ICF UPDATE 2004 NCHS Data Users Conference July

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 PJP 2@CDC. GOV

World Health Organization Classification Assessment Surveys & Terminology Group ICF as a Member in the WHO Family of International Classifications on a par with and to be used with ICD-10 www. who. int/classification/icf

ICF • developed over a decade with the active participation of 65 countries • approved May 2001 by the 191 Member States of the World Health Assembly • developed & published simultaneously Spanish in 6 WHO Official– Languages – English – French – Arabic – Chinese – Russian • Public access on INTERNET • Electronic versions available • in use as the international standard for health and disability

Comprehensive Framework Health Condition (disorder/disease) Body function&structure (Impairment) Activities (tasks and actions) (Limitation) Environmental Factors Participation (involvement in life situation) (Restriction) Personal Factors

Body Functions and Structures Mental functions Structures of the nervous system Sensory functions and pain The eye, ear and related structures Voice and speech functions Structures involved in voice and speech Functions of the cardiovascular, haematological, immunological and respiratory systems Structures of the cardiovascular, immunological and respiratory systems Functions of the digestive, metabolic and endocrine systems Structures related to the digestive, metabolic and endocrine systems Genitourinary and reproductive functions Structures related to the genitourinary and reproductive systems Neuromusculoskeletal and movement -related functions Structures related to movement Functions of the skin and related structures Skin and related structures

Activities and Participation 1 2 3 4 5 6 7 8 9 Learning &Applying Knowledge General Tasks and Demands Communication Movement Self Care Domestic Life Areas Interpersonal Interactions Major Life Areas Community, Social & Civic Life

Environmental Factors 1. Products and technology 2. Natural environment and humanmade changes to the environment 3. Support and relationships 4. Attitudes 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 Function B 230 Hearing function B 2300 Sound detection Activities and Participation D 310 Communication with receiving – spoken messages D 315 Communication with – receiving – non-verbal messages D 3150 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 b 530. 3 extremely obese ICF b 28016. 3 arthritis pain acute ICF d 6200. 4 can no longer grocery shop ICF d 465. 4 not mobile even with walker ICF d 4702. 4 boarding bus with high steps is just too difficult • ICF d 7600. 2; e 310. 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 e 5800+3 successful rehab services • ICF d 465. 1 with walker, she had only mild difficulty in navigating • ICF e 5800+1 slightly helpful physical therapist visits at home • ICF e 580. 4 but Medicare discontinued her home care coverage • ICF b 28016. 0 now she is no longer in pain • ICF d 4702. 1 and can board the bus with only mild difficulty

Mrs. Stevens …a happy ending • ICF d 465. 0 she no longer needs her walker to get around • ICF d 9103. 0 she joined a neighborhood crafts club and attends regularly • ICF e 1650+4 she won the state lottery grand prize • ICF d 7702. 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(d 845 on p. 155) • Community based services/supports(d 825 on p. 154) • Housing/ownership(d 610 on p. 145) • Workforce/caregivers(d 660 on p. 148) • Transportation(d 470 on p. 140) • Access to community life (d 710 on p. 150, d 910 on p. 158) • Health (d 510 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) • • 10 th - 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) (W 3 C 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 • 11 TH 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/icd 9/icfhome. htm • Free, monthly, email news on ICF in North American • Covers awards, publications, meetings, training, “Spotlight on…”

SEND EMAIL TO PJP 2@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/03 spring/ 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 9 th birthday, so HAPPY BIRTHDAY VINCENT!