Part 1 of Mini-Symposium "Connecting 'Patient-Reported Problems' to 'Patient-Reported Outcomes' using the ICF at the 30th Annual Meeting of the European Academy of Childhood Disability in Tbilisi, Georgia

1. Connecting 'Patient-Reported Problems' to
'Patient-Reported Outcomes' using the ICF
Mini-Symposium, May 31st, 2018
In order of appearance:
Olaf Kraus de Camargo (@DevPeds)
Jennifer Johannesen (@jenjohannesen)
Gabriel M. Ronen
Liane Simon

2. Outline
1. ICF as a tool to translate problems into the realm of functioning
2. How can I ensure that discussing a problem from the ICF perspective
will not be another “paternalistic approach” or a diversion from the true
needs of my child?
3. ICF as a tool to choose outcomes
4. Problems we don't talk about - the hidden goals of professionals

3. ICF as a tool to translate problems into the realm of functioning
• Functioning: “umbrella term encompassing all body functions,
structures, activities and participation; similarly, ‘disability’ serves as an
umbrella term for impairments, activity limitations and participation
restrictions” (WHO, 2001)
• ICF Framework: is a “systems model”, i.e. “the system can fail even if
all subparts are intact and working properly” (Wade and Halligan 2017).
• “Applied to the ICF, even the presence of all functions, structures,
activities and participation items represented in the ICF categories
does not necessarily lead to people having successful functioning."
(Stallinga, in press)

4. A Functioning System
https://youtu.be/V4f_1_r80RY

5. The ICF Framework
WHO, 2001

7. Body Functions and Structures Activities Participation
Environmental Factors Personal Factors
Health conditions ICD10:
• Periventricular leukomalacia
• Encephalopathy after kernicterus
• Bilateral severe hearing loss
• Vision impairment
• Cerebral Palsy (GFMCS III)
• female, 5 yrs
• Refugee
• Ex-preemie
• Good humoured
• Curious
• Fear of health professionals
Strengths Impairments
Left hand motor control Brain (Cognition, motor
control)
Sleeps well Hearing
Vision
Articulation
Strengths Limitations
Indicate needs with eye
gaze
Speaking
Holding objects with her
left hand
Hand use
Listening
Walking
Strengths Restrictions
Complete Puzzles Dressing
Drawing Eating
Scooting on the floor Hygiene
Plays with toys Expressing needs verbally
Facilitators Barriers
Hearing Aids Stairs
Family Small living space
Helmet Lack of knowledge of family
how to introduce assistive
devices
Toilet Seat
Paula

8. Paula

9. Paula

10. Paula

11. Paula

12. Paula

13. •Periventricular leukomalacia
•Encephalopathy after kernicterus
•Bilateral severe hearing loss
•Vision impairment
•Cerebral Palsy (GFMCS III)
Health conditions ICD10:Paula

14. improve understanding of communication device
increase autonomy
teach parents the use of assistive devices
model the use for Paula, normalize technology
enrol Paula in swimming program
increase fitness, fun and friendships without having to walk
• Brain (Cognition, motor
control)
• Articulation
• Hand use
• Expressing needs verbally
• Lack of knowledge of family
how to introduce assistive
devices
• curious
• Fear of health professionals
enrol Paula in swimming program
activity not focused on language
teach using technology to operate toys, surf internet
she is curious and has fun learning new skills
increase social network of family
reduce the burden on the parents https://goo.gl/3RYmfV
Paula

15. References (in order of appearance)
• World Health Organization. (2001). International Classification of Functioning,
Disability and Health: ICF. Geneva, Switzerland: World Health Organization.
• Wade, D. T., & Halligan, P. W. (2017). The biopsychosocial model of illness: a
model whose time has come. Clinical Rehabilitation, 31(8), 995–1004.
https://doi.org/10.1177/0269215517709890
• Stallinga H. in: Kraus de Camargo, O., Simon, L., Ronen, G. M., & Rosenbaum, P.
L. (Eds.). (in press). ICF - The International Classification of Functioning, Disability
and Health - Family, Community and Clinical Applications. London, UK: Mac Keith
Press, London.
• National Geographic “Flight of Starlings” (2016): https://youtu.be/V4f_1_r80RY
• F-words Tool by CanChild: https://goo.gl/3RYmfV