Implementation of the International Classification of Functioning, Disability, and Health (ICF) Core Sets for Children and Youth with Cerebral Palsy: Global Initiatives Promoting Optimal Functioning

Background: The International Classification of Functioning, Disability, and Health (ICF) Core Sets for children and youth with cerebral palsy (CP) offer service providers and stakeholders a specific framework to explore functioning and disability for assessment, treatment, evaluation, and policy purposes in a global context. Objective: Describe global initiatives applying the ICF Core Sets for children and youth with CP, with a focus on contributions to clinical practice and challenges in their implementation. Methods: This is a descriptive cross-sectional study. Ongoing initiatives applying the ICF Core Sets for CP in Russia, Poland, Malawi, and Brazil are included. Results: The main contributions of applying the ICF Core Sets for children and youth with CP include: (1) an objective description of abilities and limitations in everyday activities; (2) a consistent identification of facilitators and barriers influencing functioning; (3) a practical communication tool promoting client-centered care and multidisciplinary teamwork; and, (4) a useful guideline for measurement selection. The main challenges of adopting the ICF Core Sets are related to lack of ICF knowledge requiring intense training and translating results from standardized measures into the ICF qualifiers in a consistent way. Conclusions: Global initiatives include research and clinical applications at the program, service and system levels. The ICF Core Sets for CP are useful tools to guide service provision and build profiles of functioning and disability. Global interprofessional collaboration, capacity training, and informatics (e-records) will maximize their applications and accelerate adoption.


Supplementary Material -VIDEO S1
Introduction to the ICF model in pediatrics, link to open-access video: https://youtu.be/4kA-cRFn5Lo This video briefly introduces the ICF model, its dimensions and components. A practical case scenario illustrates how to navigate the model in a regular clinical situation. Finally, it highlights the importance of adopting the ICF model in pediatrics to ensure the application of the conventions of people with disabilities and the rights of children. Table S1. ICF Core Sets for children and youth with CP complete list with user instructions [22].

ICF CORE SETS FOR CHILDREN AND YOUTH WITH CEREBRAL PALSY -USER INSTRUCTIONS
The purpose of the ICF Core Sets for children and youth (CY) with cerebral palsy (CP) is to describe the present child or youth's level of functioning, along with facilitators and barriers that influence functioning. The ICF Core Sets for CY with CP can be applied in clinical, research, teaching and administration. Emphasis is on the child or youth's performance of everyday activities at home, school and in the community.
There are five ICF Core Sets for CY with CP: the Comprehensive ICF Core Set, the Common Brief ICF Core Set, and the three Age-Specific Brief ICF Core Sets (0 to 6 years, 6≥ to <14, and 14≥ to 18 years of age). User instructions are provided to assist in determining how to select and use the Core Sets.
Step I -Selection of Type of ICF Core Set The selection of the appropriate type of ICF Core Set -Comprehensive, Common Brief, or Age-Specific Brief -depends on the user's intended purpose and the amount of information he or she requires to characterize the level of functioning.
 Comprehensive ICF Core Set for CY with CP: Used for a complete and detailed description of functioning in CY with CP aged 0 to 18 years. Due to the level of detail, this Core Set is useful in interdisciplinary assessments for which an exhaustive assessment can be distributed among team members from different professions.
 Common Brief ICF Core Set for CY with CP: Used to describe the most common areas of functioning in CY aged 0 to 18 years with CP. The Common Brief Core Set can be employed in regular clinical encounters where only a brief assessment is necessary, and in clinical and epidemiological research.
This Core Set can be used by a single professional or an inter-disciplinary team. A key characteristic of the Common Brief Core Set is that it allows the description of the level of functioning of CY with CP over time, from birth to transition to adulthood. Therefore, this Core Set can be considered as a minimum for any "minimal data set" which describes CY with CP across their lifespan. Use of this Core Set by administrators, health planners, and CP registries would be expected.
 Age-Specific Brief ICF Core Set for CY with CP: Each of the age-specific sets includes the ICF categories of the Common Brief ICF Core Set in addition to ICF categories unique to each age-group: 0 to <6, 6≥ to <14 and 14≥ to 18 years of age. Each age-specific ICF Core Set describes the most common areas of functioning in CY with CP for the associated age-group. The Age-Specific ICF Core Sets can be applied in clinical or research context where additional detail is desirable in caring for or describing a particular age-group of CY with CP. These ICF Core Sets can be used by a single professional or an interdisciplinary team.
Step II-Description of Level of Functioning Once the appropriate ICF Core Set is selected, the ICF categories that are contained in the ICF Core Set are used as a reference to guide users through the assessment process. Each ICF category has a definition with inclusion and exclusion criteria. (pediatric ICF manual) Professionals may use interviews (medical history), clinical examination, clinical tools, self or proxy-reported questionnaires, and/or technical investigations to collect information related to each ICF category. The selection of questionnaires and clinical tools is dependent on how well the content of the tools align with the ICF categories that are included in the Core Set. (For examples on how to select a tool using the ICF as a reference please see Schiariti et al.). Note: work is under way to identify a pool of measures that best represent the content of the five ICF Core Sets for CY with CP.
Step III-Rating the Degree of Functioning Professionals may choose to summarize the information collected during the assessment process and create a functional profile of the child or youth with CP (e.g. Figure 2). For this purpose, ICF qualifiers must be assigned to each of the core set's ICF categories. The ICF qualifiers represent a general ordinal scale ranging from 0=no problem to 4=complete problem (pediatric ICF manual). The ICF qualifiers describe the degree of impairment, limitation or restriction in each category within the component Body Structures, Body Functions, and Activity and Participation. Additionally, within the component Environmental Factors the ICF qualifiers describe barriers or facilitators, ranging from 0=no barrier/ facilitator to 4 complete barrier/facilitator, denoting facilitators with a "+". The assignment of ICF qualifiers is made using clinical judgement and they should only be used as descriptors of the degree of functioning. They do not represent an assessment tool. We recommend clinicians working in multidisciplinary teams to discuss the assignment of ICF qualifiers before using the rating scale in clinical practice. We also recommend that users establish intrarater reliability before using the ICF qualifiers for research purposes.
Finally, as the component Personal Factors does not have ICF categories assigned, we also recommend adding to the functional profile the essential personal characteristics of the child or youth with CP that would have a positive or negative impact on Body Structures, Body Functions, Activity and Participation, and Environmental Factors. Personal Factors, such as preferences, positive attitudes, and other attributes can influence adherence to interventions; thus, they should be routinely addressed and considered by professionals.
It is note-worthy that the ICF Core Sets for CY with CP allow the description of both abilities and limitations in everyday functioning, along with facilitators and barriers that influence functioning. We believe that the inclusion of positive aspects (abilities, strengths and facilitators) when describing functioning is a significant contribution of the ICF Core Sets for CY with CP, encouraging professionals and families to share an optimistic approach to the functioning of CY with CP. The five ICF Core Sets for CY with CP are provided below: BRIEF Mental functions of language Specific mental functions of recognizing and using signs, symbols and other components of a language. Inclusions: functions of reception and decryption of spoken, written or other forms of language such as sign language; functions of expression of spoken, written or other forms of language; integrative language functions, spoken and written, such as involved in receptive, expressive, Broca's, Wernicke's and conduction aphasia Exclusions: attention functions (b140); memory functions (b144); perceptual functions (b156); thought functions (b160); higher-level cognitive functions (b164); calculation functions (b172); mental functions of complex movements ( b735

Muscle tone functions
Functions related to the tension present in the resting muscles and the resistance offered when trying to move the muscles passively.
Inclusions: functions associated with the tension of isolated muscles and muscle groups, muscles of one limb, one side of the body and the lower half of the body, muscles of all limbs, muscles of the trunk, and all muscles of the body; impairments such as hypotonia, hypertonia and muscle spasticity, myotonia and paramyotonia Exclusions: muscle power functions (b730); muscle endurance functions (b740)  Functions related to the tension present in the resting muscles and the resistance offered when trying to move the muscles passively.

= physiological functions of body systems (including psychological functions)
Inclusions: functions associated with the tension of isolated muscles and muscle groups, muscles of one limb, one side of the body and the lower half of the body, muscles of all limbs, muscles of the trunk, and all muscles of the body; impairments such as hypotonia, hypertonia and muscle spasticity, myotonia and paramyotonia Exclusions: muscle power functions (b730); muscle endurance functions (b740) Carrying out daily routine Carrying out simple or complex and coordinated actions in order to plan, manage and complete the requirements of day-to-day procedures or duties, such as budgeting time and making plans for separate activities throughout the day.
Inclusions: managing and completing the daily routine; managing one's own activity level Exclusion: undertaking multiple tasks (d220)

d350 Conversation
Starting, sustaining and ending an interchange of thoughts and ideas, carried out by means of spoken, written, sign or other forms of language, with one or more people one knows or who are strangers, in formal or casual settings.
Inclusions: starting, sustaining and ending a conversation; conversing with one or many people

= execution of a task or action by an individual and involvement in a life situation
Indicating the need for, planning and carrying out the elimination of human waste (menstruation, urination and defecation), and cleaning oneself afterwards. Inclusions: regulating urination, defecation and menstrual care Exclusions: washing oneself (d510); caring for body parts (d520) d550 Eating Indicating need for, and carrying out the coordinated tasks and actions of eating food that has been served, bringing it to the mouth and consuming it in culturally acceptable ways, cutting or breaking food into pieces, opening bottles and cans, using eating implements, having meals, feasting or dining. Exclusion: drinking (d560) d710

Basic interpersonal interactions
Interacting with people in a contextually and socially appropriate manner, such as by showing consideration and esteem when appropriate, or responding to the feelings of others.
Inclusions: showing respect, warmth, appreciation, and tolerance in relationships; responding to criticism and social cues in relationships; and using appropriate physical contact in relationships d760 Family relationships Creating and maintaining kinship relationships, such as with members of the nuclear family, extended family, foster and adopted family and step-relationships, more distant relationships such as second cousins or legal guardians. Inclusions: parent-child and child-parent relationships, sibling and extended family relationships School education Gaining admission to school, engaging in all school-related responsibilities and privileges, and learning the course material, subjects and other curriculum requirements in a primary or secondary education programme, including attending school regularly, working cooperatively with other students, taking direction from teachers, organizing, studying and completing assigned tasks and projects, and advancing to other stages of education. d920 Recreation and leisure Engaging in any form of play, recreational or leisure activity, such as informal or organized play and sports, programmes of physical fitness, relaxation, amusement or diversion, going to art galleries, museums, cinemas or theatres; engaging in crafts or hobbies, reading for enjoyment, playing musical instruments; sightseeing, tourism and travelling for pleasure. Inclusions: games, sports, arts and culture, crafts, hobbies and socializing Exclusions: riding animals for transportation (d480); remunerative and nonremunerative work (d850 and d855); engagement in play (d880); religion and spirituality (d930); political life and citizenship (d950)

ENVIRONMENTAL FACTORS (n=11)
= make up the physical, social and attitudinal environment in which people live and conduct their lives e115 Products and technology for personal use in daily living Equipment, products and technologies used by people in daily activities, including those adapted or specially designed, located in, on or near the person using them.
Inclusions: general and assistive products and technology for personal use Exclusions: products and technology for personal indoor and outdoor mobility and transportation (e120); products and technology for communication (e125) e120 Products and technology for personal indoor and outdoor mobility and transportation Equipment, products and technologies used by people in activities of moving inside and outside buildings, including those adapted or specially designed, located in, on or near the person using them.
Inclusions: general and assistive products and technology for personal indoor and outdoor mobility and transportation Family relationships Creating and maintaining kinship relationships, such as with members of the nuclear family, extended family, foster and adopted family and step-relatioships, more distant relationships such as second cousins or legal guardians. Inclusions: parent-child and child-parent relationships, sibling and extended family relationships d820 School education Gaining admission to school, engaging in all school-related responsibilities and privileges, and learning the course material, subjects and other curriculum requirements in a primary or secondary education programme, including attending school regularly, working cooperatively with other students, taking direction from teachers, organizing, studying and completing assigned tasks and projects, and advancing to other stages of education.
d845 Acquiring, keeping and terminating a job Seeking, finding and choosing employment, being hired and accepting employment, maintaining and advancing through a job, trade, occupation or profession, and leaving a job in an appropriate manner. Inclusions: seeking employment; preparing a resume or curriculum vitae; contacting employers and preparing interviews; maintaining a job; monitoring one's own work performance; giving notice; and terminating a job d920 Recreation and leisure Engaging in any form of play, recreational or leisure activity, such as informal or organized play and sports, programmes of physical fitness, relaxation, amusement or diversion, going to art galleries, museums, cinemas or theatres; engaging in crafts or hobbies, reading for enjoyment, playing musical instruments; sightseeing, tourism and travelling for pleasure. Inclusions: play, sports, arts and culture, crafts, hobbies and socializing Exclusions: riding animals for transportation (d480); remunerative and non-remunerative work (d850 and d855); religion and spirituality (d930); political life and citizenship (d950)

ENVIRONMENTAL FACTORS (n=11)
= make up the physical, social and attitudinal environment in which people live and conduct their lives e115 Products and technology for personal use in daily living Equipment, products and technologies used by people in daily activities, including those adapted or specially designed, located in, on or near the person using them. Inclusions: general and assistive products and technology for personal use e120 Products and technology for personal indoor and outdoor mobility and transportation Equipment, products and technologies used by people in activities of moving inside and outside buildings, including those adapted or specially designed, located in, on or near the person using them. Inclusions: general and assistive products and technology for personal indoor and outdoor mobility and transportation = anatomical parts of the body such as organs, limbs and their components s110 Structure of brain s320 Structure of mouth s730 Structure of upper extremity s750 Structure of lower extremity s760 Structure of trunk s7700 Bones s7703 Extra-articular ligaments, fasciae, extramuscular aponeuroses, retinacula, septa, bursae, unspecified    b730 Muscle power functions Functions related to the force generated by the contraction of a muscle or muscle groups.
Inclusions: functions associated with the power of specific muscles and muscle groups, muscles of one limb, one side of the body, the lower half of the body, all limbs, the trunk and the body as a whole; impairments such as weakness of small muscles in feet and hands, muscle paresis, muscle paralysis, monoplegia, hemiplegia, paraplegia, quadriplegia and akinetic mutism Exclusions: functions of structures adjoining the eye (b215); muscle tone functions (b735); muscle endurance functions (b740) b735

Muscle tone functions
Functions related to the tension present in the resting muscles and the resistance offered when trying to move the muscles passively.
Inclusions: functions associated with the tension of isolated muscles and muscle groups,muscles of one limb, one side of the body and the lower half of the body, muscles of all limbs, muscles of the trunk, and all muscles of the body; impairments such as hypotonia, hypertonia and muscle spasticity, myotonia and paramyotonia Exclusions: muscle power functions (b730); muscle endurance functions (b740) b740 Muscle endurance functions Functions related to sustaining muscle contraction for the required period of time.
Inclusions: functions associated with sustaining muscle contraction for isolated muscles and muscle groups, and all muscles of the body; impairments such as in myasthenia gravis Exclusions: exercise tolerance functions (b455); muscle power functions (b730); muscle tone functions (b735) Using the sense of seeing intentionally to experience visual stimuli, such as visually tracking an object, watching persons, looking at a sporting event, person, or children playing.
d115 Listening Using the sense of hearing intentionally to experience auditory stimuli, such as listening to a radio, the human voice, to music, a lecture, or to a story told. d120 Other pursposeful sensing Using the body's other basic senses intentionally to experience stimuli, such as touching and feeling textures, tasting sweets or smelling flowers.
d130 Copying Imitating or mimicking as a basic component of learning, such as copying, repeating a facial expression, a gesture, a sound or the letters of an alphabet. Inclusion: immediate imitation of an action or behaviour.

d131
Learning through actions with objects Learning through simple actions on a single object, two or more objects, symbolic and pretend play, such as in hitting an object, banging blocks and playing with dolls or cars.

d133
Acquiring language Developing the competence to represent persons, objects, events and feelings through words, symbols, phrases and sentences.
Exclusions: acquiring additional language (d134); communication (d310-d399) d137 Acquiring concepts Developing competence to understand and use basic and complex concepts related to the characteristics of things, persons or events d140 Learning to read Developing the competence to read written material (including Braille and other symbols) with fluency and accuracy, such as recognizing characters and alphabets, sounding out words written words with correct pronunciation, and understanding words and phrases.

d145
Learning to write Developing the competence to produce symbols that represent sounds, words or phrases in order to convey meaning (including Braille writing and other symbols), such as spelling effectively and using correct grammar.

d155
Acquiring skills Developing basic and complex competencies in integrated sets of actions or tasks so as to initiate and follow through with the acquisition of a skill, such as manipulating tools or toys, or playing games. Inclusions: acquiring basic and complex skills Exclusions: learning to write (d145) and writing (d170), learning to play (d131) d160 Focusing attention Intentionally focusing on specific stimuli, such as by filtering out distracting noises.
d166 Reading Performing activities involved in the comprehension and interpretation of written language (e.g. books, instructions, newspapers in text or Braille), for the purpose of obtaining general knowledge or specific information.
Inclusion: Comprehension and interpretation of written language in standard form of letters or characters as well as text created with unique symbols such as icons Exclusion: learning to read (d140).
d170 Writing Using or producing symbols or language to convey information, such as producing a written record of events or ideas or drafting a letter. Exclusion: learning to write (d145) d172 Calculating Performing computations by applying mathematical principles to solve problems that are described in words and producing or displaying the results, such as computing the sum of three numbers or finding the result of dividing one number by another. Exclusion: learning to calculate (d150)

ACTIVITIES AND PARTICIPATION (Continued) d175
Solving problems Finding solutions to questions or situations by identifying and analysing issues, developing options and solutions, evaluating potential effects of solutions, and executing a chosen solution, such as in resolving a dispute between two people. Inclusions: solving simple and complex problems Exclusions: thinking (d163); making decisions (d177) d177 Making decisions Making a choice among options, implementing the choice, and evaluating the effects of the choice, such as selecting and purchasing a specific item, or deciding to undertake and undertaking one task from among several tasks that need to be done.
Exclusions: thinking (d163); solving problems (d175) d220 Undertaking multiple tasks Carrying out simple or complex and coordinated actions as components of multiple, integrated and complex tasks in sequence or simultaneously.
Inclusions: undertaking multiple tasks; completing multiple tasks; undertaking multiple tasks independently and in a group Exclusions: acquiring skills (d155); solving problems (d175); making decisions (d177); undertaking a single task (d210) d230 Carrying out daily routine Carrying out simple or complex and coordinated actions in order to plan, manage and complete the requirements of day-to-day procedures or duties, such as budgeting time and making plans for separate activities throughout the day.
Inclusions: managing and completing the daily routine; managing one's own activity level Exclusion: undertaking multiple tasks (d220) d250 Managing one's own behaviour Carrying out simple or complex and coordinated actions in a consistent manner in response to new situations, persons or experiences, such as being quiet in a library. d310 Communicating with -receiving -spoken messages Comprehending literal and implied meanings of messages in spoken language, such as understanding that a statement asserts a fact or is an idiomatic expression, such as responding and comprehending spoken messages.
d330 Speaking Producing words, phrases and longer passages in spoken messages with literal and implied meaning, such as expressing a fact or telling a story in oral language d331 Pre-talking Vocalizing when aware of another person in the proximal environment, such as producing sounds when the mother is close; babbling; babbling in turn-taking activities. Vocalizing in response to speech through imitating speech-sounds in a turn taking procedure. d335 Producing non-verbal messages Using gestures, symbols and drawings to convey messages, such as shaking one's head to indicate disagreement or drawing a picture or diagram to convey a fact or complex idea. Inclusions: producing body gestures, signs, symbols, drawings and photographs d350 Conversation Starting, sustaining and ending an interchange of thoughts and ideas, carried out by means of spoken, written, sign or other forms of language, with one or more persons one knows or who are strangers, in formal or casual settings. Inclusions: starting, sustaining and ending a conversation; conversing with one or many people.

d360 Using communication devices and techniques
Using devices, techniques and other means for the purposes of communicating, such as calling a friend on the telephone. Inclusions: using telecommunication devices, using writing machines and communication techniques d410 Changing basic body position Getting into and out of a body position and moving from one location to another,such as rolling from one side to the other, sitting, standing, getting up out of a chair to lie down on a bed, and getting into and out of positions of kneeling or squatting. Inclusion: changing body position from lying down, from squatting or kneeling, from sitting or standing, bending and shifting the body's centre of gravity Exclusion: transferring oneself (d420) Learning at an initial level of organized instruction in the home or in the community designed primarily to introduce a child to a school-type environment and prepare the child for compulsory education, such as by acquiring skills in a day-care or similar setting in preparation for school (e.g. educational services provided in the home or in community settings designed to promote health and cognitive, motor, language and social development and readiness skills for formal education). d820

School education
Gaining admission to school, education; engaging in all school-related responsibilities and privileges; learning the course material, subjects and other curriculum requirements in a primary or secondary education programme, including attending school regularly; working cooperatively with other students, taking direction from teachers, organizing, studying and completing assigned tasks and projects, and advancing to other stages of education. Personal care providers and personal assistants Individuals who provide services as required to support individuals in their daily activities and maintenance of performance at work, education or other life situation, provided either through public or private funds, or else on a voluntary basis, such as providers of support for home-making and maintenance, personal assistants, transport assistants, paid help, nannies and others who function as primary caregivers.

e570
Social security services, systems and policies Services, systems and policies aimed at providing income support to people who, because of age, poverty, unemployment, health condition or disability, require public assistance that is funded either by general tax revenues or contributory schemes. Exclusion: economic services, systems and policies (e565) e575 General social support services, systems and policies Services, systems and policies aimed at providing support to those requiring assistance in areas such as shopping, housework, transport, child care, respite care, self-care and care of others, in order to function more fully in society.
Exclusions: social security services, systems and policies (e570); personal care providers and personal assistants (e340); health services, systems and policies (e580) e580 Health services, systems and policies Services, systems and policies for preventing and treating health problems, providing medical rehabilitation and promoting a healthy lifestyle. Exclusion: general social support services, systems and policies (e575) e585 Education and training services, systems and policies Services, systems and policies for the acquisition, maintenance and improvement of knowledge, expertise and vocational or artistic skills. See UNESCO's International Standard Classification of Education (ISCED-1997).

e590
Labour and employment services, systems and policies Services, systems and policies related to finding suitable work for persons who are unemployed or looking for different work, or to support individuals already employed who are seeking promotion. Exclusion: economic services, systems and policies (e565)