1. World Health Organization Assessment Classification & Epidemiology Group International Classification of Functioning and Disability ICIDH-2

2. WHO Family of International Classifications SPECIALITY-BASED ADAPTATIONS ICIDH International Classification of Functioning and Disability Procedures Reasons for encounter ICD International Classification of Diseases PRIMARY CARE. Lay reporting. Community-based information schemes IND Nomenclature of Diseases SPECIALITY-BASED ADAPTATIONS

4. Need for the ICIDH n Change in the Health Care Scene: from acute to chronic disease n Change from disease focus to consequences focus n Need for an international ‘common language’ of consequences n To serve the needs of people with disability

5. Foundations of ICIDH-2 n Human Functioning- not merely disablement n Universal Model- not a minority model n Integrative Model- not merely medical or social n Interactive Model- not linear progressive n Parity - not etiological causality n Inclusive- contextual:environment & person n Cultural applicability- not western concepts

6. The “Bridged” Model of Disablement Medical AND Social Models n PERSONAL problem AND SOCIAL problem n medical care AND biopsychosocial integration n individual treatment AND social action n professional help ANDindividual & collective responsibility n personal AND environmental adjustment manipulation n behavior ANDattitude n care AND human rights n health care policy AND politics n individual adaptation AND social change

7. UNIVERSAL vs MINORITY

8. Cultural Applicability Conceptual equivalence of Classification Translatability Usability International Comparisons

9. Functioning & Context Person Environment

10. ICIDH levels: forest - tree - stem - branch - leafs

11. International Classification of Impairments, Activities, and Participation WORLD HEALTH ORGANIZATION GENEVA 2000 A manual of Dimensions of Functioning and Disablement ICIDH- 2 1. Main volume with glossary glossary 2. Clinical Descriptions & Assessment Guidelines 3. Assessment Criteria for Research 4. Dedicated Assessment Tools Assessment Tools

12. Principles of Revision Principles of Revision n n Multi-center network support for development and later training n n WHO being the client server n n Multiple versions for different users at different sectors and levels of health care n n Field trials: applicability is the key n n Empirical work serves the conceptual position and comes before ideological position

13. WHO ACE Level 3 Argentina Brazil Chile China Denmark Egypt Islamic Republic of Iran Malaysia Pakistan Philippines South Africa Children’s T F MH TF NACC Nordic CC Japan CC French CC Dutch CC Australian CC Level 2 UK CC Revision Structure ALL WHO Member States Environment T F OHS CEQ EBD Ageing Substance Abuse Mental Health DPR Health Promotion Other Clusters Level 1

14. Collaborating Centers n French - I focus - Mind is not Body - Quebec Model n Netherlands -Taxonomy - Moment vs Process n USA - Handicap, Environment, n Canada - A/P distinction: Person vs Environment n Australia: PWD - DDRAG n Japan: Subjective dimensions n UK: Morbidity coding, DPI n Spanish Network: Cultural sensitivity n Finnish: terms, words,...

15. Overall Objective of ICIDH-2 Revision To develop an operational classification system on human functioning and disability n n that is applicable to every human being: universality n n addresses multiple dimensions regarding the ‘person’ and ‘environment’ (at body, person and society levels) n n international practices that are culture sensitive n n based on user needs n n empirical field trials on applicability, reliability and utility

16. Significant Changes: Overall n Focus: Disabilities Functioning & Disability n Impairments Body Functions & Structures n Disabilities Activities n HandicapsParticipation n No environmentEnvironmental Factors n Causal - linearInteractive-integrative n No Definitions Operational Definitions n No Assessment Linked Instruments

17. ICIDH-1 ICIDH-2 n Conceptual transformation n User needs n Advocacy --> science –Summary health measures: evidence to inform policy –Causality: multi-linear web n Polarization: –medical vs social –global vs local –universal vs minority models n Models

18. Sequence of Concepts ICIDH 1980 Impairments Disabilities Handicaps Disease or disorder

19. Interaction of Concepts 1999 Body Function Activities Participation (Impairments) (Activity Limitation) (Participation Restriction) Health Condition (disorder/disease) Environmental Personal Factors

20. Functioning & Disability as a Spectrum

21. Functioning & Disability as a multidimensional construct Body F+S Person level (activity) Societal (Participation) Environment

22. Hidden Logic of Classification Common Sense - Science Link n Universe n Interconnectedness with other classifications n Dimension (s) –uni-dimensional –multi-dimensional n Extendibility –downwards / upwards –hierarchical relations n Categories-mutually exclusive n Categories- jointly exhaustive n Taxonomic Unit n Systematic approach n Boundaries vs Core 4 Natural classifications - primary (symbolic) 4 Scientific Classifications- secondary (logical)

23. Equity / Parity n Loss of limb landmines = diabetes = thalidomide n Missed days at usual activities flu = depression = back pain = angina n Stigma leprosy = schizophrenia = epilepsy = HIV

24. Images of Disability: Forrest Gump

25. Activity Li mitation (Disability) Activity Li mitation (Disability)

26. Impairment Activity Li mitation (Disability) Impairment Activity Li mitation (Disability)

27. Impairment Activity Participation Li mitation Restriction (Disability) (Handicap) Impairment Activity Participation Li mitation Restriction (Disability) (Handicap)

28. ICIDH in simple terms n Your body doesn’t function properly n You are limited in your activities n You face barriers in society

29. Components of ICIDH-II n Body Functions n Body Structure n Activity n Participation n Environmental Factors

30. ICIDH-II n Body Functions are the physiological or psychological functions of body systems. n Body Structures are anatomic parts of the body such as organs, limbs and their components. n n Impairments are problems in body function or structure such as a significant deviation or loss.

31. ICIDH-II n Activity is the performance of a task or action by an individual. n n Activity Limitations are difficulties an individual may have in the performance of activities.

32. ICIDH-II n Participation is an individual's involvement in life situations in relation to Health Conditions, Body Functions and Structure, Activities, and Contextual factors. n n Participation Restrictions are problems an individual may have in the manner or extent of involvement in life situation

33. ICIDH-II Environmental Factors make up the physical, social and attitudinal environment in which people live and conduct their lives

34. Dimensions of Functioning & Disability BODY PERSON SOCIETY BODY PERSON SOCIETY Function/ Activities Participation Structure (impairment) (limitation) (restriction) Body ACTIVITIES PARTICIPATION

35. Schizophrenia Information Deficit in Occupational processing parental functions hindrance, Work dysfunction Stigmatization Work dysfunction Stigmatization Body ACTIVITIES Participation

36. Epilepsy Transient loss of none denial of a Consciousness driving licence IMPAIRMENTS ACTIVITY PARTICIPATION LIMITATIONS RESTRICTION LIMITATIONS RESTRICTION

37. Multiple Sclerosis Fatigue self-care Community part. Speech doing housework Employment Weakness in handling objects lack of special musclesdevices IMPAIRMENTS ACTIVITY PARTICIPATION LIMITATIONS RESTRICTION LIMITATIONS RESTRICTION

38. ICIDH-II Classification of Each Component n Chapter e.g., Activities of moving around n Block e.g., Walking and related activities n Two-Level category e.g., Walking activity n Three-Level category e.g., Walking short distances n Four-Level category, if needed

39. ICIDH-II Uniform Qualifier 0 NO problem 0-4 % 1 MILD problem 5-24 % 2 MODERATE problem25-49 % 3 SEVERE problem 50-95 % 4 COMPLETE problem96-100 % 8 not specified 9 not applicable

40. ICIDH 2 Codes a 4 10 0 X. 2 0 Dimension Chapter Two level Three level Four level First qualifier Second qualifier

41. ICIDH-II Qualifiers for EF -0 NO barriers (none, absent, negligible… ) 0-4 % -1 MILD barriers (slight, low…)5-24 % -2 MODERATE barriers(medium, fair...)25-49 % -3 SEVERE barriers (high, extreme, …)50-95 % -4 COMPLETE barriers(total…)96-100 % +0 NO facilitators (none, absent, negligible… ) 0-4 % +1 MILD facilitators (slight, low…)5-24 % +2 MODERATE facilitators(medium, fair...)25-49 % +3 SEVERE facilitators (high, extreme, …)50-95 % +4 COMPLETE facilitators(total…)96-100 %

42. www.who.ch/icidh

43. Multi-level ICIDH Database

44. User Comments

45. Interaction of E with B, A, P

46. ISO Standards Application n n Terminology – –Harmonization of terms and clarification of semantic principles – –Translation – –Operationalization – –Computerization n n Standardization for a multi-view and multi version approach – –Compatibility – –Standard classification procedures: Parent-child categories

47. Use of ICIDH n Scientific :Impact of illness n Services :Interventions and outcomes n Individual :Specify needs n Economic :Planning n Social: Rights of the individual-duties of the society

48. Future Directions with ICIDH-2 n Use of the ICIDH-2 at country level n Establishing an international data set and comparisons n Algorithms for eligibility benefits, etc. n Assessment instruments n Computerization & case-recording forms

49. Links of ICIDH and DALYs ICI D A L Y D A L YH

50. Activity/ParticipationGOOD Remove Barriers Good example Learn from it Identify facilitators Awareness R & D

51. Links between Disability & Quality of Life Disablements NonePresent GoodGood BadBad Quality of Life

52. ICIDH 2 Beta 2 Field Trial Studies World Health Organization Assessment, Classification & Epidemiology Group World Health Organization Assessment, Classification & Epidemiology Group

53. ICIDH 2 Beta 2 Field Trial Studies ICIDH 2 Beta 2 Field Trial Studies Goals n n to test the feasibility of the use of the classification in different settings n n to test the reliability of the classification in different settings, formats and versions n n to address some basic questions related to constructs and validity

54. ICIDH-2 Checklist n Easy to fill short list of ICIDH-2 categories n Available in several versions –Clinician –Self-administered –Informant n Can be used for Activity limitations alone

56. ICIDH-2 Beta 2 Field Trials n Core Studies –Translation and Linguistic Evaluation –Basic Questions –Feasibility and Reliability for Cases n Additional Studies –Feasibility and Reliability for Health Records –Feasibility and Reliability for Surveys –Face validity and predictive validity –Utility for Intervention planning and evaluation –Individual Centre & Task Force studies

57. Translation & Linguistic Evaluation n Translation - must for non-english speaking countries n Linguistic Evaluation - for all countries Process n n Translation of the short version (two-level) n n Back-translation and linguistic evaluation of key terms n n Evaluation by a bi-lingual expert panel n n Modifications made based on its recommendations n The translation, back-translation and linguistic evaluation of key terms and a report on this exercise

58. Linguistic Evaluation for English Speakers n English term has different or modified meaning n Term has specific meaning in a specialty n Definitions and inclusion/exclusion terms do not meet the operational requirements n improvements suggested in: –terminology –definitions –operationalizations –links with assessment and evaluation tools n better translatable terms for other languages

59. Basic Questions n n New Basic Questions for Beta 2 n n Response Possibilities: – –Individuals – –Consensus Conferences – –Feedback form n n Qualitative and Quantitative analysis

60. Examples of Basic Questions n Title of of ICIDH-2 n Changes in the Definitions & terminology n Conceptualizations of B,A,P and E n Structure of the Classification n Operationalizations n Qualifiers n Guidelines and application notes n Philosophy –Have changes been effective, if not identify problems, recommend changes? –Are the current structures acceptable, accurate ? Any better approach?

61. Feasibility in Live Evaluations n Familiarisation of users n Test coding with actual clients n systematic feedback on –use of codes –ease of use –confidence in coding –meaningfulness –time to do coding –missing areas

62. Reliability in Live Evaluations n Rater-observer in one evaluation n Repeat assessment after one week n Reliability calculated for –2 level categories –3 and 4 level categories –qualifiers

63. Reliability on Case Summaries (Vignettes) n Vignettes collected from centres n Standard vignettes developed n Accepted coding developed n Rated across centres n Comparisons made

64. Coding Cases: Mr A 27 y.o. engineer n n lacks hands due to birth defect thalidomide n n difficulty with fine movements n n can and does drive a standard car n n law in his country prohibits him from driving.

65. Mr. A. ICIDH-2 coding B: Muscles power functions (b730) – no impairment A: Activities of using transportation as a driver (a450) – no limitation P: Participation in mobility with transportation (p240) – restricted E: Transportation systems and policies (e635) – barrier

66. CASE 1 Ms. can understand the basic need to maintain her health. Yet, because no physician in her area provides care for people with mental retardation, she does not receive the preventive and basic care she requires to maintain good health. Ms. A, with a diagnosis of ICD 10 mild mental retardation, can understand the basic need to maintain her health. Yet, because no physician in her area provides care for people with mental retardation, she does not receive the preventive and basic care she requires to maintain good health.

67. CASE 1 -- coding Ms. can understand the need to maintain her health; no physician provides care; she does not receive health care Ms. A: mild mental retardation; can understand the need to maintain her health; no physician provides care; she does not receive health care B:Intellectual functions (b120) – impaired A:Activities of looking after one’s health (a580) – not limited P:Participation in health (p140) – restricted EF:Health service providers (e345) – barrier

68. CASE 2 Mr. B has a paraplegic condition, as a result of a severe neck injury, and cannot perform the basic movements required to drive a standard car; however, with a suitably modified vehicle, he can drive safely. Unfortunately, there is a law in his province that prohibits him from driving.

69. CASE 2-- coding Mr. B: paraplegic condition; cannot drive standard car, but can drive modified vehicle; law prohibits driving. B:Muscles power functions (b730) – impaired A:Activities of using transportation as a driver (a450) – not impaired P:Participation in mobility with transportation (p240) – restricted EF:Products for personal mobility and transportation (e140) – facilitator Transportation systems and policies (e635) – barrier

70. CASE 3 Mr. C has cerebral palsy can not speak clearly, but has improved with the help of a speech therapist. Around friends or close colleagues at work he has no difficulty with conversations. However, most strangers do not take the time to listen carefully to understand him. So, Mr. C does not always get what he wants in stores and restaurants.

71. CASE 3 -- coding Mr. C: has cerebral palsy; with speech therapy can speak clearly around friends or close colleagues at work; not strangers; doesn’t get service in stores. B:Articulation functions (b320) – impaired A:Activities of producing spoken messages (a230) – limited Activities of maintaining interaction (a740) – not limited P:Participation in spoken exchange of information (p310) – restricted Participation in necessities for oneself (p130) – restricted Participation in informal social relationships (p430) – not restricted EF:Health services (e575) – facilitator Friends (e320) – facilitator Strangers (e355) – barrier

72. CASE 4 A mentally retarded couple have been married for several years and have always wanted to have children. There are no medical reasons why they cannot, and they believe that they will not have any problems in the day-to-day care of a child. Yet, they have decided not to have a child because they believe that people will think they are bad parents and their child will be shunned by other children and made fun of.

73. CASE 4-- coding Mentally retarded couple: want and can care for children; fear attitudes of others, so have decided not to have children. B:Intellectual functions (b120) – impaired Procreation functions (b660) – not impaired A:Activities of assisting others (a660) – not limited P:Participation in family relationships (p410) – restricted Participation in caring for others (p530) – restricted EF:Societal attitudes and beliefs (e420) – barrier

74. CASE 5 A child born deaf and blind but with normal intelligence, is covered by strict educational mainstreaming laws and is a student in a regular public school. Her teacher has access to support staff trained to teach children with multiple sensory impairments, the child uses a computer with a Braille adaptation, and is fully accepted by other children in the class. Unfortunately, despite the assistance, she is having considerable difficulty learning basic reading skills.

75. CASE 5 -- coding Child: deaf, blind, normal intelligence; mainstreamed with good support in public school; difficulty learning reading. B:Seeing functions (b210) – impaired; Hearing functions (b230) – impaired; Intellectual functions (b120) – not impaired A:Purposeful sensory activities (a110) – limited; Activities of learning to read (a115) – limited; Activities of understanding spoken messages (a210) – limited; Activities of understanding written messages (a225) – limited; Basic interpersonal activities (a710) – not limited; Complex interpersonal activities (a720) – not limited P:Participation in education in school (p630) – restricted EF:Products for communication (e135) – facilitator; Products for education e145) – facilitator; Friends (e320) – facilitator; People in positions of authority (e330) – facilitator

76. Applicability on Records Applicability on Records n Use of routine health or other records n Information extracted using checklist n Feasibility and Reliability of classification tested

77. Applicability in Surveys Applicability in Surveys n Back-coding of existing survey records n Application in new surveys –Feasibility –Reliability –Meaningfulness of information

78. Face and Predictive Validity Face and Predictive Validity n Information on functioning and disability –ICIDH-2 –ICIDH-2 checklist –Other assessment instruments n Other information collected on –diagnosis, severity –health care utilisation –loss of work days, etc... n Correlation for cross-sectional measures n Predictive power for longitudinal measures

79. Utility for Interventions n Intervention matching –indications, outcomes n Intervention planning based on ICIDH-2 n Evaluation by intervention personnel –Review of advantages and disadvantages –Multiple informant feedback

80. Centre and Task Force Recommended Studies n For A and P overlap n Formal Reference Model of the ICIDH-2 n Any others

81. ICIDH-2 Material n Available from the WHO Website http://www.who.int/icidh