Presentation on theme: "Rune J. Simeonsson, Ph.D.,MSPH"— Presentation transcript:
1 Rune J. Simeonsson, Ph.D.,MSPH Classifying childhood disability with the ICF-CY: from function to contextRune J. Simeonsson, Ph.D.,MSPHUniversity of North Carolina, Chapel HillDon J. Lollar, Ed.D.U.S. Centers for Disease Control and Prevention
2 Priority of documenting childhood disability: 1915 “ during the third or fourth month, the most important acquisition being the power of balancing the head on the shoulders; the absence of this power at this stage was one of the earliest signs of mental deficiency” (Forsyth, 1915, British Medical Journal, p. 535)
3 OverviewPresent overview of ICF version for children and youth (ICF-CY)Identify different uses of the ICF-CYReview guidelines for codingIllustrate coding applications for different usesClinicalEducationalData managementStatistical/ ResearchIdentify continuing issues in the implementation of the ICF-CY
4 ICF-encompassing adult functioning Body Functions&StructuresActivities&ParticipationEnvironmental FactorsFunctionsStructuresCapacityPerformanceBarriersFacilitatorsNach den Ausfuehrungen zum Kontext und Konzept des ICIDH-2 moechte ich Ihnen nun auf die Inhalte, Begriffsdefinitionen und Kodierungschema vorstellen.Der ICIDH-2 unterscheidet zwischen drei Dimensionen…
5 Need for ICF-CYFunctioning, Activities, Participation & Environments differentfrom those of adults
6 Why is there a need for an ICF for children & youth? Nature and form of functioning in children different from that of adultsMain volume of ICF lacking precursors of adult characteristicsChild as a “moving target” in classification of functionIndicators of functional risk factors crucial for prevention and early interventionICF version for children and youth provides continuity of documentation in transitions from child to adult services
7 Chronology 1996-2001- Children’s task force on development of ICF 2001- Development of ICF-CY commissioned (WHO-FIC, Washington, DC)Convening of WHO work group in various venues (Africa, Europe, North America, Asia)2003- First draft of ICF-CY delivered to WHOCollection of field trial data2005- Revision of ICF-CY
8 Chronology 2005- Meeting with WHO to finalize ICF-CY 2005- Preparation and submission of evidence document to WHO2005-Submission of 2nd draft to WHO2005- Review of 2nd draft by experts & original writers2006-Final revisions/ ICFCY photo contest2006- Anticipated publication
9 Guidelines for development of the ICF-CY Development of ICF-CY guided by relevant research and theoryStructure ICF main volume maintainedInclusion/exclusion criteria expandedNew content added to unused codes at 4, 5 and 6 character levelFormats to highlight applications relevant to children
10 Central concepts from theory and research guiding ICF-CY development Development and Disablement as parallel processes-Changes in functions, activities and participation of child reflecting:Role of environment (transactional model)Child in context (Ecological systems theory)Development (Similar sequence/similar structure)Behavioral Regulation & organizationMediating role of Temperament/behavioral styleTiming and maturation (Developmental delay)
11 Development of the ICF-CY Expan-sions-I, ENew codes- 4New codes- 5New codes- 6New codes- TotalB F14413233B S17A & P662177168E F19829Total992810010237
12 ICF-CY: New BF codes Manual dominance b1473 Lateral dominance b1474 Reception of gestural language b16703Expression of gestural language b16713Growth maintenance function b560Onset of menstruation b6503Acquiring learningAcquiring information b132Acquiring language b133
13 ICF-CY: representative new content (e.g. A/P codes) Learning through actions and playing d131Acquiring language d133Acquiring concepts d134Following routines d2300Adapting to changes in daily routine d2304Adapting to changes in time demands d2305Managing one’s time d2306Managing one’s own behavior d235Caring for the nose d5205Indicating need for urination d53000Indicating need for defecation d53010Indicating need for eating d5500
14 ICF-CY: environmental factors codes Drink e1102Products and technology for play e1271Products and technology forpersonal indoor and outdoor mobilitytransportation e120communication e125Special education & training e586
15 General coding rules: annex 2 ICF A. Select an array of codes to form an individual’s profileB. Code relevant information- always in the context of a known or presumed health conditionC. Code explicit information- the basis for coding must be explicit informationD.Code specific information- code at the most specific level possible (1, 3, 4 or 5 character levels)
16 Criteria for qualifiers Form of QualifierICF Manual (problem= scale of difficulty in %)ICF-CY (std dev value< mean and/or % of population with problem)Rating/Descript./Stand.dev% of difficulty% of population0-none ( 0-4%)1-mild (5-24%)2-moderate (25-49%)3-severe (50-95%)4-complete (96-100%)0-none <-1.0 sd (68%)1-mild sd (22%)2-moderate sd (6%)3-severe sd (3.0%)4-complete 3+sd (1.0%)
17 Ethical guidelines in use of ICF: annex 6 Respect and confidentialityRespect inherent value and autonomy of individualNever use to label individualsUse with full knowledge, cooperation and consent of person or advocateICF codes treated confidentiallyClinical use of the ICFExplain purpose to individual or advocateOpportunity for individual or advocate to participateICF used holistically (limitation in physical/social context)Social uses of ICF informationUsed in collaboration with individuals or advocatesICF information use toward social policy- changeICF not used to deny rightsRecognize individual differences
18 Classification applications of ICF-CY A common, universal language shared across disciplines and service settingsA taxonomy for documentation of child functioning in:assessmentinterventionoutcome measurementA framework for specifying the Child, the Environment and the Interaction in child- environment interaction
19 ICF-CY: documenting Child-Environment Interaction Acts upon; Reacts toEnvironmentAvailability & accessibility of physical,social, & psychologicalelementsChildPhysicaland Mental function& structureSource of StimulationSource of Feedback
20 Interaction ICF-CY: documenting Child-Environment <--Interaction Acts upon; Reacts to<--InteractionChildBody Function and Body Structure (intact- impaired)Participation(Full to restricted)Activity(Complete to limited )Environmental Factors(Barriers -Facilitators)Source of StimulationSource of Feedback
21 Classification applications of ICF-CY Standard for documentation of child rights-UN Convention on the Rights of the ChildFramework for integrating interdisciplinary workProfiling functions for planning individualized interventionsDocumenting clinical features of childhood health conditions & diagnosesResource in data managementIntervention and outcome markers in educationVariables for statistical and research work
22 ICF: Framework for interdisciplinary work Health Condition(disorder/disease)Participation(participationrestriction)Body Structures& FunctionsActivities(activity limitation)Environmental PersonalFactors Factors
23 ICF-CY: General steps in coding 1. Define the information available for coding and identify whether it relates to the domain of Body Functions, Body Structures, Activities/Participation or Environmental Factors.2. Locate the chapter (4-character code) within the appropriate domain most closely corresponding to the information to be coded.3. Read the description of the 4-character code and attend to any notes related to the description.4. Review any inclusion or exclusion notes that apply to the code and proceed accordingly.
24 ICF-CY: General steps in coding 5. Determine if the information to be coded is consistent with the 4-character level or if a more detailed description at the 5- or 6-character code should be examined.6. Proceed to the level of code that most closely corresponds to the information to be coded. Review the description and any inclusion or exclusion notes that apply to the code.7. Select the code and review available information for assigning a value for the universal qualifier that defines the extent of the impairment, functional limitation, participation restriction (0=no impairment/difficulty to 4= complete impairment/difficulty or environmental barrier (0=no barrier to 4=complete barrier) or facilitator (0=no facilitator to+ 4=complete facilitator)
25 ICF-CY: General steps in coding 8. Assign the code with the qualifier at the 2nd -, 3rd - or 4th-item level. For example, d115.2 (moderate difficulty in listening).9. Repeat steps 1-8 for each manifestation of function or disability of interest for coding and where information is available10. Parents and consumers may participate in the process by completing age-appropriate inventories that allow specific areas of functional concern to be highlighted, but before full evaluations and codes are provided by professionals or a team of professionals.
26 Case: 10 year old boyT is a ten-year-old boy who was referred to a clinic for an evaluation after experiencing pervasive academic difficulties in the previous two years of school. On the basis of observation, it is clear that he has significant problems in concentration on academic tasks and is highly distractible. His parents report that T is “on the go” all the time and doesn’t seem to listen. According to his parents and teachers he has difficulty keeping still for any length of time in tasks at home and at school. At the present time, this means that he has trouble completing assigned work in the classroom.
27 Case: 10 year old boyHe has particular difficulties remembering material he has studied. He is currently failing all of his academic classes and his performance in reading and writing is at the second grade level. He also shows difficulties adjusting to social situations involving other children. At school as well as at home, T’s teacher and parents are concerned about his high level of activity and the fact that he doesn’t seem to be able to think before he acts. This is evident in his social behavior when he fails to wait for his turn in games and sports and at home when he rides his bicycle into a busy street without looking.
28 Case: 10 year old boyA number of different interventions have been tried to help T perform in the classroom, but these have not resulted in improved performance. While the family has been reluctant to consider medication, T was recently seen by his pediatrician and Ritalin has been prescribed for his high level of activity. In conjunction with the medication trial, the school is designing an education support plan.
29 Case: 14 year oldJ is a 14 year-old girl living with her parents in a small town. She has severe asthma which was detected at a very young age. In addition to heightened response to specific allergens, J’s asthmatic attacks are also triggered by exercise, cold air and when she feels anxious. These attacks last 1-2 hours and occur several times a week. She is currently prescribed a bronchodilator and is to use a nebulizer prophylactically. In the last year, however, J is often inconsistent in following the medication regimen with the result that acute episodes are occurring more frequently.
30 Case: 14 year oldFrom the time she was enrolled in a preschool program to the present, J’s school attendance has been marked by frequent absences. The result has been that her achievement has been consistently poor, and while she has not failed any grades she is falling farther and farther behind her peers. At the present time, she is in the eighth grade in the local middle school. Because of frequent absences, J has not developed a consistent group of friends at school.
31 Case: 14 year oldFurther, because exercise triggers acute episodes, she has not participated in the physical education program at school and is not engaged in any other regular physical activity. A result is that she has experienced a significant weight gain in the last year. J reports feeling different from others increasingly isolated from her peers. Her parents are becoming very concerned about her physical and emotional health and are seeking consultation from their medical doctor.
32 ICF-Cy application: profile dimensions of childhood disability 10-year old Child14 year old Child
33 Clinical applications: clarification of assessment and diagnosis Differentiate characteristics within a diagnosis-Differentiate characteristics of children with the same or different diagnosis-Address disconnect between diagnostic information and the nature of interventionSelection of relevant variables for documentation of child outcomes
34 Clinical application: possible features characterizing child Child with:impairment in social functiond710.3 basic interpersonal interactionsD750.2 informal social relationshipsD760.3family relationshipsimpairment in communicationd310.2 communicating with – receiving spoken messagesd315.4 communicating with – receiving nonverbal messagesd330.4 speakingd335.3 producing nonverbal messagesrestricted, repetitive stereotypic behavior patternb7653 Stereotypies and mannerisms
35 Clinical application; clarifying DSM-IV-TR diagnosis 299.0 Criteria for Autistic disorderA. Total of 6 items from three domainsimpairment in social function (2+ items)impairment in communication (1+)restricted, repetitive stereotypic behavior pattern (1+)B. Delayed/abnormal functioning <3 yrs in one of three areas: social interaction, language, symbolic playC. Rule out Rett syndrome or Childhood Disintegrative Disorder.
36 Clinical application: possible features characterizing child Child with problems of attentionB sustaining attentionB dividing attentionD110.3 watchingD115.3 listeningD160.4 focusing attentionproblems of undertaking and completing taskB organization and planningB problem solvingD undertaking a single taskd undertaking a single task independentlyd completing multiple tasks
37 Clinical application: possible features characterizing child Child with problems of regulating activity & behaviorB impulse controlB127.4 regulation of behaviorB psychomotor controlD managing daily routineD managing one’s own activity levelD maintaining a sitting positionD regulating behaviors within interactionsD maintaining social spaceD820.4 school education
38 Clinical application: clarifying DSM-IV-TR diagnosis Criteria for ADHD- Inattention :Six or more of the following- manifested oftenDifficulty organizingAvoids tasks requiring sustained attentionLoses thingsEasily distractedForgetfulInattention to detailsDifficulty sustaining attentionSeems not to listenFails to finish tasks
39 Clinical application: clarifying DSM-IV TR diagnosis Criteria for ADHD Impulsivity/Hyperactivity :Six or more of the following- manifested oftenHyperactivityFidgetsUnable to stay seatedInappropriate running/ climbing (restlessness)Difficulty engaging in leisure activities quietlyOn the goTalks excessivelyImpulsivityBlurts out answer before question is finishedDifficulty awaiting turnInterrupts or intrudes upon others
40 Educational application: manual for special education *Manual for use of ICF for children and youth with disabilities*Edited and writtenby National Institute ofSpecial Education Japan,Approved by WHO
41 Educational application: framing intervention outcomes ActivitiesParticipationImprovement in school functioning;d166 readingd170 writingd172 calculatingd160 focusing attentiond175 solving problemsd310 communicatingd330 speakingImprovementin personal functioning;& social relationships-D880 play-D350 conversation-D710 interpersonal relationships-D7504 relating with peers-D7604 family relationshipsNach den Ausfuehrungen zum Kontext und Konzept des ICIDH-2 moechte ich Ihnen nun auf die Inhalte, Begriffsdefinitionen und Kodierungschema vorstellen.Der ICIDH-2 unterscheidet zwischen drei Dimensionen…
42 Educational applications: documenting progress of functional outcomes Gradient of change: reduction of severity level within code (e.g. regulating behaviors within interaction)d > d7202.2( complete-> moderate level)Hierarchy of change: moving from lower level code to higher level code(undertaking simple task) d2100.2(undertaking complex task) d2101.2
43 Data management application Use of the ICF and sample d-Codes to describe health-related data elements are recommended in the U.S. Department of Education’s Early Intervention Data Handbook (Version 1.0).EarlyInterventionDataHandbook.asp
44 EI DATA HANDBOOKPURPOSE: to provide guidance for record information systems and collection of data on early intervention servicesA reference book- to promote common language- does not constitute federal requirementUSE: gathering information about infants and toddlers with disabilities for service decisions, program management, research, policy analysis and program evaluation
45 SAMPLE ICF d-CODES IN EI DATA HANDBOOK d160 Focusing attentiond1750 Solving simple problemsd329 Communicating-Receiving Informationd330 Speaking d349 Communication d4103 Sitting d4104 Standingd435 Moving objects with lower extremitiesd440 Fine hand used445 Hand and arm used450 Walking d4550 Crawlingd465 Moving around using equipmentd530 Toileting
46 Assessment inventory in Early intervention Early intervention program for children birth to 3 in GeorgiaAdaptation of 0-3 questionnaire developed for field trials of ICF-CYSelected codes from Activities/Participation and Environmental FactorsVery favorable response by parents to format and developmental contentResulted in raised awareness of environmental factors not considered previously
47 Statistical & research applications Established inter-rater reliability in assigning ICF codes:children with disabilities using existing developmental measures (Ogonowski, et al., 2004);and children with special health care needs structured interview (Kronk, et al., 2005)ICF framework for setting goals for children with speech impairments (McLeod & Bleile, 2004).
48 Statistical & research applications: Canadian national survey data Measuring chronic health conditions and disability in children in Canadian national survey data (McDougall & Miller, 2003).Review of 4 disability and 5 health surveys for extent of coverage of health conditions (ICD-10) and disability (impairment, activity and participation restrictions- ICF)Two independent reviewers
49 Statistical & research applications: Canadian national survey data Extent of coverage of domainDisability SurveysHealth SurveysHealth conditions67%39%Impairments50%55%Activities/ Participation64%84%Environmental Factors60%68%
50 Statistical & research applications: Canadian national survey data Participation and Activity Limitation Survey and National Longitudinal Survey for Children and Youth provided best coverage of ICF activity limitationsPALS provided most comprehensive coverage of need for/use of Assistive technologyAreas of limited coverage in surveys:Mental functions and some body functions;Personal care and domestic life;natural environment changes, attitudes and policies.
51 Research application: joint use of ICF and ICD-10 to code reasons for eligibility in early interventionWhat is the nature and prevalence of functional characteristics of young children (< 3 years) in early intervention ?Lack of information due to the fact that existing eligibility data assigned children to 3 general categories (developmental delay, established medical conditions, risk status)Data drawn from National Early Intervention Longitudinal Study (NEILS) a weighted sample of children and families from the time they enter early intervention through at least kindergarten.
52 NEILS Enrollment Sample Information collected on 5,668 childrenDescriptors accompanying the child’s eligibility status were coded445 different classification entries were organized under 4 categories and 29 subcategoriesAn average of 1.5 descriptors provided for each child (range 1 -11)
53 Algorithm for NEILS coding system ClassificationA conceptual framework with 4 major categories(I-IV) and 29 sub-categories (A-BB):I. Impairment of body functions or structure (A-H)II. Limitations of activity or performance (I-P)III. Diagnosed health conditions (Q-X)IV. Environmental factors (Y-BB)Method:Descriptors on enrollment forms were coded to the closest ICD-10 or ICF codes
54 ICF: Framework for NEILS coding system CATEGORY III: Health Condition(disorder/disease-ICD dx)CATEGORY II:Participation(participationrestriction)CATEGORY I:Body Structures& FunctionsCATEGORY II:Activities(activity limitation)CATEGORY IV:Environmental PersonalFactors Factors
55 Distribution of descriptors (%) assigned to ICD-10 and ICF codes
56 Distribution of ICD codes (N=385) in NEILS coding system Chapter %Infection 1.62Neoplasms 1.08MetabolicNervous systemCirculatoryDigestive%Genitourinary 0.08CongenitalInjuriesSocial riskV-codes
57 Distribution of ICF (N=58) codes in NEILS coding system Domain %Body/mental function 37.3Body structuresActivities/Participation 22.0Environmental factors 13.6
58 Distribution of descriptors (%) assigned to codes by category Distribution of descriptors (%) assigned to codes by category* (>100% given multiple descriptors/child)
59 ICF-CY: further workMapping of existing instruments to ICF-CY domains and codesDevelopment of ICF-CY based screening instrumentsDevelopment of assessment measures compatible with ICF-CYIntroduction of ICF-CY codes into surveysIntroduction of ICF-CY codes into information systemsEducation and training of field
60 Revisiting a priority“..classification is serious business. Classification can profoundly affect what happens to a child. It can open doors to services and experiences the child needs to grow in competence, to become a person sure of his worth, and appreciate the worth of others, to live with zest and to know joy”.(Classification of Children, Hobbs, 1975; The futures of children, Hobbs, 1975)