 6 articles on ICF and

functional status in Vol. 24 No. 3, 2003 Health Care Financing Review www.cms.hhs.gov/review/03spring/ default.asp

• For free reprints of 15 ICF articles in Vol .25 No. 11-12, 2003 Disability and Rehabilitation

THANK YOU VERY MUCH…and today is my son’s 9th birthday, so HAPPY BIRTHDAY VINCENT!